Stroke Recovery DVD

Inaugural YoungStroke Expo

2011-05-28T08:09:00.000-07:00

The first of 6 YoungStroke Expos to be held around South Carolina in 2011 was held Saturday, May 21, 2011 at the Litchfield Campus of Coastal Carolina University. The first YoungStroke Stroke Support Group meeting was held immediately after at Waccamaw Hospital's conference center in Murrells Inlet, SC.

The day started with a sunrise prayer, the Run! Walk! Roll! event, General assembly, 2 sets of 4 breakout meetings, the YoungStroke Champion Awards and PSA recognition, and then the finl set of 4 breakouts. Attendance was good, the breakouts were interesting, and it was great to see that many people out in support of stroke - young stroke, stroke recovery, stroke prevention, and stroke advocacy.

I won the first YoungStroke Art Competetion, which was judged by Paul Olsen, PhD, who is Professor of Graphic Design and Department Chair at Coastal Carolina University. I entered my picture, There is Always Hope for the Future.

(Click it for a larger view)

Here's the back story on this picture.

There is Always Hope for the Future

(Great Spangled Fritillary at the Cowee Mound)

In addition to the physical work I was doing, I found it helpful to talk to a counselor and would recommend it to anyone in stroke recovery. One day my counselor asked me if I had hope for the future. I replied, "That's a silly question, there is always hope for the future." She said not everyone felt that way. A couple days later I went to the Cowee Mound on my first photo outing since my stroke. It is an ancient Cherokee village site and my all-time favorite place on earth. I was in awe of the beautiful day at this beautiful place and when I took this picture, it made me think how could anyone NOT have hope for the future. So, I named the picture "There is Always Hope for the Future” and made a print for her, my 2 PTs, my 2 OTs, & my psychologist at the rehab hospital, my psychiatrist, my chiropractor, and several others that played a role in my recovery. When I took this picture, I knew everything was going to be all right.

Here are some photos I took. I also videotaped 3 of the breakouts, so I didn't get to shoot some of the other activities of the day.

Amy Edmunds, fondly known as
"The Stroke Lady"

Attendance was good

Erin and Colleen Topper
Erin tells the story of her stroke 9 weeks ago

Dave DeCenso
President, Coastal Carolina University

Bruce Bailey
CEO, Georgetown Hospital System

Lawrence Toliver was Master of
Ceremonies for theYoungStroke
Champion Awards

Lawrence Toliver presents a YoungStroke Champion Award
to Antjuan Seawright who is accepting on behalf of SC State
Senator Darrell Jackson for sposoring a bill that provides for
a comprehensive stroke care system.

Lawrence Toliver presents a YoungStroke Champion Award
to Sheldon Herring for his work pioneering a young stroke
program.

Sheldon Herring talks about his work in
stroke rehab and the West End Co-op
(see link below for more information)
http://www.westendcoop.com/

Paul Olsen presents and Sheldon Herring accepts 2nd & 3rd
place in the Art Competition for the artists and craftsmen of
the West End Co-op (see link below for more information)
http://www.westendcoop.com/

Paul Olsen presents 1st place in the Art Competition to
Ralph Preston for There Is Always Hope for the Future
photo by Deborah Thomas

Amy Edmunds recognizing Larry White for his participation
in theYoungStroke PSA My Friends that I shot and edited.
Clifford Ann, Marcus could not attend but were also

Michael and Carrie Ryhal were
recognized for letting us use their
restaurant, Rotelli's in Conway, SC
to shoot the PSA My Friends.

Supporting YoungStroke.org

2011-04-01T12:28:00.000-07:00

photo by Deborah Thomas (click for a larger view)

Recently I donated my services to YoungStroke to help them promote a series of Expos they are putting on in South Carolina, which has one of the highest stroke rates in the country.

This is from their page YoungStroke.org

Click it, it's a hyperlink.

Stroke Survivor Donates Public Service Announcement

Ralph Preston, young stroke survivor, photographer, and videographer donated production of a public service announcement to promote attendance to YoungStroke's Litchfield Expo on May 21st. The PSA challenges the public's perception of stroke as an elderly affliction by featuring young stroke survivors sharing their stroke experiences. Included are young stroke survivors Larry White, Ann Hamilton, Clifford Brooks, and Marcus Rosenlehner.

Watch the PSA

Click it, it's a hyperlink.

I addition, I donated a Video Invitation.

Click it, it's a hyperlink.

YoungStroke Expo Schedule

Litchfield, SC - May 21, 2011 at the Waccamaw Higher Education Center of Coastal Carolina University

Charleston, SC - June 18, 2011

Florence, SC - Septemeber 17, 2011

Columbia, SC - October 24, 2011

Rock Hill, SC - November 12, 2011

Anderson, SC - date still to be determined

To register for the Litchfield Expo, call 843.655.2835 or go to the YoungStroke website.

Click it, it's a hyperlink.

Brian and Jan Healy agree to be interviewed

2010-11-12T17:34:00.000-08:00

Brian and Jan Healy (photo courtesy of the Healys)

My wife, Deborah, saw an article in Sasee Magazine, a local women's publication, written by Jan Healy about a book that she and her husband Brian had written. Brian had a massive stroke on August 5, 2009 and they wrote a book together about his recovery called Navigating Through the Fog: The Story of a Stroke Survivor and the Woman who Loves Him

Sasee article

Click it, it's a hyperlink.

Their website where you can purchase their book

Navigating Through the Fog

Click it, it's a hyperlink.

Their blog where you can keep updated on what they are doing

Navigating Through the Fog

Click it, it's a hyperlink.

I have read their book and I recommend it to anyone who has recently been impacted by stroke.

Brian had such a massive stroke and made such a great recovery due to his attitude, his hard work, a loving and very supportive wife, and good therapy. His attitude and recovery very much fit into what I hope to bring to people who watch my DVD. He has become an advocate for stroke recovery by speaking and bringing his story of hope to as many people as he can.

Brian Healy speaking at the Orange County Stroke Rehab

Network Stroke Awareness Picnic 2010:

Living Well After Stroke

In for the Long Haul

2010-05-25T10:39:00.001-07:00

photo by Deborah Thomas

On Friday, May, 21, 2010 I spoke at Tri-State Stroke Network's annual conference in Durham, NC. Here is my speech, In for the Long Haul, without all the ad libs, live demonstrations, and Q&A.

By the way, you can click on the pictures for a larger view. I took the pictures, unless otherwise noted.

photo by Deborah Thomas

My name is Ralph Preston. I am a videographer and still photographer who had a stroke a little more than two years ago. I am not a speaker by profession, but speaking and writing have helped me to understand my journey. I hope when we are done, you have a better understanding of the importance of attitude and support in a successful recovery.

I recently moved from Franklin, NC, where I took the pictures you’ve been seeing to Murrells Inlet, SC, where I took these.

I’m going to move right along, so we have time for questions. I don’t work for any drug or medical companies, so I only have a few disclosures.

That is, unless it is about butterflies. And yes, I can tell the difference between Northern, Southern, and Creole Pearlyeyes.

photo by Deborah Thomas

I have recovered fairly well from my stroke, due to my attitude and the hard work I did and continue to do, because I’m In for the Long Haul. Anyone who thinks I’ve fully recovered hasn’t seen me carry 2 full glasses, fold laundry, tie a tie, peel shrimp, or wrestle with the dreaded zip-lock bag. I’m here today to tell you my story and some of what I have learned about attitude, hope, PT, OT, rehab, the road to recovery, and the gap that exists once a stroke patient is released to manage their own recovery. I am also going to tell you about an idea I have for a Stroke Recovery DVD that has become my mission.

photo by unknown with my camera on a Habitat build in Americus, GA

So, how could a 58-year old in good shape have a right-side hemorrhagic stroke on his exercise bike training for the Senior Games?

photo by Nicole Arseneault

It happened because I wouldn’t listen. As much as I hate to admit it, my stroke was completely preventable.

photo by Andy Leonard

I was a stubborn guy with marginally high BP (140/90) who didn’t want to take blood pressure medication and who wouldn’t listen to his wife. My attitude was these things happen to “other people”, not to me.

photo by unknown with my camera on the Virginia Creeper rail trail in VA

I thought I was somehow bulletproof when it comes to getting hurt, getting sick, even aging - you know the type. Men, we only go to the hospital if we can’t stop the bleeding ourselves.

photo by Deborah Thomas

Well, I found the hard way I am not bulletproof. I tell people now I am one of those “other people”.

photo by Bo Wood

And so, I ended up like this. Ad lib – How many people do you know who would show a picture of themselves looking like this? I spent 5 days in the Neurological Unit at Mission Hospital in Asheville, NC and then 17 days at CarePartners, a rehab hospital also in Asheville.

One of the first things I did at CarePartners was have my wife, Deborah, bring me my still camera. I took pictures of the flowers one-handed and from the wheelchair. I took my camera to OT and had them show me the exercises I should do to be able to use my left hand on the camera. It seemed everything had been stripped away from me. I wanted to immediately reconnect with one of the important things in my life, my photography. When I did, it made me feel like things would be o.k.

One thing I decided early on, that helped me tremendously, was that I wasn’t going to try to figure it all out. It was done.

There are no do-overs in life. So, why sit there and lament that things are not the way they used to be, which is what most everyone around me seemed to be doing.

I also decided that I wasn’t going to blame anyone or anything in the chain of events leading up to my stroke, especially not myself or God. I decided that was a slippery slope with nothing but anger and self-pity at the bottom. And then a friend gave me a quote on attitude that helped me put things in perspective. I’d like to read it to you.

I have lived by this quote since I first heard it. Sure, I have my moments, but they are just moments.

In order to get better, I threw myself at daily PT, OT, Hand & Arm, and pool therapy sessions. One day no one came for me to wheel me off to PT. I didn’t want to miss any of my therapy sessions, so I paddled on down using my feet, a trick I learned from my 90-year old mother. It’s never too late to learn from your mother. This got me started doing everything for myself, which I did from then on.

I had great PTs and OTs. My PT, Kathy, adapted her teaching style to my learning style. I’ve always been one for the details, but after the stroke I was even more single-minded, focusing on one task at a time in my recovery. If you told me too many things at once, I would not be able to make my brain deal with it all. So, she had me focus on one thing at a time, and, step by step, I got better.

My OT, Robin, also paid attention to how I learned and we tailored my therapy sessions around my style. Both she and Kathy realized I needed understand what we were doing. They learned the best way to teach me was to show me, since I am a visual learner. They showed me, explained things, were very patient, and talked to me as a friend, something I needed. Both of these therapists helped me to achieve more through their perceptive approach.

So, the greatest gift a therapist can give their patients is to adapt the teaching style to the patient’s learning style.

I decided I wanted to walk out of CarePartners like a normal human being. I was worried a bit because I had not walked on my own yet. But, I have found that if I announce something that’s a stretch, but within my grasp, then I have to live up to it. I asked Kathy to walk out with me because I wanted her to share in my success, since she was a part of it.

My first solo walk was the day before I was to be released. We were headed for my wheelchair when I looked to my left and realized Kathy had let go of me 15 feet back, kind of like when you were five and you discovered your dad had let go of the bicycle.

Other patients acted like they were going to return to their old life, and when they got home, everything was going to be like it was before the stroke.

Despite what they think, stroke patients cannot return to their old lives. Even I thought that for a while, “Yeah I’ll just kick this thing and get right back to where I was.” I even thought I could compete in the Senior Games coming up in a few weeks. (sarcastically) Maybe I'll just do the cycling events and skip the running.

photo by Deborah Thomas

But, by the time I was to leave CarePartners, I realized that was a dream. Nor, could I go back to my old life. It simply did not exist anymore. And, I realized there’s nothing wrong with that!

photo by Deborah Thomas

I told this to one of the nurses and then I just blurted out, “I am going to be the best new me I can be.”

photo by Lisa Preston

It’s cute to have your granddaughter tie your shoes the first few times. But, what every stroke survivor wants is to be independent of other people, especially loved ones. It’s the old, “I don’t want to be a burden” thing, not to mention wanting to regain lost skills.

When I left CarePartners, I told myself I don’t care if it takes 1,000,000 steps to walk better. That seemed like more than enough at the time. Well, I did get a lot better by 1,000,000 steps, but I meant completely better. It seems I underestimated that a bit. I’ve taken more like 2 or 3 million and I’m still getting better, which means I still have deficits. It is a lifelong process, and I’ve had to learn to look at it that way.

