Stroke Connection Magazine January/February 2007 Supplemental Letters

Updated:Mar 21,2012

Letters may be edited for length and scientific integrity. The opinions presented are those of the individual and do not reflect those of the American Stroke Association.

The information contained in the following Letters To The Editor is provided by the American Stroke Association as a resource. The Services or products listed are not owned or provided by the American Stroke Association. Additionally, the product or services have not been evaluated and their listing should not be construed as a recommendation or endorsement of these products or services.

Jump to letters regarding:

Public Restrooms  |  Botox Injections  |  Shoes for Drop Foot

In response to Robert Sawyer’s letter in July/August 06 Stroke Connection Magazine re: public restrooms

I am my husband’s caregiver. Philip is a three-year stroke survivor. Usually our bathroom program away from home is to find a CVS or Walgreens drugstore. We have found they are wheelchair accessible and rather uniform throughout our state. We usually use the Mens room, knocking and announcing ourselves first.

Surprisingly we have found a zoo to have easier access than some churches and a teaching hospital to have had a handicapped restroom that we couldn’t even turn around in, let alone use.

Don’t let any of that stop you from going out. Folks have been gracious.

Rebecca Boliek, Caregiver
Ocala, FL


I have experienced a similar problem as a caregiver for my wife over the past 18 months.

I discovered that I have to locate handicap bathrooms in the entire town so that we are not relegated only to certain areas. In my search I discovered that the discount pharmacies have handicap restrooms that are clean and not often used by the general public. In addition, most have lock options on their doors. In our area there are many such facilities available, which gives us much flexibility over our entire town as well as adjoining towns. We have not attempted lengthy travels yet, but we are fortunate here in Florida to have excellent travel rest stops throughout the state on all interstates and major highways. Many have family restroom facilities.

Hope this is of assistance!

Charles Folse, Caregiver
Tavares, FL


I read the letter sent to you from Robert Sawyer, caregiver of Holland, OH. I can understand how he feels because I have a grandson who is autistic and needs assistance in the bathroom. It has been a nightmare because most places only have Men or Women bathrooms. The only stores that I know that have family bathrooms are WalMart Stores. A lot of people complain about WalMart because they say they are non-union. However, they have a family bathroom and have a very friendly & helpful staff. Every large store or restaurant should have Family Bathrooms. I feel society in the United States doesn’t care very much for the disabled in many ways and this example is one of them.

Anonymous


I lived in Las Vegas and went into quite a few casinos, my son being the caregiver, me the mom. Most restrooms had a sign stating opposite sex caregivers might be present. One casino told my son to leave though. I called the Justice Department regarding the American Disabilities Act because we were getting ready for a road trip. The law says reasonable accommodations, meaning clearing the restroom so you can go in. You can complain if you think you are being treated unfairly. I was very embarrassed at the one casino but I didn’t file a complaint. There are a lot of family restrooms at fast food places, but not at rest stops. I would always announce “Male caregiver coming in” which is reasonable and allows those that object time to leave. Never a problem when we did that.

We have a long way to go regarding disabled access in some businesses. Just keep pushing it with courtesy.

Terrie Dickerson, Stroke Survivor
Roanoke, VA


I am a three- year stroke survivor. My wife and I did a lot of traveling before my stroke. We traveled across the country and realized that McDonalds, Burger King and Wendy’s all have large single person bathrooms that lock from the inside. Plenty large enough for a wheel chair. This should help Mr.and Mrs. Sawyer from
Holland, OH and make their travels more enjoyable.

William Guimond, Stroke Survivor
Nashua, NH


In response to Jan Neels’ letter in the July/August 2006 Stroke Connection Magazine re: botox

Like Jan my stroke occurred June 1, 2004 and paralyzed my entire left side.  I too had lead a very healthy life, exercised regularly and had good eating habits. The big difference is our age. I was 80 at the time of my stroke. My HMO, Kaiser Permanente, stabilized me for a week and then put me into a rehabilitation center. I showed such good progress they kept me for an extra week.

After leaving the rehabilitation center I started my program at home with regular visits to the physical therapist. My progress was steady and gratifying; by the end of the year I was walking with a cane and able to get myself up and down on a workout mat. Unfortunately, in retrospect, my therapist suggested I obtain the services of a physiatrist.

Early in 2005 the physiatrist injected Botox in my left forearm with no effect. He then suggested Baclofen, which I agreed to. I feel this was disastrous for me and wasted a whole year: one of the side effects of Baclofen is that it acts as a sedative. It wasn’t until August 2005 that I realized I was going downhill. Under the physiatrist direction, I gradually withdrew from Baclofen.

I am once again progressing, step-by-step; some days are better than others, but they are all difficult. I’m now walking distances with a cane and gradually getting some use of my arm. I have used braces on my arm, wrist and hand to help prevent clutching. One of my therapists specializes in arms and hands, and he has me using range of motion exercises and weight-bearing to avoid the problems normal for a stroke survivor.

