Tuesday, May 25, 2010

In for the Long Haul


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

7 comments:

  1. Ralph, This is so very good. Do you realize the things you are doing apply to other problems with brain function disorders? Keep up the good work we are cheering for you and need your encouragement as well! Janice Fouts from my Facebook page

    ReplyDelete
  2. Ralph: Fantastic! Your story is inspiring to me and you MUST keep working on the Stroke DVD concept. Harvey Fouts from my Facebook page

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  3. I took advantage of the links on your contact info and read your blog about your stroke. It was really helpful for me in understanding what happens when someone has a stroke. My grandpa had several strokes and passed away 2 years ago as a result so ive seen what it can do and its really inspiring to see and read how you delt with it.
    I just wanted to let you know it was really great to read and the pictures are beautiful. Tabitha McCall from email

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  4. By the way, it is truly inspiring to read about everything you've overcome! Ann Bomgren from email

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  5. Dear Ralph,

    I just finished reading your speech about your stroke recovery and DVD project. I must tell you that how you describe your experience, it could be me. I had a right-side ischemic stroke that has affected the entire left side of my body, and then some. I read your story and laughed, cried, and cheered and finally realized that I’m not alone in my new life. You have helped me put what I feel into words. Thank you.

    My stroke occurred on April 8, 2010. I am walking unassisted now, doing stairs, cooking, mowing, gardening, and continuing PT/OT. I hope to be driving soon. I fully agree with you on the subject of positive attitude, and believe a supportive and informative DVD would be a wonderful tool to help recovery. I would like to be of help in some way, in spite of my humble talents.

    Thank you once again for your support of my and other recovery efforts. I, for one, feel that your DVD is an idea who’s time has come. Good luck with all of your efforts. God bless you and your recovery. This all has been a breath of fresh air.

    Thanks and good luck,
    Wes Roberts
    from email

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  6. I recently came across your blog & post about your recovery and DVD. I found it both impressive and inspiring and wish you the best in your pursuit of this very worthwhile project. I too am an avid photographer who had a stroke about 7 months ago as a complication of brain surgery at the age of 32, leaving my left side affected. With a lot of therapy work I'm able to walk unassisted, aside from an AFO, and handle stairs without using the rail.

    I am now trying to focus on improving the range of motion in my left arm & shoulder so i can use my camera (and do other things too). In my affected hand i have some gross grasp but cannot yet extend my fingers. If you have any tips on exercises that helped you regain finger extension I would greatly appreciate any you could provide.

    Thank you again for sharing your motivating story and efforts.
    Ben
    from email

    I did write him several times and provided him as much help as I could and I would be happy to ddo the same for anyone in stroke recovery and their caregivers.
    Ralph

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  7. To raise money: Contact the many post-stroke rehab centers & national organizations. Make the poposal as detailed as possible. Pitch them on how much time it would save them in educating post-stroke patients & their families -- in the emergency room, ICU, general floor room & rehab. It could save doctor, nurse, social worker & case worker time. Basically, sell them & then give them a delivery date & take advance orders based on so much per order -- or on a monthly internet access subscription plan. Use their orders to secure funding from a bank or investors.

    My husband had a stroke Dec 23, 2011 (19 days ago). The hospital gave me virtually no information at all -- except for a paper about the warning signs of an on-coming stroke! I was completely unprepared & terrified. No one had any meaningful info to give me. The nurses & doctors seemed irritated by my questions. It was awful. I got almost all my info off the public hospital computers. Even now I really don't know exactly what's going on. I'm so exhausted I'm just living day to day. I'm furious with my stubborn husband for rejecting all my many pleadings to go to the doctor -- and for refusing to improve his health before he had a stroke. He wouldn't before when all he had to do was control his appetite, take his meds regularly & go for regular check ups. Now he can't even feed himslef oe stay awake during therapy. My husband is 68. It looks like he's headed for a nursing home for the rest of his life, requiring 100% assistance for all his needs. He's not in a coma. He knows what's going on (sort of -- he still thinks he's coming home!). He can communicate, but his speech is garbled & hard to understand. He is now living a Twilight Zone nightmare: An intelligent, fiercely independent, private man trapped in a body that won't function, requiring assitance from strangers for the simplest things. He can't even manage to use the call button in his hospital bed.

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