I walked out of Carepartners, but took a wheelchair home. I got frustrated with the wheelchair after just a few days. Deborah encouraged me to get out of it and fend for myself. And so a short era of “wall-walking” started. She helped me if I needed to get somewhere and couldn’t do it on my own. She also guarded me against injury, but she let me do things for myself.

So, my days consisted of wall pushups, shoulder raises with a pole, leaning on my affected side, making circles, abduction, the hammer, putty, rubber bands. I walked in the driveway, Deb holding on to me at first and then I walked with a cane. 20 laps around my driveway made a mile. We walked 3 laps at a time at first, 4 or 5 times a day. I tired easily, despite the fact I had run 4 miles 2 days before the stroke, less than a month ago. Everyday I did a little more than the day before and pretty soon I was walking farther and faster.

photo by Anais

My daughter, Lisa, and granddaughter, Anais, came for a visit and we all headed to the beach.

photo by Lisa Preston

It’s healing to have your family around in difficult times and their support cannot be underestimated. In my case, Deborah drove 3 hours to see me every day for 3 weeks when I was in the hospital and rehab, encouraged me to get out of the wheelchair, was supportive, was always positive, held me back when I got too gung ho, put up with endless explanations of what was going on with me, walked countless miles with me at whatever my pace at the time was, and never once complained. I know she had to be tired of me talking about the stroke. I know she hated hearing me tell her I felt “edgy”.

photo by Lisa Preston

photo by Lisa Preston

I am a lucky man to have her in my life. Oh yeah, this is the spot where we got married 27 years ago today, Atalaya Castle at Huntington Beach State Park in Murrells Inlet, SC.

photo by Steve Romano

Happy Anniversary, dear. Here’s to 27 more.

photo by Lisa Preston

When we were at the beach in May I could walk 1/4 mile, at best. I had to watch others walk to the jetty and back, one of Deb and my favorite walks and one we have done literally 100s of times. I vowed then that I would walk to the jetty and back when we returned to the beach in August.

photo by Lisa Preston

photo by Lisa Preston

I did my dowel exercises and practiced squatting and getting up by taking endless pictures of Anais building sandcastles and playing in the surf.

photo by Lisa Preston

When we came back to Franklin, we went walking. There’s that watchful eye. Anais and I share a love of butterflies. Try to start an ATV when you can hardly stand up. And, look who has got my back.

photo by Lisa Preston

photo by Lisa Preston

photo by Lisa Preston

Although I couldn’t use it yet, Anais loved my Total Gym. She showed me how she could pull her own hair back, but I still couldn’t. Tying shoes, and pulling our hair back; I was learning how to be 5 all over again.

photo by Lisa Preston

photo by Lisa Preston

I walked and walked and walked. I started outpatient PT and OT and went twice a week to each. They pushed me there and taught me things I could do at home the other 5 days. I rarely missed a day of doing it on my own. I walked and did PT & OT exercises several times every day. I tied my own shoes. I hopped in place, I hopped from side to side, I hopped laps, I did heel raises, I practiced going up and down stairs.

I did my first video shoot just 3 weeks out of the hospital and I was scared of being around all those people in such tight quarters.

I did an all-day shoot in June when I wasn’t sure I could stand up all day.

photo by the boy's father with my camera

And, an outdoor one in the July heat made me realize I was getting my stamina back. The main thing was, I showed up and tried.

In addition to the physical work I was doing, I found it helpful to talk to a counselor and would recommend it to anyone in stroke recovery. One day my counselor asked me if I had hope for the future. I replied, "That's a silly question, there is always hope for the future." She said not everyone felt that way. A couple days later I went to the Cowee Mound on my first photo outing since my stroke. It is an ancient Cherokee village site and my all-time favorite place on earth. I was in awe of the beautiful day at this beautiful place and when I took this picture, it made me think how could anyone NOT have hope for the future. So, I named the picture "There is Always Hope for the Future” and made a print for her.

In July, I walked and walked and walked some more. I also tied my hair back for the first time. That was the last thing I couldn’t do for myself – independence!

photo by Deborah Thomas

photo by Deborah Thomas

August came and we headed back to the beach and like I had promised myself, we walked to the jetty. When we got there, I realized I’d been so focused on making it to the jetty, I didn’t think about having to walk back, but I made it.

photo by Deborah Thomas

photo by Deborah Thomas

photo by Deborah Thomas

photo by Deborah Thomas

After accomplishing that, I decided I wanted to do another of our favorite walks to Siler Bald to see the featherbells. And now, I knew I could make it.

Siler Bald is 2.5 miles out on the Appalachian Trail. It’s 1500 feet in elevation gain from the parking lot to the top and we used to make it in 50 minutes. We walked it that August day in 60 minutes and I was shocked that we made it that quickly. And, that was over the root, rock, reggae of the Appalachian Trail.

photo by Deborah Thomas

We carried a picnic, water, and my camera. As we sat there on the top of the mountain having a picnic on a beautiful day, I felt on top of the world. I knew then I could do most anything I set my mind to in my recovery. I knew that even if I recovered no more, I would have a satisfying life. That had been a big concern of mine as I sat in a rehab hospital in a wheelchair.

We headed down after lunch to take pictures. Here’s the terrain, and what we came for.

Once I could rack up the miles, I got into the Quantity versus Quality debate. While I could walk many miles, my form was a lot like Chester on Gunsmoke, especially around the house or when I got tired. Everyone I asked seemed to have a different opinion on form versus distance.

But, then I called CarePartners and Shannon, another of my PTs, told me to walk on my heels and, if I could, to walk on my toes. So, I walked a lap on my heels and then 3 regular and then one on my toes and then 3 regular and back to the heels over and over. I practiced what I called “pattern walking”, trying to walk correctly with a slight kick of the foot, heel-toe pronation, and walking “tall” on the affected leg – form over distance. I found that walking correctly patterned my brain. I can tell you from experience, form is more important than distance.

photo by Andy Leonard

In September, I needed shoot with my 26-pound Betacam for a Habitat for Humanity project in Charlotte, NC. I have been a volunteer for 22 years. To add to the challenge, it rained 2 inches the night before. It was slippery and there was no place to set the camera down.

photo by Andy Leonard

On the 3 shoots I’d done since my stroke, I’d used my small video camera. It was time to see if I could do deep knee bends with the broadcast camera.

photo by Andy Leonard

Here, I’m standing on a 2x4.

photo by Andy Leonard

Look at the left hand involvement!

photo by Deborah Thomas

In February of 2009, I got back on my bicycle. Oh what a feeling! I found I could ride like I did before my stroke. I rode for 2 & 1/2 hours the first day. A couple days later I rode 20 miles on the beach.

photo by Deborah Thomas

Putting the bike on top of the car proved harder than biking.

photo by Deborah Thomas

I knew I had made a good recovery. I didn’t know the level of my recovery until I started talking to stroke professionals about my Stroke Recovery DVD idea. One group told me they thought I must have had my stroke 3 years ago to be able to bike. That day when I decided to jump on my bike, I’m glad I didn’t know that I shouldn’t be able to do it.

photo by Deborah Thomas

Part of what I did in my recovery was due to naiveté. I was told to go home, get out of the wheelchair, and relearn how to walk, so that’s what I did. It is another case of you don’t know what you don’t know.

photo by Linda Mathias

In May of 2009 I competed in the Macon County Senior Games. As you recall, I had my stroke training for them the year before, so this was completing the circle for me. If I’d known I would be only about a minute behind the overall winner, I probably would have trained more. I also might have ridden my road bike, not a mountain bike with knobby tires.

photo by Linda Mathias

photo by Linda Mathias

But, no one else in my age group showed up, so I won 3 gold medals

photo by Deborah Thomas

and qualified for the NC Senior Games where I got my butt whooped by guys with $5,500 bikes who ride 350 miles a week.

photo by Deborah Thomas

My truck isn't worth $5,500 and I don’t drive 350 miles a week! But, I won my category, guys who have had a stroke.

photo by Deborah Thomas

I also rode in the NC Stroke Association’s Cycle for Life event last October. I was one of their letter writers, and helped them to raise money for stroke prevention. I had not ridden 24 miles in more than 10 years, and not since my stroke, but I knew I could do it. I did the Senior Games and Cycle for Life to draw attention to stroke recovery and my DVD project, not to me.

Ok, that’s the brief version of my recovery. But, I did learn a few other things along the way that I would like to share with you.

photo by Deborah Thomas

When I was at Care Partners, they preached "involvement" with your affected hand. That’s not an easy thing if you can't pick up anything or use your arm. First, I had to build up the strength and the coordination in my hand to be able to hold anything. I did this by squeezing putty and stretching rubber bands. I kept some of each in the car, so I could work my hand as my wife drove me to doctors’ appointments. I also did a lot of wrist-strengthening exercises with a hammer when I was just sitting around. When we went shopping, I walked around the big box stores, rather than sitting in the car or at home. Shopping carts make excellent walkers, if you need a little assistance.

In the beginning, I couldn’t touch my nose. I also had to build up my shoulder to where I had some range of motion and some strength. I did that by holding a light weight by my side and drawing circles with it, both clockwise and counterclockwise.

photo by Deborah Thomas

Once I got some function back, I could start to think about involvement. So, I began by getting the vitamins out of the cabinet with my left hand, like we did with the spindles at OT. I had trouble doing it, so I'd get them all down and then put them back. Get them down and put them back.

Every time I have trouble doing something, I do it over and over again until I am satisfied I am doing it right and my brain is patterned. I never quit. I always complete the task. I believe in brain patterning – psychological as well as physiological, and that success leads to more success.

I found things like driving,

photo by Deborah Thomas

lawn mowing,

photo by Deborah Thomas

rototilling,

photo by Deborah Thomas

and vacuuming to be beneficial because you have to hold something steady and steer. You can't do too much damage with a vacuum cleaner. Yes, I vacuum left-handed and I always will. I had to push myself continually to rebuild my stamina and found mowing was good for that. In the beginning, simple tasks and anything that used my left side drained me. But, eventually, I could ride my bike for a couple hours without stopping.

I got tired of how long it took to do all my exercises every day. So, once I achieved involvement, I tried to figure out ways to use my affected side in everyday tasks - integration. When you integrate, it's like free PT time, unlike pulling on a rubber band. If you balance on your affected leg while you are pumping gas, you are doing PT when you would otherwise just be standing around. And yes, I do stand on one leg when I pump gas.

photo by Deborah Thomas

Cooking is good therapy, too.

photo by Deborah Thomas

photo by Deborah Thomas

photo by Deborah Thomas

photo by Deborah Thomas

Everything is an opportunity for therapy. Don’t turn the bottle, turn the top and you’re doing OT! It’s not what you work with, but that you put in your time.

Sure, I know what shirts will fit over my hands with the cuffs buttoned. I didn’t say I don’t believe in using your cognitive skills to make life easier, I just don't shy away from any task, rather I embrace them. That’s how I’m going to relearn and get better, through time and repetition. I have all the time in the world – at least I’m still here. Am I discouraged by what I can’t do? No, rather I am encouraged by what I can do.

Once you reach a certain level, you have to work just to maintain that, let alone get ahead. Without putting in your time, stroke will recapture what you have gained. It’s not fair, but that is the way it is

photo by Deborah Thomas

When you first start walking it is important to watch your feet because you don’t have much of a sense for where they are in space and the smallest obstacles can throw you for a loop. As time goes on you look up further and further, next a few feet in front, then about 15, then 50. When I practice pattern walking I make sure I look at the horizon. I turn my head from side to side. I look at different things – mailboxes, flower boxes, license plates moving my head while I walk. On the beach, I walk with my eyes shut. I find this helps a lot with overall balance and was not easy at first, like everything else. I find I have to pay attention to this or I do not automatically look at the horizon. I am stuck in the middle ground and still have to make an effort. I wrote this a year ago, but it is still the case today. When they are ready, encourage stroke survivors to start the looking up process.

When I talk to stroke survivors I tell them, if you compare the way things are with the way things were, you will be constantly disappointed.

I tell them your old life is gone, dead. But, that’s ok, you’ve been given a new one and you are in charge of your recovery. You have to look at it that way, and if you take charge of your attitude, you can change your life. I tell them to throw away the old rulers, relish your new life,

and don’t measure it against the way things were.