Since death waits for all of us in the future, I feel it is better to aggressively go forward, rather than waiting for the ultimate to happen. Naturally, I’d rather be the person I was prior to June 1, 2004, but I’m not. Where I am is better than the alternative. I’m happy and grateful that I am here with my wonderful, cheerful wife.

Blayne Asher, Survivor
San Francisco, CA


I am currently getting Botox injections, and the stiffness in my left arm and hand has changed considerably. I had a severe stroke that left me with little or no feeling in my whole left side, including my arm and hand. With physical and occupational therapy, I now walk with a cane. I am also able to go shopping, fix my own meals, do my laundry and various other activities. The only thing I don’t do is step into the shower (it is too large for me). I still have a tub that I just slide into and wash by myself. Maybe by December 6, 2006, I will be able to step into the shower alone.

I was a member of the North Shore Stroke Club in Manhasset, Long Island, which helped me considerably. My neurologist told me he wanted me to see one of his associates, who is also a neurologist. After being evaluated, he decided to give me the Botox injections. I was seen in March of this year. He said I would see a major change in about three weeks. Once I started the injections, I saw a vast improvement! The mobility in my arm, hand, foot and toes has improved remarkably. I get the injections every twelve weeks. I depend on God’s help – He will see me through as He has seen me this far!!

It’s wonderful, good luck!

Betty A. Walker, Survivor
Queens Village, NY

PS: Please note that the injections are very painful when injected into the muscles.


My husband had a stroke nine years ago. He was affected on the left side and is unable to lower his arm, and his fingers and toes draw up from spasms. When this happens, it’s very painful to walk or touch his toes and fingers. He has been taking Botox injections for about five years, every three months they use five vials throughout his left side. They say it takes up to two weeks to see results, but my husband can tell the difference within three days in his fingers and a week in his toes. The bigger muscles take longer. We suggest you use a neurologist, we seem to get better results from them than an MD, and it helps to last three months with a little exercise. This truly is a godsend. Please give it a try.

Linda Adkins, Caregiver
Via email


We love this magazine. My husband had a stroke four years ago, and I take care of him by myself. His left side is affected and he can hardly get around even with a walker. He has been on Botox, and I would like to reply to Jan Neels’ article, we have had such good luck with the product.

Lena Mesplay, Caregiver
Rolla, MO


I suffered a severe stroke in June, 2001. I also suffer from paralysis on the left side. Since 2002, I’ve been receiving Botox injections in both my arm and leg every three months. The injections relax the muscle spasms. Every day I wear a hand splint and a leg brace. By all means, receive this treatment. I also take a muscle relaxer orally, which is called Baclofen – 10mg three times daily. Please talk to your doctor about the Botox treatments. You’ll be glad you did.

Marge Utterback, Survivor
Pittsburgh, PA


I had a severe stroke in January 2004. It affected my left side. Fortunately, when I was in the hospital I was cared for by a knowledgeable and caring neurologist. About six months after my stroke I requested to see him again. He suggested that Botox would be helpful for me as I was getting severe spasticity in my hand. There is a neurologist in their neurology group that specializes in Botox injections. The injections have helped relieve the curling of my fingers. The effects of the Botox wears off in about three months. For this reason, I see this neurologist every quarter. I hope this has been helpful for you. I hope you take the suggestion of your PT.

Alyson Pearce, Survivor
Carlsbad, CA


I had a brain hemorrhage in September 2005, in my basal ganglia. My left side was paralyzed. I was 51 at the time. I was in rehab for a month and got home therapy also. I broke my ankle on New Year’s Eve and was sent to an orthopedic doctor. It was quite a task to get my foot to uncurl for a cast. I went back twice for casting. He said they shouldn’t have let this happen to me and sent me to a physical medicine office in Las Vegas.

The doctor there suggested Botox, but I was concerned about getting poison injected into my leg and arm. Both were curled with white knuckles. I finally got my cast off my leg and went back. The fist kept clenching more. The doctor used a needle with a wire and sensor pads to hit the muscle that was firing. It was no picnic getting the injections. He wouldn’t let me take a pain pill before either. But the next day I could see my fingers more relaxed and my toes not curled as much. Within two weeks I was in better shape with all the stretching and an AFO to keep my foot straight. Then I moved to Virginia.

Botox is only good for three to four months. So in May I went to the Physical Medicine Dept. at University of Virginia and got some more Botox in my leg and shoulder and arm. They used 500 units, in Las Vegas I got 400 units. I was allowed to take a pain pill, and it made the injections a lot more comfortable as well as the two-hour ride home. A lot more stretching and new braces, and I’ll probably need one more round of Botox.

I saw my granddad with the curled fist for 20 years, and I’ll bet he would’ve taken Botox. I feel better, and my hand is relaxed as well.

I would do it over and over regardless of the discomfort, the benefits are worth it. Surgery to cut muscles would have been next.