When you’ve had a stroke, well-meaning people often ask you what percentage are you back to compared to where you were? I’m not sure anyone can make a full recovery, but, of course, they hope to hear you say you are at 100%, or even better than before. They are a little taken aback when I answer, “I’m at 100% in my new life, my old one doesn’t exist anymore.” A little explanation and they get the fact that, in an instant, stroke changes your life forever, and as survivors, we can be ok with that.

photo by Gary Wein

When I climbed to the top of a mountain 4 months into recovery, got full range of motion back in my shoulder, or got back on my bicycle at 10 months, people told me what I had done was "remarkable". I politely thanked them, but never felt that way myself. I thought about it a lot. Then, I started talking to other people who had done things that I considered "remarkable" in their recovery or in dealing with what life throws at us. None of them regarded what they did as "remarkable". One cancer survivor said, "What was I supposed to do, lay down and die?" I found this interesting and thought about it more. Maybe the fact that no one who does "remarkable" things considers them to be "remarkable" is the key to being able to do them at all. It all comes back to attitude, yet again.

photo by Deborah Thomas

If you have not had a stroke, you probably don't realize what it is like to live with one. I'm explaining this, not complaining. Since my stroke 2 years ago, I've had 6 or 7 moments where I forgot for a few seconds that I have had a stroke. That adds up to maybe a minute. I have to think about every step, every curb, every stair, holding things, my balance, etc. In the beginning, it felt like I was walking around with a cement bag on my shoulders, ever-present and adding to the difficulty of all tasks. Well, life has gotten easier, and the cement bag may be gone, but the stroke is still ever-present. When I can't do something as easily as I could before and I get frustrated, I simply remember I am alive. That seems to be enough.

Anniversaries are a funny thing and you must be careful in how you look at them. At first, you think about them in terms of how your life changed. You tend to remember what you used to be able to do, not what you CAN do. Some people say anniversaries are hard. I was around some of that thinking at six months, and guess what; my six-month anniversary was really hard. By the time I got to a year, I had changed how I looked at things and I refused to be influenced by anyone else's thinking. I decided when you looked at the date of your stroke as the day you lost something instead of the beginning of a new life you might not have gotten to live, that you made it into a loss, instead of the celebration it should be.

So, I decided that on April 4, 2009 that I would CELEBRATE my first anniversary. I thought about what I loved to do the most in this world and decided that was to be out taking pictures on a beautiful day. I went to a couple of conservation properties to take pictures for the Land Trust for the Little Tennessee calendar that I do every year. That day, I took one of my favorite pictures, “Redbuds and Scooters”. It was a glorious spring day and I reveled in being alive.

They are so cute, I couldn’t resist?

photo by Deborah Thomas

This year, when I thought about how to celebrate my second anniversary, I thought about how much I love gardening and photography, so I decided I would do both.

photo by Deborah Thomas

We are turning our back yard into organic vegetable beds and a butterfly garden, so in the morning we worked on those. Look at that left-hand involvement!

For the photography portion of the day, I decided to go to Brookgreen Gardens and take pictures of the spring flowers and their new butterfly exhibit. Brookgreen Gardens and Huntington Beach State Park are across the street from each other and are Archer and Anna Hyatt Huntington's gift to the world. After the Cowee Mound in Franklin, NC, it's my favorite place, and just 3 miles down the road from our new home. I took my own advice, from another speech, and went out to find the beauty in the world.

photo by Andy Leonard

This is a phenomenon that I first discovered trying to regain speed. I opened and closed my hand as fast as I could. After a few times, I could feel the effort it took in my brain – right here on the opposite side from my stroke. No one seemed to be familiar with this. My neurologist seemed to understand what I was describing. When I asked him whether or not it was a good thing for me to push my brain, he said he thought it was. I find I run out of brain when I engage in physical activities using my left side. The more I complicate things, the more likely it is to happen. So, if I stand on a ladder holding a stake and a level with my left hand, lean over and pound it into the ground with a sledgehammer, I will run out of brain fairly quickly.

I feel like I am woozy, have no balance, and sometimes my visual world spins, but I have not fallen. I stop, shake it off and go right back to it. Another thing that causes me to run out of brain is when my entire field of vision is moving. This has happened several times. One example is if I stand on the edge of the surf with the incoming and outgoing water filling my field of vision.

I have spoken with others in stroke recovery about this and have found many who experience running out of brain. Sometimes at first they will say I’m not sure what you mean and then proceed to describe the same thing in different words. I have a friend who had a stroke and has aphasia. It happens to him when he is struggling for words. My observation is it occurs when one is pushing their brain in their particular recovery, whatever the deficit is. If anyone knows more about this, please see me later.

photo by Deborah Thomas

I’ve just past the 2-year mark. I don’t believe a door shuts on recovery – not at 18, months or 2 years or ever. I believe as long as you make the effort, you will continue to reap the rewards. I believe you are either going forward or backward. In winter when it’s hard to exercise outside, I notice I lose some of what I have gained and have to work to regain it when the weather warms up.

But, I’m in it for the Long Haul, whatever it takes. And, with 750,000 strokes every year and no end in sight, we all need to work together for better stroke recovery resources because we are all In for the Long Haul.

OK enough recovery, here’s my idea.

photo by Deborah Thomas

When I left CarePartners I discovered a gap that exists for stroke patients who now have to manage their own recovery, rather than have it orchestrated for them. It’s like the TV commercials with the Verizon guys. Everyone is there for you in the hospital, but no longer covering your back when you are released. It should be noted that at the time of my stroke and release from CarePartners, I lived an hour and a half from their facility in Asheville, and I could not drive for a few months, so getting back there was not easy. That ruled out participating in any programs they might have had and left me with rural outpatient PT & OT. And, here are no stroke doctors per se. People who have a heart attack have cardiologists. People with cancer see oncologists. There are even doctors who specialize in all the various types of cancer, but not stroke. Once your brain is stable, you are done with your neurologist. Normally, you see them a couple times in the hospital and once in the office after 3 months, and they “release” you. I went to see mine a couple of times after I was released because he was willing to spend time with me and gave me answers. We need better information and resources for those in stroke recovery, so they don’t feel lost and abandoned.

In my quest, I went to my family doctor, an internist, a blood pressure specialist, an orthopedic surgeon, back to my neurologist, PTs, OTs, a counselor, and a psychiatrist. I still don’t have the answers I would like to have. Somewhere they exist. That was the first thing that I thought of in terms of a Stroke Recovery DVD. Couldn’t many of the questions those engaged in stroke recovery have be answered by doctors and therapists and put in one place?

The second thing that occurred to me, and it’s extremely appropriate to video, was I wanted my PT and OT in my living room on my TV to go over those new exercises we’d just learned. It’s hard to remember all the things you are supposed to do and how to do them. Also, I wanted to have someone to do it along with – my own personal therapist.

The importance of attitude in recovery kept playing a larger and larger part in my thinking about this DVD, so it will be a key section and an underlying theme throughout. I decided I should interview some famous people like Chuck Swindoll with the Attitude quote, Ram Dass who wrote “Be Here Now” and was the subject of a documentary “Fierce Grace” about his stroke, and Dr. Jill Bolte Taylor, who wrote “My Stroke of Insight. Of course, I plan to seek out inspiring recovery stories from not-so-famous people – let me know if know of any.

I also thought about a section for caregivers. Stroke affects families, not just the person who had the stroke and family caregivers have no idea what they are in for. Whether it was a “minor” stroke, although I’m not sure there is such a thing, or if major adaptations to life and home are required, they need help.

The purpose of this DVD would be to bring together in one place as much of the information as possible that someone in stroke recovery needs for his or her total recovery.

So, I wrote up my proposal and headed out to talk to stroke professionals. I got an overwhelming response from the inpatient & outpatient rehab facilities, the stroke & neurology departments, and the stroke centers I spoke to. Funding in today’s economy is another matter.

I’ve explored some funding options. I guess I hoped I could find a single sponsor, but that has not happened. I am forming a non-profit, so contributions will be tax deductible, and hope to fund it through a consortium. Any ideas you have, or potential partners you know of, would be greatly appreciated.

I would like to end with a story. I’ve been speaking 45 minutes and statistically 60 people have had a stroke during that time, over 700,000 every year. That is a daunting number. And, when we talk about numbers, we need to remember each one of those numbers is connected to a person whose life has changed forever.

photo by JoAnn Wieters

Remarkable

2010-04-16T09:05:00.000-07:00

When I did things like climb to the top of a mountain 4 months into recovery, get back on my bicycle at 10 months, or get full range of motion back in my arm, people told me what I had done was "remarkable". I politely thanked them, but never felt that way myself. I thought about it a lot. Then, I started talking to other people who had done things that I considered "remarkable" in their recovery or in dealing with what life throws at us. None of them regarded what they did as "remarkable". One cancer survivor said, "What was I supposed to do, lay down and die?" I found this interesting and thought about it more. Maybe the fact that no one who does "remarkable" things considers them to be "remarkable" is the key to being able to do them. Maybe it all comes back to attitude, yet again.

It had to happen sooner or later

2010-04-08T15:53:00.000-07:00

I made it 2 years and 3 days without falling. Thursday, April 8th, I fell in my garden. I'm not sure what happened, or I might have prevented it. We're laying out the garden, so it is a minefield of string and stakes. Luckily, I didn't fall on the stakes that are marking the beds we are putting it. But, I did fall on my left elbow which poked into my ribs pretty good. I broke 3 ribs once, so I know that they are not broken, but anyone who has injured their ribs will tell you it's no fun at all. You ribs are connected to everything you do, including rolling over in bed while you sleep, or try to.

With all the 1000s of times I lost my balance and recovered and thought I might fall going up and down steps, climbing on ladders, and so on, it surprised me to just take a regular fall. At first I thought I was relieved that it had finally happened, but then I realized I had to think about not falling for the rest of my life, oh well.

If you have not had a stroke, you probably don't realize what it is like to live with one. I'm explaining this, not complaining. Since my stroke 2 years ago, I've had 6 or 7 moments where I forgot for a few seconds that I had a stroke. I have to think about every step, every curb, holding things, my balance. etc. In the beginning I described it as walking around with a cement bag on your shoulders, ever-present and adding o the difficulty of all tasks. Well, life has gotten easier, the cement bag may be gone sometimes, but the stroke is still ever-present. When I think about it, or it bothers me, or I can't do something as easily as I could before, I simply remember I am alive. That seems to be enough.

My second anniversary

2010-04-08T09:49:00.000-07:00

My second anniversary was Sunday, April 4th, 2010. Anniversaries are a funny thing and you must be careful in how you look at them. At first, you think about them in terms of how your life changed. You tend to remember what you used to have and be able to do, not what you DO have and CAN do. Some people say anniversaries are hard. I was around some of that thinking early on, and guess what, they were hard. By the time I got to a year, I had changed how I looked at things and I refused to be influenced by anyone else's thinking. So, I decided that on April 4, 2009 that I would CELEBRATE my first anniversary. I thought about what I loved to do the most in this world and decided that was to be out taking pictures on a beautiful day finding the beauty in the worlda nd trying to capture it. So, I went to a couple of conservation properties to take pictures for the Land Trust for the Little Tennessee calendar that I do. That day I took one of my favorite pictures of 2009, Redbuds and Scooters. It's this month's (April 2010) shot in the calendar. It was a glorious spring day and I reveled in being alive and able to appreciate it.

Redbuds and Scooters (click for a larger view)

While I was there, I took a pictures of the lambs. They are so cute, who could resist? (click for a larger view)

This year, when I thought about how to celebrate my second anniversary, I thought about gardening and photography, so I decided I would do both. We are turning our back yard into organic vegetable beds, so I worked to finish the last 5 of 12 beds we are making this year. The other 7 have already been planted.