Terrie Dickerson, Survivor
Roanoke, VA


I’m a 52-year-old stroke survivor; my stroke was in August 2000. I have had numerous Botox injections since then, mostly in my leg, approximately six to 10 injections each time. For me it seemed to work a “little bit” for a “little while” making the muscle slightly looser. The injections hurt a bit, make sure they put numbing cream on first. My thought would be you should go for it. It may or may not be right for you. They usually do them again after three months. The last time I saw my doctor I told him I didn’t notice any difference after the last series. He said I may be becoming immune to the Botox. I am going to see another doctor this week. Anyway, they make slight to no improvement for me, but I keep going and hoping that “this time will be the one.”

Best of luck to you in your ongoing recovery, God bless.

Kathy, Survivor
Via email


My husband Johnny had a severe stroke three years ago, which left him with limited use of his right leg, his right arm is totally useless, he is basically speechless, cannot write, and does not remember his ABC’s.

Many times I’ve thought of stopping delivery of Stroke Connection because all the stories and letters seemed to contain magical recoveries. Then the August issue finally had realistic letters. A. Culbertson is right on about money making a difference. I’m sure there are many people that just can’t afford the treatments that would really help. I also believe where you live makes a big difference. We live in a small rural community with no close rehabs; as my husband is 58 and I’m 56, someone has to work for insurance as Medicare is not accepted by many doctors. Johnny also has seizures. I leave him alone a lot, which is scary but caregivers are expensive, and adult day care is 30 miles away. I think your magazine should concentrate more on the reality of most stroke survivors. If you have no computer, calling for information is hard as most places are closed when I get home from work.

Jan Neels should really investigate before having Botox. It did not help my husband and cost $4,000.00 a shot.

If anyone can tell me where to get an ankle brace that doesn’t encompass his whole foot with plastic, I would love to know about it.

Maxine Bryant, Caregiver
Huntsville, AR


My right side is like Jan Neels’ left. To help, I lie on my left side with my right hand under my head, relax and go to sleep. The weight of the head over time relaxed my hand, and now I am ready to work on control. Just an idea.

D. Olafsen, Survivor
Via email

 

In response to Nancy Phillips in July/August 2006 Stroke Connection Magazine re: drop foot

I too had a severe stroke. I was 46, diabetic and on dialysis (diabetic since I was 24 and on dialysis for eight years). For Nancy Phillips, the Indians use moccasins that had no rubber, just a smooth bottom. You should find them anywhere.

D. Olafsen, Survivor
Via email


Nancy Phillips should try Dexter or Eastland shoes. They are made in the USAand usually have leather soles.

Maxine Bryant, Caregiver
Huntsville, AR


I had the same problem of picking up my foot and dragging the left toe of my shoe. A therapist showed me a shoe that had been modified by putting a leather section on the toe of the shoe. This solved my problem, and I no longer dragged my toe. My local shoe cobbler modified my shoe and inserted the leather sole at the toe. Other survivors with the same problem have tried this and found it very satisfactory.

Robert Lane, Survivor
Atlanta, GA


I will be 77 years old in August. I had a stroke in July, 1998. As a result, my left leg is weak and my left foot draggy. I occasionally stumble because my foot is not always told by my brain to move when I do. This has caused me to break my right shoulder, and another time I broke my left hip. Hip and shoulder are all healed and with no repercussions. However, I do try to be fully aware that it could happen at anytime and I am cautious. I find I cannot wear the rubber-soled sports-type shoes; however, I can wear quite comfortably the type of shoes they wear on tennis courts, even though they also have rubber soles. Slick soled shoes don’t help and present a danger of falling or losing my balance. In the winter I wear penny loafers. They don’t do much for “dressing up,” but at my age I go for comfort, and most always use my cane for balance.

I had another problem: whenever I would walk, with my left leg being “out of sync” with my right, it caused “up-and-down” friction at my spine where it connected. That caused me pain and I felt it might damage the bone in that area. My orthopedic doctor suggested foam heel pads in my left shoe to help lift my left foot. That did help some but not enough; so on top of the pads I put into my left shoe a very hard arch support. It not only raised my left side to correspond with my right it stopped the pain. I don’t know if your back hurts, but if it does, it might not be arthritis, it could be you just need to be “in sync.” I hope this gives some helpful feedback to you. God Bless, and be sure and use what you have left, it will make you stronger.

Remember, yesterday is history, don’t dwell on it because you can’t change it. Tomorrow is a mystery, we can’t know what will happen; but today is a gift from God, that’s why we call it “the present,” so I concentrate on being the best I can be.

Betty Bleier, Survivor
Belton, MO


In your last issue, a woman wrote in and asked if others had similar problem with foot dragging. I had a stroke 12 years ago and had to put up with all kinds of things, but now I can get around pretty well except for my toes bending over and causing much pain. Anyway, I wanted to tell both of you what I recently discovered and that is WALKAIDE SYSTEM, Innovative Neurotronics, 2 Bethesda Metro Center, Suite 1200, Bethesda, MD 20814. It really works for someone with drop-foot.

Eileen Basile, Survivor