After edging and rototilling the grass, it's time to rake it and remove it. Look at that left-hand involvement! I had a right-side stroke, so my left is my affected side. I try to use my hand and arm in everything I do, rather than let it hang there. photo by Deborah Thomas

Once the grass is gone, it's time to till deeper. I've found that mowing the lawn, roto-tilling, and other yard work that uses both hands is good physical therapy. If you are in stroke recovery, your spouse will be glad if you take in up for PT!
photo by Deborah Thomas

We have 4 cold frames that we grow lettuce and arugula in. We use old sliding-glass doors for the covers. They have double-pane glass and are fairly easy to come by. We have fresh lettuce right through the winter. I've scraped snow off the ones we had in the NC mountains and picked arugula in February!
photo by Deborah Thomas

For the photography portion of the day, I decided to fo to Brookgreen Gardens and take pictures of the spring flowers and their new butterfly exhibit. Brookgreen Gardens and Huntington Beach State Park are across the street from each other and are Archer and Anna Hyatt Huntington's gift to the world. After the Cowee Mound in Franklin, NC, it's my favorite place, and just 3 miles down the road from our house. I took my own advice from my speech to Life Care Centers of America and went to "find the beauty".

http://strokedvd.blogspot.com/2009/06/speech-to-life-care-centers-of-america.html

The Oak Alley at Brookgreen Gardens, formerly Brookgreen Plantation. These live oaks are hundreds of years old. They are traditional in the alley from the road to the plantation house. April 4, 2010 (click for a larger view)

"Sampson and the Lion" with Iceland poppies. April 4, 2010 (click for a larger view)

Painted Lady on an apple slice. April 4, 2010 (click for a larger view)

Painted Lady. April 4, 2010 (click for a larger view)

Zebra Longwing or Zebra Heliconian. April 4, 2010 (click for a larger view)

2009 North Carolina Stroke Association's Cycle for Life

2009-12-01T08:37:00.000-08:00

The start, with Robin Jones of Mission Neurology in Asheville on the right in the light blue shirt. She had never ridden 24 miles and made it.

I had not ridden 24 miles in more than 10 years, and not since my stroke, but I knew I could do it.

On a beautiful fall day the North Carolina Stroke Association held their 2009 Cycle for Life at Hanover Vineyards in Yadkinville, NC. I rode the 24 miles in about an hour and a half, which is about 16 miles per hour. I was happy with that.

My brother Glenn started the You Go Ralph Preston Fund, and since he donated enough to be a sponsor, it was on the back of all the T-shirts. It was kind of strange seeing my name on all the T-shirts. Thanks Glenn! You got me good.

Special thanks to all my family and friends. We raised $1,700 at last count!

Dan & Judy McConnell
Harvey & Janice Fouts
Ronnie & Judith Neumann
Denny & Kathy Hammack
Beth & Eric Moberg
Dick & Gill Heywood
Margaret & Al Ramsey
Russ & Robin Langley
Merritt & Lucille Fouts
Niek & Janis Bergraat
Bob & MaryBelle Wells
Helen Thomas
Rick & Jeanne Falknor
Pat Mercadante
John & Jean Crose
Forest & Jewel Tindall
Kathy Fannin
Glenn Preston
Barbara McRae
Rick & Lita Hinson
Bill Fouts
John & Marta Thomas
Pratiba & Yogi Kakad
Bob & Nancy Tolles
Susan Johnson
Peter Denning
Johnny & Mary Jeff Pearce
Fred Greaves, Jr.
Kate Waterfall
Charlie & Laura Vargas

Here's more on the tour (will make it a hyperlink soon)
http://www.ncstroke.org/biketour2009.html

2009 North Carolina Senior Games

2009-12-01T08:18:00.001-08:00

“They” say I shouldn’t have the balance to ride my bike. Luckily, “they” weren’t there the last February when I decided to throw my leg over my mountain bike and ride off down the beach. I was training for the local Senior Games last year when I had my stroke on my stationary bike. So, that’s why I did them this year and went on to the NC Senior Games where I got my butt whooped by guys with $5,500 bikes who ride 350 miles a week. My truck isn't worth $5,500 and I don’t drive 350 miles a week! I did ride the 10K in less than twice my 5K time, so I felt good about that. I won my category, guys who had a stroke, as I was the only one there that had a stroke.

Speech to Tri-State Stroke Network on September 23, 2009

2009-12-01T07:03:00.000-08:00

Laurie Mettam, the Executive Director of Tri-State Stroke Network asked me to speak to their group and I did on September 23, 2009 via a conference call. My PowerPoint was on their server, so those that wanted to could follow along. I have no idea how many people were on the call. It's a little strange talking to a group you can't see. And, I had to tell people what they should be looking at and when to advance the PowerPoint. But, it went well. It was only slightly different than my speech at Life Care Centers of America. If you want to read it and see the PowerPoint, it's further down on this blog.

Ralph,
I understand that your presentation was a great success. Hopefully, it will jump start more movement toward getting funding for your DVD. You are incredibly talented and successful on so many levels.
Warm regards, Laurie Mettam

Hi Ralph, I just wanted to take time out to thank you for sharing your story and making the presentation today for the NC Stroke Care Collaborative (NCSCC) and the Tri-State Stroke Network (TSSN). It was important for us to be reminded of the human side of a stroke and that, in addition to all of the clinical information that is important to help people with their recovery, there are many important supportive actions that are necessary to keep stroke survivors motivated to live up to their full potential. I very much appreciated your positive attitude and approach to recovery. You were an inspiration to me and I am certain to the other participants. I wish you all of the best with securing funds to make the stroke video that you aspire to create to help others who must walk down a similar recovery path to your own. Take care, and again, on behalf of the NCSCC and the TSSN, I thank you!
Sylvia W. Coleman, NC Stroke Care Collaborative

My Story in North Carolina Stroke Association's "Update Stroke"

2009-07-17T10:29:00.000-07:00

I was asked by the North Carolina Stroke Association to write about my recovery and my Stroke Recovery DVD project. Here is the article from their "Update Stroke" publication. I am also a letter writer and rider in their Cycle fro Life event this October. There is an entry on the event below, complete with links about the ride. Scroll down or click here. Click it, it's a hyperlink.. Here's a link to the North Carolina Stroke Association Click it, it's a hyperlink. And, here's one to Update Stroke. Click it, it's a hyperlink.

Telling the Story
By Ralph Preston, Asheville, North Carolina

As with everyone who has had a stroke, my world changed the day it happened to me. On April 4, 2008, the day began, like so many others, with me on my stationary bicycle, pedaling hard as I trained for the upcoming Senior Games. As I neared the end of my ride, I became aware that my left leg was not working right. The terrifying trip to the hospital and the diagnosis of right-side hemorrhagic stroke seemed unlikely to happen to me, a 58-year-old who was in such good physical shape. But it did happen to me. I became a statistic:one of over 700,000 people per year who experience a stroke.

I was hospitalized at Mission Hospitals in Asheville, NC, where I progressed from the neurological wing of the hospital to the rehabilitation facility at CarePartners, which is located in Asheville. I graduated to the outpatient physical and occupational therapy sessions as I was discharged to my home in Franklin. Once I was medically discharged, and on my own, I began to ask many questions about my experience. I was seeking answers that could give me a clear picture of what I had experienced. Each physician and therapist I saw in during the post-stroke phase had a piece of the puzzle, but it seemed that no one had the whole picture, due to the overwhelming complexity of the stroke syndrome.

I began to realize the many questions I had might be the experience of others in stroke recovery. Since my physical, mental, and emotional recovery was a priority, I set out to regain as many of my pre-stroke abilities as I was able. I am a videographer and still photographer by profession, and I wanted to be able to take pictures with my camera again. While working out every day was difficult and time-consuming, I felt strongly that there was nothing more important. I kept a positive attitude and worked every day to rebuild my body.
Starting with assisted laps in the driveway, I worked my way up to hiking five miles on the Appalachian Trail four months after my stroke. I was back on my bicycle and cycling within 10 months, pedaling as much as 20 miles at a time. I walk almost every day, and I work out to an exercise video, as both help to restore coordination and balance. I recently competed in the Macon County Senior Games by cycling 10 kilometers in 24 minutes and coming in second.

I will compete in the September NC Senior Games in Raleigh, and I will be will be cycling in the NC Stroke Associations annual benefit ride, “Cycle for Life”, held each year at Hanover Park Vineyard, in Yadkinville, NC. I will be writing letters for the event in my effort to raise money for the NC Stroke Association’s Grant Program.

My stroke opened up an opportunity as I navigated through the recovery process. I began to piece together answers to the questions most stroke survivors have, as they try to live with change, and begin anew. With my professional background as a video producer and director with over 30 years of experience, I decided to use my talents to gather information about stroke syndrome and provide it to the people who need it most: people in stroke recovery and their caregivers. I am planning a DVD featuring stroke professionals answering as many of these questions as possible. Several levels of exercise will be featured and guided by physical and occupational therapists. I believe a positive attitude plays such a large role in recovery. To that end, persistence and hope will be underlying themes of the DVD. This project will help the thousands of people actively engaged in recovering from stroke, as they meet the day-to-day challenges toward healing.

Ram Dass agrees to be interviewed

2009-06-22T14:04:00.000-07:00

Yes, you read that correctly.. I asked him if he would do an interview for my Stroke Recovery DVD and he agreed. You get nothing of what you don't try for, so I decided to write to him. He is the spiritual leader for my generation and the author of "Be Here Now". He had a stroke in 1997 and was the subject of the PBS documentray "Fierce Grace". I am currently reading his book "Still Here: Embracing Aging, Changing, and Dying" to prepare for that interview. I feel he will add a lot to my Stroke Recovery DVD!

For more information on Ram Dass go here RamDass.org
Click it, it's a hyperlink.

To purchase "Still Here" go here Still Here
Click it, it's a hyperlink.

For more information on "Fierce Grace" go here Fierce Grace
Click it, it's a hyperlink.

To purchase "Fierce Grace" go here Fierce Grace
Click it, it's a hyperlink.

Here's a search of all his work Ram Dass
Click it, it's a hyperlink.

To see a clip from "Fierce Grace" go here Fierce Grace clip
Click it, it's a hyperlink.

Here's my letter to him.

Ram Dass,

I am a video producer who, after having a hemorrhagic stroke on April 4, 2008, discovered the gap that exists in stroke recovery once you leave the rehab hospital. So, I decided to try to bridge some of this gap by creating a DVD on stroke recovery. TriState Stroke Association is going to apply for a grant from the Centers for Disease Control to pay for the video production. If that does not come through, I will figure out how to raise the money or pay for it myself.

Shortly after my stroke, my daughter bought me a copy of "Fierce Grace" and I first watched it while I was still in a rehab hospital. I have watched it several more times since then and found a lot of wisdom and truth in it. I would like to interview you for this project, if you are willing. I would like to talk about the importance of attitude in stroke recovery, some of your experiences, and about making sense out of some of the things that happen to us in life. I'm sure there are other areas of conversation that would come up in the interview. I am also more than open to any ideas you might have.

I know you are a busy person, but I also know that you have been impacted by stroke and probably would like to impart some wisdom to others on a stroke recovery journey similar to yours and mine. Proceeds from the video would support stroke recovery and prevention. I've attached my proposal (and pasted in this email), a quote on attitude, and a few pictures that tell the story of my recovery. I look forward to hearing from you.

Regards,
Ralph Preston

Here is his reply.

Yes, I am interested in interviewing for your DVD.
Namaste,
Ram Dass

Dr. Jill Bolte Taylor declines an interview

2009-06-22T10:16:00.000-07:00

For more information on Dr. Jill bolte Taylor and "My Stroke of Insight"
Dr. Jill bolte Taylor and "My Stroke of Insight"
Click it, it's a hyperlink.

To purchase "My Stroke of Insight" hardcover go here My Stroke of Insight - hardcover
Click it, it's a hyperlink.

To purchase "My Stroke of Insight" paperback go here My Stroke of Insight - paperback
Click it, it's a hyperlink.

Help me to convince her by posting your comments here.

My letter to her.

Dr. Jill,

I am a video producer who had a stroke 14 months ago tomorrow. I am producing a DVD on Stroke Recovery to help bridge the gap that exists when you get out the rehab hospital and have to manage your own recovery. I made quite the recovery due to my attitude and the hard work I was able to do because I maintained a good attitude. Rather than explain it all here you can go to my blog and read about it, My idea is there in detail, too.

www.strokedvd.blogspot.com

What I would like to know is would you be willing to do an interview with me for the DVD. I would ask you questions about attitude, perseverance, what you did when you were down, what you did to keep from getting down, etc. I feel that attitude is key to any recovery.

I would also reread your book and come up with some other questions. By the way, my wife, who is a writer herself, also read it and said you are a very good writer. I would work with you in any way you desire. I would come to you or meet you somewhere in your travels. It would take between half an hour and an hour, depending on how much time you could spare. I could submit questions in advance. You can tell me your conditions.

Everyone I have spoken to at rehab hospitals, neurological units, and stroke centers loves my idea. I am working through Tri-State Stroke Association, because they offered to write a grant. We are trying to get the Centers for Disease Control to fund it. If that is the case, the DVD will be given away (or sold for duplication and shipping costs only). In any case, I am not looking to profit from this or off of you. I want to help as many people as I can through the stroke recovery process. There would be an appearance fee that we will be paying. You can donate it to your favorite organization, foundation, or charity, if you don't want it yourself.

I know you are a busy person. I think you have a lot to contribute. I think it would benefit those in stroke recovery to hear your thoughts. You know how important that can be when you are recovering. Ram Dass has agreed to an interview. "Fierce Grace" and "My Stroke of Insight" were big influences on me and helped me. That is why I am asking you. I have asked Chuck Swindoll, but not heard anything. I have lived by his Attitude quote. I am also going to ask Dr, Wayne Dyer, who is a friend of Ram Dass and lives near him in Hawaii. I intend to ask Lance Armstrong, who did not have a stroke but knows a thing or two about attitude and recovery. When I saw Bob Woodruff on ABC last night I thought he might also be a great interview. He has journeyed far. Feel free to suggest anyone else you might know. So, there you have it.

Regards,
Ralph Preston

Her reply from Dr. Katherine Domingo

Hello Mr. Preston --

Thanks for your message and sharing your story and idea. Dr. Taylor is certainly cheering you on with anything that may be of help and value to stroke survivors. At this point, her schedule is very busy and she is not in the position to accept this wonderful offer. However, she does wish for great success and is grateful for the work you are doing to help stroke survivors--and congratulates you on your own recovery and rehabilitation!

Thanks again,
Kat
Dr. Katherine Domingo

"Please take responsibility for the energy you bring into this space." ~ Jill Bolte Taylor

North Carolina Senior Games

2009-06-20T07:47:00.000-07:00

Since I was the only one in my age group that showed up to bicycle, I won 3 gold medals at the Macon County Senior Games and qualified for the 2009 North Carolina Senior Games. I will ride my bike in them to draw attention to stroke awareness. They are Sunday Spetember 27, 2009 in Raleigh.

North Carolina Stroke Association's Cycle for Life

2009-06-20T07:31:00.000-07:00

I am going to participate in the North Carolina Stroke Association's Cycle for Life event on Saturday, October 3, 2009, at the Hanover Park Vineyard, Yadkinville, NC. I am one of the "letter writers" for the North Carolina Stroke Association for this event. Here is the letter I'm sending out to family, friends, and business associates. If you want to help out, you can too. Just send a check to North Carolina Stroke Association at P.O. Box 571002, Winston-Salem, NC, 27157-1002, and put my name in the memo line. You can also come out and cycle or enjoy a day at the winery, have lunch, and do a 1-mile walk around the grounds.

Dear...

I would like to thank all of my family and friends who have supported me in my journey these last 15 months. The outpouring of love and support I have received means a lot to me, as did the cards, phone calls, emails, discussions, and hugs. I thank you all.

Most of you know about my stroke, my recovery, and my mission to help others through the recovery process. One good way to do that is through stroke prevention. If you don’t have a stroke, you don’t have to recover from it. Stroke prevention is exactly what The North Carolina Stroke Association does through their community grant programs.

In talking with people since I had my stroke, I’ve realized how prevalent stroke is. Everyone I talk to knows someone whose life has been affected by stroke. I’m sure you do, too. It not only changes the lives of the affected individuals, but families as well.

I’ve worked hard to regain my abilities. I was able to get back on my bike and ride 10 months after my stroke. Because I can, I’m going to ride my bike to help others. So, on Saturday, October 3, 2009, I’m going to participate in The North Carolina Stroke Association’s 6th Annual “Cycle for Life 2009” bike tour to raise awareness and money for their stroke-prevention efforts. Here’s where you come in. I’m asking for your financial support as I ride.

Many of you know how much I loved running and cycling prior to the stroke. It will be my great pleasure to show that it is possible to make physical progress through perseverance. I will be one of only four riders who have experienced a stroke.

With your support, we can save thousands of lives by preventing stroke. Please help me to make this a reality. You may make your check payable to The North Carolina Stroke Association and mail it in the self-addressed envelope. Your contribution supports The North Carolina Stroke Association’s Grant Program. In 2008, this program awarded $40,000 in grants to rural hospitals to implement stroke-prevention programs. It is a 501(c)3, so your contribution is fully tax-deductible.

I hope you are able to help this worthy cause. And, if you want to enjoy a beautiful autumn day at a North Carolina winery, come on out to Hanover Park Vineyard and cheer on the riders.

Sincerely,

Ralph Preston

P.S. If you want to find out more about Cycle for Life 2009, visit North Carolina Stroke Association Click it, it's a hyperlink. Or, Cycle for Life 2008

On-line registration will be avaliable July 1st
Cycle for Life...2009 bike tour registration brochure
Cycle for Life...2009 Team registration form
Cue sheets and Maps for: 65 mile course, 40 Mile course, 24 Mile course, 7.5 Mile course

Speech to Life Care Centers of America

2009-06-03T10:49:00.000-07:00

Monday, June 1, 2009, I spoke to a group of Life Care Centers of America rehab hospital directors in Cleveland, TN. I was honored to be asked. I have to say they are the warmest most genuine group of people I have met lately. I suspect it is part of their corporate culture. Here is my speech, without the ad libs and live demonstrations.

By the way, I recently discovered you can click on the pictures here for a larger view. I took the pictures, unless otherwise noted.

My name is Ralph Preston. I am a videographer and still photographer. I live over the mountains in Franklin, NC. These are pictures I took there.

You can see more of my work at my website http://www.ralphpreston.com Click it, it's a hyperlink.

I work as a video technical director at meetings like this all over the country, setting them up, testing everything, and then living backstage behind the curtains. Check 1 2, Check 1 2. That’s what I usually do at the podium. So, what am I doing out in front of the curtains?

Well, I had a stroke a little more than a year ago and I have made quite the recovery due to my attitude and the hard work I did. Anyone who thinks I’ve recovered 100% hasn’t seen me carry 2 full glasses, fold laundry, tie a tie, or wrestle with the dreaded zip-lock bag. Anyway, I’m here today to tell you my story and some of what I learned about attitude & hope, PT, OT, rehab, the road to recovery, and the gap that exists once a stroke patient is released from a rehab hospital to manage their own recovery. I am also going to tell you about an idea I have for a Stroke Recovery DVD that has become my mission.

When I agreed to come here today, I had no idea they would schedule me for an hour. It’s not that I can’t talk for an hour, just ask my wife. But, I wanted to make this meaningful for you. A lot of people have asked me exactly how I made my recovery, so some of that is included. Since I am a photographer, I thought I’d entertain you a little with pictures I’ve taken since my stroke. Some help tell the story and some are for your enjoyment. This is the first time I have given a speech, so bear with me.

photo by Bo Wood

So, how could a 58-year old in good shape have a stroke on his exercise bike training for the Senior Games? It happened because I wouldn’t listen. Well, as much as I hate to admit it, my stroke was completely preventable. I was a stubborn guy with marginally high BP who didn’t want to take the medication and who wouldn’t listen to his wife, not even when a brother-in-law had a stroke at 53 and she told me, “You are going to have a stroke like Steve”. My attitude was these things happen to “other people”, not to me. I thought I was somehow bulletproof when it comes to getting hurt, getting sick, even aging – you know the type. Men, we only go to the hospital if we can’t stop the bleeding ourselves. You know the famous line from Monty Python “It’s only a flesh wound”. Well, I found the hard way I am not bulletproof. I tell people now I am one of those “other people”.

And so, I ended up like this. I spent 5 days in the Neurological Unit at Mission Hospital in Asheville, NC and then I spent 17 days at CarePartners, a rehab hospital also in Asheville.

One of the first things I did at CarePartners was have my wife, Deborah, bring me my still camera. I took pictures of the flowers around CarePartners one-handed and from the wheelchair. I took my camera to OT and had them show me the exercises I should do to be able to use my left hand on the camera. It seemed everything had been stripped away from me. I wanted to immediately reconnect with one of the important things in my life, my photography. When I did, it made me feel like things would be o.k.

One thing I decided early on was that I wasn’t going to try to figure it all out. It was done. There are no do-overs in life. I also decided that I wasn’t going to blame anyone or anything in the chain of events leading up to my stroke, especially not myself or God. I decided that was a slippery slope with nothing but anger and self-pity at the bottom. I decided not to even go near the edge. And then a friend gave me a quote on attitude. She had read it to me when we first spoke on the phone after the stroke and she mailed a copy to me. I’d like to read it to you.

Attitude
“The longer I live, the more I realize the impact of attitude on life. Attitude to me is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness, or skill. It will make or break a company…a church…a home. The remarkable thing is you have a choice every day regarding the attitude you will embrace for that day. We cannot change our past. We cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is to play on the one string we have and that is our attitude. I am convinced that life is 10 percent what happens to me and 90 percent how I react to it. An so it is with you.!”
Charles Swindoll

Attitudes is excerpted from the sermon, Strengthening Your Grip on Attitudes, (SYG7A) by Chuck Swindoll. Copyright © 1981 by Charles R. Swindoll, Inc. All rights reserved worldwide. Used by permission. The complete sermon can be heard on-line at www.insight.org

I have lived by this quote since I first heard it. Sure, I have my moments, but they are moments.

So, I threw myself at daily PT, OT, Hand & Arm, and pool therapy sessions. One day no one came for me to wheel me off to PT. That was a huge favor. I didn’t want to miss any of my therapy sessions, so I paddled on down myself using my feet, a trick I learned from my 90-year old mother. It’s never too late to learn from your mother. I couldn’t wheel because my left arm didn’t work well enough and I’d go in circles. But I could use my legs. This got me started doing everything for myself. I never let anyone push me anywhere after that day, except down and up the big dip on the way to the pool.

When I was waiting in the wheelchair, I did wrist & hand exercises. I insisted on completing everything and doing everything with good form, or I kept doing it until it was. I had great PTs and OTs. My PT, Kathy, adapted her teaching style to my learning style; I had no cognitive deficits, but some of your patients do and some even have aphasia. I’ve always been one for the details, but after the stroke I was even more single-minded, focusing on one thing at a time in my recovery. If you told me too many things at once, I would not be able to make my brain deal with it all. If I focused on one thing at a time, I would achieve it, and move on to the next task. Kathy once said, “We are trying to learn to forget how to walk”.

My OT, Robin, also saw how I learned and we tailored my therapy sessions around that. Both she and Kathy realized I needed to talk and understand what we were doing. They learned the best way to teach me was to show me, since I am a visual learner. They showed me, explained things, were very patient, and talked to me as a friend, something I needed. Both of these therapists helped me to achieve more through this.

So, the greatest gift you can give your patients is to adapt your teaching style to their learning style.

photo by Deborah Thomas

I said I wanted to walk out of CarePartners like a normal human being. I was worried a bit because I had not walked on my own when I made that announcement to my wife and to Kathy. I’ve done that a few times, as you will see. Announce something that’s a stretch, but within my grasp, and then I have to live up to it. I asked Kathy to walk out with me because I wanted her to share in my success, since she was a part of it.

My first solo walk was the day before I was to be released. We were headed for my wheelchair when I looked to my left and Kathy had let go of me 15 feet back, kind of like when you were five and you realized your dad had let go of the bicycle.

Other patients acted like they were going to return to their old life. Despite what they think, stroke patients cannot return to their old lives. I thought that for a while, yeah I’ll just kick this thing and get right back to where I was. But, by the time I was to leave CarePartners, I realized I could not go back to my old life. It simply did not exist anymore. And, I realized there’s nothing wrong with that! I told this to one of the nurses and then I just blurted out “I am going to be the best new me I can be.“

photo by Lisa Preston

It’s cute to have your granddaughter tie your shoes the first few times. But, what every stroke survivor wants is to be independent of other people, especially loved ones. It’s the old, “I don’t want to be a burden” thing, not to mention wanting to regain lost skills.

When I left CarePartners, I told myself I don’t care if it takes 1,000,000 steps to get better. That seemed like more than enough. Well, I did get a lot better before 1,000,000 steps, but I meant 100%. It seems I underestimated that a bit. I’ve taken more like 2 or 3 million and I’m still getting better, which means I still have deficits. Maybe it’s just a lifelong process and I need to look at it that way.

My wife teaches at the community college. The week I was released was the week of final exams, so she couldn’t take off to be home with me. My friend of 15 years, Andy Leonard, came and we spent the week getting me off to a good start. Andy was a Marine. He actually brought the USMC Fitness Guide book. I was worried. I’m thinking I’m trying to learn how to walk and can’t “Get down and give you 50”. But, Sergeant Andy had not come, just my friend. Andy also brought me a Total Gym. It was too difficult for me to get on and off it in the beginning, so I used it later.

But, in addition to his organization and determinedness, he also brought his love and patience and we designed a “program” for me, based on the handouts I’d been given and some things we put together. We went to the hardware store and got dowels between endless doctors appointments. We tested all the exercises together, Andy watching my form. He had this thing he would do. He would stick his hand up in the air and I was to poke the middle of his palm as best I could with my left index finger. He did this every time we passed. That first week set a good precedent for my recovery. I looked at it like a training program, like my job, and it was.

I got frustrated with the wheelchair after just a few days at home. My wife, Deborah, encouraged me to get out of it and fend for myself. And so a short era of “wall-walking” started. She and Andy helped me if I needed to get somewhere and couldn’t do it on my own. They also guarded me against injury, but they let me do things for myself.

So, my days consisted of wall pushups, shoulder raises with a pole, leaning on my affected side, circles, abduction, the hammer, putty, rubber bands. We walked in the driveway, Andy holding on to me at first and then I walked unassisted with a cane. 20 laps around my driveway make a mile. We walked 3 laps at a time at first, 4 or 5 times a day. I tired easily, despite the fact I had run 4 miles 2 days before the stroke and less than a month ago. I would lie down on the bed and relax and let my brain reconnect. I tried not to nap much, except after big events that really pushed me. I did not want to sleep my life away or avoid the work I knew I had to do. Everyday I did a little more than the day before and pretty soon I was walking farther and faster.

But there was some adjusting to do. I had to watch other people do things I was used to doing, like here in the garden. Soon, I got bored and walked around and then I got my camera and got down on the ground for the first time for this Foamflower shot.

photo by Anais

In May my daughter, Lisa, and granddaughter, Anais, came down and we all went to the beach to visit Deb’s mom.

photo by Lisa Preston

It’s healing to have your family around in difficult times. Special places can help, too. Huntington Beach State Park in Murrells Inlet, SC, is one of my favorite places on this earth and not just because we got married there.

Support from family & friends cannot be underestimated. In my case, Deb drove 3 hours to see me every day for 3 weeks when I was in the hospital and rehab, encouraged me to get out of the wheelchair, was supportive, was always positive, held me back when I got too gung ho, put up with endless explanations of what was going on with me, walked countless miles with me at whatever my pace at the time was, and never once complained. I know she had to be tired of me talking about the stroke. I know she hates the word “edgy”. I am a lucky man to have her in my life. Oh yeah, this is the spot where we got married 26 years ago, Atalaya Castle at Huntington Beach.

photo by Lisa Preston

photo by Lisa Preston

photo by Lisa Preston

When we were at the beach in May I could walk 1/2 mile, at best. I had to watch others walk to the jetty and back, one of Deb and my favorite walks and one we have done literally 100s of times. I thought to myself, “When we come back in August, I’ll walk to the jetty and back”.

photo by Lisa Preston

photo by Lisa Preston

But I did my dowel exercises and practiced squatting and getting up by taking endless pictures of Anais building sandcastles and playing in the surf. I found walking in and out of the surf a safe place to experience all kinds of balance and footing shifts. It took a lot of concentration and Deb held on to me when really big waves came. I wanted to swim, I was always a swimmer and it felt good, but my shoulder was weak. I took my reward in just being able to float in the ocean.

photo by Lisa Preston

When we came back to Franklin, we went walking (there’s that watchful eye) and butterflying (Anais and I share a love of butterflies) and ATVing. Try to start an ATV when you can hardly stand up. And, look who has got my back.

photo by Lisa Preston

photo by Lisa Preston

photo by Lisa Preston

Anais loved the Total Gym. She showed me how she could put her own hair back, but I still couldn’t. Tying shoes, and putting our hair back, I was relearning how to be 5 again.

photo by Lisa Preston

photo by Lisa Preston

I walked and walked and walked. I tied my own shoes. I started outpatient PT and OT and went twice a week to each. They pushed me there and taught me things I could and did do at home the other 5 days. I rarely missed a day of doing it on my own. I walked and did PT & OT exercises several times every day.

I did my first video and still shoot just 3 weeks out of the hospital. Imagine how scarred I was around all those people in such tight quarters. I avoided people in the beginning. I was afraid they would not see me and move in a way that might make me fall. There were loads of chairs I had to navigate around and I was scared I would hook my foot. Plus, I could barely operate the cameras with my left hand. But, I showed up and tried.

My brother and his family came down and we all rode the tourist train. Try walking on a moving train a month out of the hospital or sticking your head out the window to take a picture.

Soon I was walking without the cane, then the 1.2 miles to the end of my road and back. That took 1 hour and 2 minutes the first time I did it, now I can do it in 24 minutes, which is 3 miles per hour. I walked on my heels I walked on my toes, I hopped in place, I hopped from side to side, I hopped laps, I did heel raises, I practiced on stairs.

I was still watching others do things I used to do so easily. Deb learned how to bush-hog our land. She said it was “empowering” to be a “bush-hogging, tractor-driving mama”. She’s here if you want to talk to her about it.

In June, I did my first all-day shoot. I wasn’t sure I could stand up that long, but it was an important charity event, so I showed up and tried.

I found it very helpful to talk to a counselor and would recommend it to anyone in stroke recovery. One day my counselor asked me if I had hope for the future. I replied, "That's a silly question, there is always hope for the future." She said not everyone felt that way. A couple days later I went to the Cowee Mound, which is an ancient Cherokee village site and my all-time favorite place on earth. I was in awe of the beautiful day at this beautiful place and when I took this picture, it made me think how could anyone NOT have hope for the future. So. I named the picture "There is Always Hope for the Future”.

Before I had my stroke, I’d promised my nephew Geoffrey that I would shoot his wedding. I told him while I was n the hospital that I still planned to do it. So, off we went to CT to make good on that promise. I got pushed into some of my recovery, or I pushed myself. We stayed with Lisa in NY and went hiking a few times. These rocks are easy if you are 5, not so if you are relearning how to walk and balance. But, they were good training for things to come. Here they are, My 3 favorite girls. I had to get out in the middle of the creek to take this shot.

The wedding was held at a church with 2 sets of granite steps, which made me really nervous. Plus, there were 200 people there. You have to run around a lot at a wedding to not miss any shots. I made it through the wedding, the pictures after, and the reception, taking over 700 shots.

In July, I walked and walked and walked some more. I also tied my hair back for the first time. That was the last thing I couldn’t do for myself – independence! I also started shooting still pictures fairly regularly. I went to a conservation property and shot this picture, which became the cover of this year’s Land Trust for the Little Tennessee calendar. I’ve done a benefit calendar with the local land trust for the last 5 years.

While I was there, I was chasing butterflies, what a surprise. When I saw this grouping of coneflowers, I thought they would make a nice picture without the butterfly and I took some that way. The butterflies were everywhere, so I waited for one to land, took this picture, and a new perspective was born. Take a nice flower shot and add a butterfly or two.

I also videotaped oral histories on the Front Porch at the Franklin Folk Festival for 9 hours in the hot July sun. I was getting my stamina back.

photo by Deborah Thomas

photo by Deborah Thomas

August came and we headed back to the beach and like I had promised myself, we walked to the jetty. When we got there, I realized I’d been so focused on making it, I didn’t think about having to walk back.

photo by Deborah Thomas

photo by Deborah Thomas

photo by Deborah Thomas

photo by Deborah Thomas

When I made it back, I decided I wanted to do another of our favorite walks to Siler Bald in August to see the featherbells. And now, I knew I could make it.

Siler Bald is 2.5 miles out on the Appalachian Trail. It’s 1500 feet in elevation gain from the parking lot at Wayah Gap to the top. I used to make it to the clearing in 50 minutes. We walked it that August day in 60 minutes and I was surprised – almost 85% of what I did before. And, that was over the root, rock, reggae of the Appalachian Trail. We carried a picnic, water, and my camera.

photo by Deborah Thomas

As we sat there on the top of the mountain having a picnic on a beautiful day, I felt on top of the world. I knew then I could do most anything I set my mind to in my recovery. I knew that even if I recovered no more, I could have a satisfying life. That was a big concern of mine as I sat in a rehab hospital in a wheelchair.

We headed down after lunch to take pictures. Here’s the terrain. And, what we came for.

Once I could rack up the miles, I got into the Quantity or Quality debate. While I could walk many miles, my form was a lot like Chester on Gunsmoke, especially around the house or when I got tired. I got different opinions. But, then I called CarePartners and spoke with another of my PTs, Shannon, who told me to “walk on your heels and if you can, walk on your toes”. So, I walked a lap on my heels and then 3 regular and then one on my toes and then 3 regular and back to the heels over and over. I practiced what I called “pattern walking” trying to walk correctly with the slight kick of the foot, heel-toe pronation, walking “tall” on the affected leg – form over distance. Walking the correct walk pattern, while patterning my brain. I can tell you from experience, form is more important than distance.

When you first start walking it is important to watch your feet because you don’t have much of a sense for where they are in space. As time goes on you look up further and further, next a few feet in front, then about 15, then 50. When I practice pattern walking I make sure I look at the horizon. I turn my head from side to side. I look at different things – mailboxes, flower boxes, license plates moving my head while I walk. I find this helps a lot with overall balance and was not easy at first, like everything else. I find I have to pay attention to this or I do not automatically look at the horizon. I am stuck in the middle ground and still have to make an effort. When they are ready, encourage your patients to start the looking up process.

In August I took this 2nd new perspective flower and butterfly shot at the Cowee Mound, I call Meadow Dance. I told you it is a special place.

In September, I needed to shoot with my 26-pound Betacam for a Habitat for Humanity project in Charlotte, NC. I have been a volunteer for 22 years. Up until now I’d used a smaller video camera I have. It was time to see if I could do deep knee bends with the broadcast camera. (Yes, I could; for the first 5 or 6 hours, anyway.) My first shoot was at the 25-hour house. Volunteers from Bank of America, including former CEO & Chairman of the Board, Hugh McColl, built a house in 25 hours to celebrate Charlotte Habitat’s 25th anniversary. (He’s the guy in the blue helmet there on the left.)

photo by Andy Leonard

Another big build they had that month, also celebrating their 25th anniversary, was Building on Faith. Here I am setting up a time lapse with my small camera. But, I am doing it on top of my truck. I was starting to get around pretty well.

photo by Andy Leonard

photo by Andy Leonard

It rained 2” the night before; so to say the conditions were less than ideal would be an understatement. So, I’m walking around shooting hand-held with a 26-pound camera in the mud. You can’t slip and you can’t set it down. Sometimes, I have to stand on things to get a shot, like the wall I’m standing on to shoot this wall raising. Interviews are easier. Look at that left hand involvement.

photo by Andy Leonard

photo by Andy Leonard

photo by Andy Leonard

Here’s the 3rd new perspective shot.

photo by Deborah Thomas

In February of this year, I started going to SC to walk on the beach and talk with stroke professionals about my DVD idea. I took my bike on one of those trips and started riding again. Oh what a feeling! I found I could ride at pre-stroke levels, pretty much. I can’t tell you how good that made me feel. I rode for 2 & 1/2 hours the first day – up the beach and back, through the campgrounds, along a bike lane on the road, and down dirt roads and hiking trails to an old shell Indian Mound. A couple days later I rode 20 miles on the beach.

photo by Deborah Thomas

photo by Deborah Thomas

photo by Deborah Thomas

Putting the bike on top of the car proved harder than biking.

I knew I had made a good recovery. I didn’t know the level of my recovery until I started talking to stroke professionals about my Stroke Recovery DVD idea. One group told me they thought I had my stroke 3 years ago to be able to bike. That day in SC when I decided to jump on my bike, I’m glad I didn’t know that I shouldn’t be able to do it. Part of what I did was due to naiveté. They told me to go home, get out of the wheelchair, and relearn how to walk, so that’s what I did. It’s another case of you don’t know what you don’t know.

photo by Deborah Thomas

In March one’s thoughts turn to gardening. By now, I was able to operate the tractor. You need both hands and both feet. They have stiff clutches, no power steering, and you need both hands when you operate attachments and the PTO.

photo by Deborah Thomas

photo by Deborah Thomas

April 4th, was the anniversary of my stroke. Some people will tell you that anniversaries are difficult. When I got to a year, I decided to celebrate it. I went out taking calendar pictures on that beautiful April day. I also gave my counselor, PTs, and OTs a print of There’s Always Hope for the Future in thanks for their help in my recovery.

photo by Linda Mathias

In May of this year I competed in the Macon County Senior Games. As you recall, I had my stroke training for them the year before, so this was completing the circle for me. If I’d known I would be only about a minute behind the winner, I probably would have trained. I also might have ridden my road bike, not a mountain bike with knobby tires.

photo by Linda Mathias

But no one else in my age group showed up, so I won 3 gold medals and qualified for the NC Senior Games this September. I will do them to draw attention to stroke recovery and my DVD project, not to me.

photo by Linda Mathias

I’m also going to ride in the NC Stroke Association’s Cycle for Life event this October, again for publicity. I am going to be one of their letter writers, to raise money for them for stroke prevention.

photo by Deborah Thomas

I skipped over OT in keeping the chronology of walking. Being able to raise my shoulder and use my hand were both major issues for me. I had deficits, and I still do. I couldn’t keep my hand on the computer keyboard. My hand flopped off the shelf when I got the vitamins down. I decided the vitamin bottles were just the same as the plastic spindles at OT. So, I took the vitamins down and put them back over and over for 10 minutes or more every day.

When I complained about stiffness and lack of range of motion in my shoulder, an orthopedic surgeon told me I had adhesive capsulitis. This is a condition normally from non-use and I was doing PT & OT every day and could pull my OT across the room with the blue band! She’d hold on to the cabinets when we did the bands. They stopped me from pulling the band across and in front of me and the same motion only up in case I had a “pinch” in that shoulder. I was told that these two were the key to getting rid of the shake in my hand, so I was not real happy but I did what I was told. I wanted that shoulder back, so I went to a chiropractor, who is also an applied kinesthesiologist. She did wonders getting rid of the tension in my neck and helping me get a full range of motion in my shoulder. And, she worked with what my OT was doing and my OT was open to what she was doing. How could they not work together when they saw me make progress every week?

The chiropractor said something simple. I told her about my routines with bands and weights. She said, “They are all good, but if you can’t do something, why not practice that, too”?

photo by Deborah Thomas

I found driving, lawn mowing, and vacuuming to be good shoulder and arm therapy. Anything where you hold your arm still and have to steer. Yes, I vacuum left-handed.

photo by Deborah Thomas

photo by Deborah Thomas

Cooking is good therapy, too.

photo by Deborah Thomas

photo by Deborah Thomas

photo by Deborah Thomas

photo by Deborah Thomas

Everything is an opportunity for therapy. Don’t turn the bottle, turn the top and you’re doing OT! It’s not what you work with but that you put in your time working.

I’m writing an entry called Integration: Beyond Involvement on my blog, but then I’d need another hour to talk about that. And yes, I stand on one leg and balance when I pump gas.

No matter how many times it takes to do something. I never quit. I always complete the task. I believe in brain patterning – psychological as well as physiological, and that success builds on success. If I didn’t like how I did something or if my hand shook, I’d just do it again and again until I was happy and I felt my brain was patterned, at least for now. Hopefully the next time I’d start off closer to correct.

Sure I know what shirts will fit over my hands with the cuffs buttoned. I didn’t say I don’t believe in using your cognitive skills to make life easier, I just don' shy away from any task, rather I embrace them. That’s how I’m going to relearn and get better, through time and repetition. I have all the time in the world – at least I’m still here. Am I discouraged by what I can’t do? No, rather I am encouraged by what I can do.

Once you reach a certain level you have to work just to maintain that, let alone get ahead. Like the hand reaching up from the grave scene in horror movies, a stroke tries to reach up and recapture from you what you have gained. I need to preface this: I am not crazy. And, then there are the little voices; you don’t really need to walk today. It’s O.K. to not… So, the higher the level I achieve forces me to have to put in effort to maintain that level. It’s not fair, but that is the way it is.

I was an hour early to a covered-dish lunch for the Senior Games recently. I used the extra time to walk around the parking lot. A woman thought I was leaving and said, “Oh, you’re not going to stay for the lunch”. I said, “I’m not leaving, I’m just walking laps, trying to walk away a stroke”. She said, “Oh, a stroke, you need to keep moving then”. As I walked away, I thought nothing could be closer to the truth. I’ll keep on moving and fighting this until the day I die if I have to, and I’m fine with that.

OK enough recovery, here’s my idea.

When I left CarePartners I discovered a gap that exists for stroke patients who now have to manage their own recovery, rather than have it orchestrated for them, like I assume you do for your patients. It’s like the TV commercials with the Verizon guys. They are there for you in the hospital, and no longer covering your back when you are released. And there are no stroke doctors per se. People who have a heart attack have cardiologists. People with cancer, see oncologists. There are even doctors who specialize in all the various types of cancer, but not stroke. Once your brain is stable, you are done with your neurologist. I went to see mine a couple of times after I was released because he spent time with me and gave me answers. Normally, you see them a couple times in the hospital and once in the office after 3 months, and you are on your own and the answers are not all in one place.

I went to my family doctor, a blood pressure specialist, an internist, an orthopedic surgeon, my neurologist after I was released by him, PTs, OTs, a counselor, and a psychiatrist. I still don’t have the answers I would like to have. Somewhere they exist. That was the first thing that I thought of in terms of a Stroke Recovery DVD. Couldn’t many of the questions those engaged in stroke recovery have be answered by doctors and therapists and put in one place?

The second thing that occurred to me that seemed appropriate to a DVD, was I wanted my PT and OT in my living room on my TV to go over those new exercises we’d just learned. It’s hard to remember all the things you are supposed to do and how to do them. Often your family caregiver is not there to help you remember. And, I wanted to have someone to do it along with.

Attitude kept playing a larger and larger part in my thinking about this DVD, so it will be an important section and an underlying theme throughout. I decided to ask some famous people like Chuck Swindoll with the Attitude quote, Ram Dass who wrote Be Here Now and had a stroke and was the subject of Fierce Grace about his stroke, his buddy and neighbor Dr. Wayne Dyer, Dr. Jill Bolte Taylor, who had a stroke and wrote “My Stroke of Insight”, Lance Armstrong who knows a thing or two about recovery, and Dr. Phil. No, I didn’t ask Oprah. Ram Dass has agreed and so far I haven’t been told “No”.

It will also contain a Caregiver section. Family caregivers have no idea what they are in for. Whether it was a “minor” stroke or if major adaptations to life and the home are required, they need help.

The purpose of this DVD would be to bring together in one place as much of the information as possible that someone in stroke recovery needs for his or her total recovery.

So, I wrote up my proposal and headed out to talk to stroke professionals. I got an overwhelming response from the inpatient & outpatient rehab facilities and the stroke & neurology departments I spoke to. My first appointment was at LCCA in Charleston with Maggie Hypes.

I was 40 minutes early so I took off my sport coat, popped on my sneakers and walked the parking lot for 30 minutes. There’s Integration in action. Maggie referred me to Antoinette Meulke. I came here and spoke with her and Mike Reams and here I am today. I’m hoping to get funding for my project from a grant from the Centers for Disease Control that the Tri-State Stroke Association is going to write. I would be happy to discuss my idea, or anything else, with any of you. My final points are:

Success builds on success, so help your patients have lots of small victories.

Encourage them in everything they want to do.

Take the time to notice the beauty around you; in the people you come in contact with and in this marvelous world we live in.

Find the beauty.

Macon County Senior Games

2009-05-20T13:45:00.000-07:00

The start (photo Linda Mathias)

Crusing along (photo Linda Mathias)

The finish (photo Linda Mathias)

I had my stroke training for the 2008 Macon County Senior Games. So, when I got back on my bike in February 2009, I decided I would ride in them in May 2009. If I'd known I would be one minute behind the winner, I probably would have trained. I think I can go to the NC state finals in September where lots of people can beat me, none who have had a stroke though.

Thanks Linda for coming out with your camera!

Here is a link to the story The Franklin Press did.

http://www.thefranklinpress.com/articles/2009/05/15/living_in_macon/01living.tx

Here it is, also.

The Franklin Press
Living In Macon
Resident hopes to create needed resource for stroke victims
By Colin McCandless
pressreporter@thefranklinpress.com

A local resident is working to develop a video project that would empower stroke patients to take charge of their own recovery, while helping address a gap in the health care system.

A professional videographer and photographer with 30 years experience, Ralph Preston of Franklin is collaborating with the Tri-State Stroke Network in seeking a grant from the Centers for Disease Control and Prevention (CDC) to develop a DVD on the various aspects of stroke recovery.

Preston wants to bring attention to the issue of strokes and help make information more accessible to stroke victims and their caregivers.

He knows firsthand what it's like to experience one. Preston suffered a right-side hemorrhage stroke last April at age 58 while he was training on an exercise bike for the North Carolina Senior Games competition.
"My stroke was completely preventable," Preston said. He had marginally high blood pressure and chose not to take his blood pressure medicine, he recalls.

Preston spent 5 days at Mission Hospital in Asheville and then 17 days at CarePartners, a rehab hospital (also in Asheville).
Following his release from CarePartners, Preston discovered a gap in the health care system concerning strokes: it proved difficult finding critical information to facilitate his own recovery.

He found there are no "stroke doctors" in the area, that family doctors often do not have much knowledge about strokes and that the information a patient needs to medically manage their recovery is spread out over a large number of sources.
Upon seeing this problem and experiencing the frustration as a patient, Preston derived the idea of creating a DVD to try and address that gap. The project would allow him to utilize his video production skills to develop a user-friendly, accessible resource that will help others like him in their respective road to recovery.

According to Preston, the purpose of the DVD would be to compile in one place most of the information a stroke patient needs for their total recovery. All of the information would be menu-driven so the patient could watch just the sections that pertain to their individual needs.

The DVD would be designed to provide useful information to patients at any stage of recovery and would contain, among other things, outpatient facility information and therapeutic exercises to do at home. The program would be aimed at patients just released from a rehab hospital and could be given to them as they are discharged from the facility, according to Preston. Because recovery continues over the patient's lifetime, Preston said the program would be valuable at any stage of the process.

It will feature interviews with psychiatrists and psychologists, stroke patients and their success stories, doctors, rehab-center managers, etc.

There would be sections on therapies and modalities for the most common stroke issues, post-stroke medical information, physical therapy and stroke prevention. Additionally, there would be a section geared towards family caregivers on how to equip a home for stroke patients, along with information on blood pressure, cholesterol, clots, blood thinners, etc.
In addition to stroke professionals and stroke victim testimonials, Preston has gone after spiritual/motivational teachers that he intends to interview for the video, including Ram Dass (accepted), author of "Be Here Now" and Dr. Wayne Dyer.
He also plans to ask seven-time Tour de France cycling champion and cancer survivor Lance Armstrong to appear in the video.

Preston emphasizes that the video would exude a positive tone and stress the importance of maintaining a good attitude during the recovery process.

Preston hopes he can get the CDC grant money for the stroke recovery video this year and put together the DVD by May 2010. (May is "Stroke Awareness" Month). If the CDC funding falls through, he will seek other funding sources (foundations, etc.).

His wish is that the video can serve as an inspiration to others. "It's not about me," Preston said.

He has shopped the DVD concept with stroke professionals in the state and region who have been supportive of the idea, including the executive director of the Tri-State Stroke Network (who are funded by the CDC), and the North Carolina Stroke Association.

Preston explained that he also learned during his research for the DVD that the tri-state area of South Carolina, Georgia and North Carolina is part of the "Stroke Belt," usually defined as an 8-12 state region (typically including Alabama, Arkansas, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, and Tennessee), according to the Stroke Network's website www.tristatestrokenetwork.org/facts.html.

It so named because the region typically features higher death rates from stroke than the rest of the country.
Within the stroke belt, the highest stroke death rates are clustered in the coastal plains regions of Georgia, North Carolina, and South Carolina; this region has been called the "Stroke Buckle." The stroke death rate in the Stroke Buckle is two times greater than that in the rest of the nation, according to the Stroke Network.

This has become an added focus for Preston's DVD since North Carolina shares in this dubious distinction.
In April, Preston also started a blog at strokedvd.blogspot.com that describes his own recovery experience and the plan to produce a stroke recovery informational DVD.

Preston said he hopes the website will eventually feature some type of stroke resource section either with a question and answer page, an interactive place where people can pose inquiries to stroke professionals and get feedback or a link to stroke information.

Preston's Road to Recovery

Since suffering his stroke last year, Preston has relearned to use his cameras again, including his 26-pound broadcast camera, which as a professional photographer is most important to him.

Along his road to recovery, Preston did walking exercises daily, and it took him a couple months before he could build up to walking two miles.

Three months into his recovery though, he was able to walk three miles out and three miles back on the Appalachian Trail to the top of a mountain with 1,500 feet of elevation gain. He has also walked seven miles on the beach.
Ten months following his stroke, Preston was also back riding his bike again.

Preston recently rode his mountain bike 22 miles on the beach in less than two hours and rode a 20-mile bike trail in an hour and 15 minutes.

He walks or bikes every day in addition to doing his daily occupational therapy exercises.

Additionally, Preston intends to ride in and be a letter writer to raise money in the NC Stroke Association's annual fundraising "Cycle for Life" bike ride event this October.

The NC Stroke Association is also featuring him in the June issue of Update Stroke. Preston has been asked to be a motivational speaker at Life Care Centers of America's annual meeting in June.

On May 7, thirteen months removed from his stroke, Preston completed a 10-K bike race in the very same Senior Games competition for which he was training when he had his stroke.

"It was kind of like completing the circle for me," Preston said.

My Recovery

2009-05-05T10:17:00.001-07:00

I had a right-side hemorrhagic stroke on April 4, 2008. I spent 5 days at Mission Hospital in Asheville, NC and then 17 days at CarePartners, a rehab hospital also in Asheville. I have made quite the recovery. I am a photographer and videographer and have relearned to use my cameras, which is most important to me, including my 26-pound broadcast camera. I have walked 7 miles on the beach. I have walked 3 miles out and 3 miles back on the Appalachian Trail to the top of a mountain with 1500 feet of elevation gain. I got back on my bike. Recently, I rode my mountain bike 22 miles on the beach in less than 2 hours and rode a 20-mile bike trail in an hour and 15 minutes. I walk or bike every day as well as doing my OT exercises every day. I am enterd in the NC Senior Games, which I was training for when I had my stroke. I am going to ride in and be a letter writer to raise money in NC Stroke Associations “Cycle for Life” bike ride this October. They are also featuring me in the June issue of Update stroke. I have also been asked to be a motivational speaker at Life Care Centers of America’s annual meeting in June.

I live by this attitude quote. It saved my life and allowed me to make the recovery I did. I am in the process of making a poster with this quote and a "magic moment" shot between a patient and therapist at CarePartners. "Transferring Knowledge, Power, and Love" is what I made up to describe the magic moment I am looking for. I think it should hang in every rehab facility in the country in the staging area where everyone will see it.

Attitude

“The longer I live, the more I realize the impact of attitude on life. Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness, or skill. It will make or break a company…a church…a home. The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past…we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is to play on the one string we have and that is our attitude…I am convinced that life is 10 percent what happens to me and 90 percent how I react to it. An so it is with you…we are in charge of our Attitudes!”

Charles Swindoll

I have developed methods for integrating PT & OT into normal life. For OT I do everything with my left hand. I dubbed it, "The Affected Hand Olympics". For PT, I balance on my affected leg when standing in lines. I look at the horizon, close my eyes, or look left or right while walking on the beach to improve balance, etc. Of course, this is in addition to walking or biking every day and doing my OT exercises every day. I believe you are either going forward or you are going backwards. See the post called "Integration: Beyond Involvement" for more on this.

Me & Kathy (my PT) walking out of CarePartners
photo by Deborah Thomas

Standing on a 2 x 4 with my 26-lb. Betacam at a Habitat build
photo by Andy Leonard

Doing an interview in the mud at a Habitat build
photo by Andy Leonard

The pictures here are all post stroke. I am told I am the one of the few in recent memory that walked out of Care Partners. In the first Habitat picture, I am standing on a 2" x 4" with my 26-lb. Betacam. Look at that left-hand involvement in the Habitat interview shot. The Habitat pictures were taken 5 months after I left Care Partners.

There is Always Hope for the Future
(Great Spangled Fritillary at the Cowee Mound)

My therapist asked me one day if I had hope for the future. I replied, "That's a silly question, there is always hope for the future." She said not everyone felt that way. Two days later when I was at the Cowee Mound (an ancient Cherokee site and my favorite place on earth) taking this picture of a Great Spangled Fritillary, it made me think about hope for the future. So. I named the picture "There is Always Hope for the Future" and made her a print. This was at about 7 weeks on my own, when I was getting better at getting up from kneeling, like I did to take this picture.

Integration: Beyond Involvement

2009-05-01T10:46:00.000-07:00

When I was at Care Partners rehab hospital in Asheville, NC, they preached "involvement" with your affected hand. Not an easy thing if you can't pick up anything or use your arm. First, I had to build up the strength and the coordination in my hand to be able to hold anything. I did this by squeezing putty and stretching rubber bands, the ones that come with the mail. I kept some of each in the car, so as my wife drove me to doctors appointments I could work my hand. I did a lot of wrist-stregthening exercises, too. I kept a hammer with me when I was sitting on the porch or riding in the car.

I also had to build up my shoulder to where I had some range of motion and some strength. I did that by holding a light weight by my side and drawing circles with it, both clockwise and counterclockwise. I also got a wooden dowel at the hardware store and used my unaffected hand to raise my affected hand over my head.

Eventually, I could raise it on my own and I could keep my hand on the computer keyboard. I wanted to be able to drive a car again. I had had a field of vision test at my eye doctors before the stroke, so I had one after. I lost very little, so I headed out with my wife as the driving instuctor. I passed, That was a big day. I started driving with my left arm. I found things like driving, lawn mowing, and vacuuming where you are holding something steady and steering to be beneficial. In the begining, my arm would sway for no reason, so I was careful every time I met a car if I was driving. Eventually that went away. You can't do too much damage with a vacuum cleaner. Yes, I vacuum left handed. I always will. Mowing was good in the early days after I learned to walk well enough to take it on. It involves pushing and I live in the mountains where there are always hills. I found it good for building up stamina. I had to push myself continually to rebuild my stamina. In the begining simple tasks and anything that used my brain drained me. Eventually, I could ride my bike for a couple hours without stopping. Next, I want to learn how to run again.

Once I got some function back, I could start to think about involvement. So, I got down the vitamins with my left hand and arm. I had trouble doing it, so I'd get them all down and then put them back. Get them down and put them back.

Every time I have trouble doing something I do it over and over again until I was satisfied I am doing it right once. So, if my hand shook when I was going to pick up something and I didn't like it, I repeated the motion until I was happy and picked it up.

Once I achieved involvement, I tried to figure out ways to use my affected side in everyday tasks - integration. I got tired of how long it took me every day to do all the exercises I was doing at the time. When you integrate it's like free PT or OT time. It doesn't come out of your time like pulling on a rubber band does. If you balance on your affected leg while your gas is pumping, you are doing PT and the time does not come out of your life, it's extra therapy time.

I walked and walked and walked some more. I walked on my toes I walked on my heels. I hopped in place. I hopped from side to side. I hopped laps. I high-stepped laps. I did ankle dips and raises on a step. I practiced going up and down steps. I walked on every kind of surface and terain.

How could someone is a good a shape as I was get his stamina wiped out? SImple answer, stroke. I believed in pushing myself a little every day. Steady pushing yields steady progress and soon I was able to do some things that meant a lot to me. Walking to the jetty and back at Hunginton Beach State Park was my first big accomplishment. When I got there I thought, "Can I make it back?" I had been so sigle-minded about making it to the jetty, I forgot I'd have to walk back. But I made it, and that was just another step and another confirmation that if I set my mind to it, I could do it. I could recover.

Here Is My Idea

2009-04-30T10:21:00.000-07:00

Proposal for Stroke Recovery DVD

I am a professional videographer and producer with 30 years experience who is developing a DVD on the various aspects of stroke recovery because this information is not easily available to the people who need it most: stroke survivors and their caregivers. I know this to be true because I am a stroke survivor myself and it has been difficult to find critical information to facilitate my own recovery. It would be a significant boon to stroke patients and to the stroke community to have most of the information needed in one convenient location that could be accessed easily, at home. Because a DVD enables the user to navigate to the specific information they need, the user could watch only the material they wanted.

The idea for this stroke DVD was born out of need and frustration. On April 4, 2008, I had a right-side hemorrhagic stroke. After 5 days at Mission Hospital in Asheville, NC, I was released to CarePartners, a rehab hospital also in Asheville. After 17 days there, they determined I was able to go home. When they discharged me, I was left without a source of information about stroke in general, my condition in particular, and my recovery therapies. I did attend 30 physical and occupational therapy outpatient sessions (all my insurance would pay for) and followed the instructions I was given so that I could continue the exercises at home. Every day, I wished my therapists were there to go over the recovery routines with me. While I made lists to remember what exercises I needed to do, what I really wanted was to watch them on TV and follow along. Another source of frustration was that I was released to the care of my family doctor and quickly discovered that there are no “stroke doctors” and that the information a patient needs to medically manage their recovery is spread out over a large number of sources.

The purpose of this DVD would be to bring together in one place most of the information a stroke survivor needs for their total recovery. All of the information would be menu-driven so the patient could watch just the sections that pertain to their individual needs. The DVD would be designed to provide useful information to patients at any stage of recovery and would contain, among other things, outpatient facility information and therapeutic exercises to do at home. The exercises should be used often so they would be easy to get to from the main menu. The program would be aimed at patients just released from a rehab hospital and could be handed out to them as they are discharged from the facility. But, because recovery continues over the patient’s lifetime, the program would be valuable at any stage of the process.

As anyone who has dealt with stroke can tell you, a positive attitude is critical to recovery. The entire DVD would have an overtone of how important it is to maintain a good attitude. It would also stress that each recovery is different and that your recovery is governed by the principle that you will get out of it what you put into it. The program would feature interviews with psychologists and psychiatrists on attitude, grieving, moving on, and being the best new you that you can be. It would also interview stroke survivors who have great success stories and show them involved in normal or surprising activities. It would then explore how they achieved their successes and how much attitude and perseverance had to do with it.

There will also be sections dealing with post-stroke medical information; interviews with various doctors on bleeding strokes and clotting strokes (these would be two different DVD menu choices); and information on blood pressure, cholesterol, clots, blood thinners, etc.

I would also include a section on therapies and modalities for most of the common stroke issues. There are many new technologies out there to make patients aware of like VitalStim, AutoAmbulator, It's Never Too Late, and SaeboFlex to mention just a few.

In the physical-therapy section, several therapists would address the numerous questions that stroke patients have about their recovery. The exercises could be demonstrated so that the patient would see the correct way to perform them. There could also be a separate section, facilitated by physical therapists, on three or four levels of exercises the patient can do at home to strengthen their affected side and improve balance. It will include demonstrations and tips on how to walk better, including heel-walking, toe-walking, high-stepping, and hopping, because at home it is hard to remember everything you did at PT. The program would also stress how important it is for the survivor to continue to do the exercises on their own, and would include tips on how to integrate PT into the patient’s day-to-day activities. Similar sections would address occupational therapy, as well as arm and shoulder therapy, following the same format as the physical therapy section. Both of these sections would include exercises demonstrated by OTs. All of this is aimed at helping the patient overcome deficits.

The DVD could also interview rehab-center managers on their facility’s particular stroke-recovery philosophy and feature a brief tour of the facility. It would also include information on how to prevent another stroke, such as by losing weight, managing blood pressure, decreasing risky behaviors, eating healthily, being active, and staying involved with other people.

There would also be a section for family caregivers dealing with how to equip a home to optimize it for stroke patients, such as using shower chairs, wheelchairs, and other adaptive equipment, in addition to addressing the challenges of day-to-day life with a stroke patient.

In short, this DVD would bring together much of the information currently known regarding strokes and present it in an easy-to-use format that would empower the stroke patient to take charge of their own recovery, thus facilitating a more successful outcome. I hope that you will be excited by this proposed DVD and will want to work with me to bring it to fruition. I have the involvement of the National Stroke Association and their Stroke Rehabilitation and Recovery Network (SRN) and they are going to provide me with some guidance. Their website will be an important research tool. If it meets their guidelines, they will promote it on their website and through their newsletters. A portion of the proceeds will be dedicated to stroke prevention and recovery.

Me Blogging!!!

2009-04-30T06:39:00.000-07:00

Me blogging, imagine that! I don't text with my cell phone, or have a Blackberry, do MySpace or Twitter. My cell phone accompanies me when I work, or hike, or ride my bike, but I'm low-tech whenever I can be.

I started this blog to keep everyone informed about my idea for a Stroke Recovery DVD and as a easy way for people to share comments and suggestions, which I am more than open to. If you would like to discuss this idea, rather than blog, call me at 843.947.0010.