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Fifteen Years and Counting

By Lin Wisman

 

 

I stroked March 6, 1997 – 15 years ago. Stroke can dramatically change your life. Recovery takes time and perseverance.

 

When you have a stroke no one tells you that you may have to live with residuals for a really long time. Many go into denial and figure they will be “back to normal” soon. For many of us that just is not going to happen. I have over the years likened having a stroke to other life altering events. Most people have them and most find ways to deal with the event and go on from there.

 

I was 46 at the time of my stroke. It was a brainstem cerebral hemorrhage, with no known cause. I was healthy and still considered myself a young woman. I became an elder overnight. At one point early on my family was told that I would die. I was given last rites. Family members flew into town to say goodbye. I spent four months and three weeks in three different hospitals.

 

And here I am 15 years later, very much alive. There are many things I have had to give up. There are many changes I have made. My experience is I did not have a choice. The stroke was a given and I felt compelled to adjust, to make the best of a situation I would not have chosen.

 

I have learned a lot. Most of it has been learning by trial and error. This year for my anniversary I am sharing some of my learnings.

 

Medical Establishment

Don’t believe everything your doctors and therapists tell you. They are usually pessimistic. If you live in the US, they are not allowed by insurance companies to provide never ending services. Remember insurance companies’ primary purpose is to make money. Don’t expect as much as you think you need.

 

I was told after a year that I would not improve anymore and therefore would not be provided any additional medical services. I intuitively knew that I was not finished healing. I have improved 500% since then.

 

 

Rehabilitation

Rehabilitation has been the main route to recovery for years. There is no “cure” for stroke. Recovery is often not 100%. Outcomes depend on hard work. Remember to ask questions and do all of your homework.

 

Family members can be very important. They need to talk with medical personnel and advocate for the best quality and most quantity rehabilitation possible. They also need to ask how they can help.

 

Alternative Medicine

Seek alternatives and buy what your budget allows. Some examples are Acupuncture which improves your overall health, Botox which can temporarily loosen your muscles so exercise is possible, and Tai Chi which can help your balance.

 

Remember there is no silver bullet, but may alternatives do help.

 

 

Healing Time

There is no time limit on healing. It is true that the first year usually sees the most improvement. But, I have talked to survivors who still see improvements 20 years later.

 

General Health

Take this opportunity to reassess your overall health. Take meds if needed. (Be sure they really are needed.) Take vitamins, loss (or gain) weight as appropriate. Reassess your diet.

 

Exercise

Find ways to exercise. This is often difficult with limited mobility. It is important to overall health. Early on I went for a walk each day. At first I added steps. Eventually I added distance. Now, I walk an hour outside most days, weather permitting.

 

We had a stationary bike that was a dust collector. I asked my therapist to help because initially I could not figure out how to get on. Now I ride it most days for 20 minutes. I find that exercise not only improves my body physically, but it helps my mood. Other options I have found helpful are water aerobics (check your local park district for classes designed to help arthritis) and yoga.

 

Disability Appliances

One important thing I have learned is to find implements, which help you get things done. I will list some examples. Find what works for you.

 

A shower chair and hand held shower head are essential. They may make taking a shower possible. The first shower chair I owned was covered by insurance. I am now on my third shower chair. Each has been selected to deal with my current physical needs. It is also important in the shower to be able to easily reach everything needed.

 

I discovered early on that I could not carry stuff and walk with canes at the same time. I tried a back pack. That worked for some things, but was a pain. And, if you wanted to make a cup of tea, you could not carry it. I discovered rollators. What a great tool. I have a tray on mind, which lets me easily move things like full cups. Rollators are also much more stable than canes or walkers. These days they are very common. And they have improved and come down in price over the years.

 

When I needed a different car a few years ago, I took my rollator along to be sure that I could put it in and out myself, so I could be more independent. I only drive locally since the stroke. But, I can get myself to the grocery store or to church.

 

 

Activity Appliances

Find implements, which help accomplish tasks you enjoy and tasks you need to do. I will list several.

 

I am a cook. Things like a standalone mixer, a bread machine, and a food processor help make life much easier in the kitchen. Using a hand held mixer is a disaster for someone like me with limited balance. Rather, than saying it is not possible, I bought the standalone mixer.

 

I enjoy making and eating bread. But kneading is really difficult. So I let the machine do the kneading and temp control and then bake in the over. (It tastes better). Ozo makes liquid measuring cups that are set on a counter and read by looking down. Holding up a traditional measuring cup and reading is difficult for me.

 

I bought a new computer. Like most people who buy a computer these days, it is a laptop. The keyboard and mouse were a problem. So I bought a standard wireless keyboard and mouse, which make the computer much easier for me to use.

 

Writing legibly is very difficult and frustrating. So, I type almost everything. I do write checks by hand and add items to the grocery list. When I send cards, I send ecards 90% of the time. I also have a service which sends me an email when I need to send a card to a specific person. That way I do not forget birthdays. If I need to send a paper card I sign the card and include a typewritten note.

 

I do not do crowds well. So I do very little shopping in stores. Ninety-five percent of my shopping in online.

 

“Outside” Activities

It is very important to involve yourself with activities outside of your family. First you might want to begin with a local Stroke Support Group, often sponsored by hospitals. This is a good way to socialize. It places you in a group much like yourself.

 

Many stroke survivors are not able to return to work. If working is possible for you by all means return. You may also want to look at employment in a new area.

 

Volunteering is a good way to be involved. If you were volunteering before the stroke and it is still physically possible, go back to that situation. If not possible or you find yourself no long interested, find something else. Good places to start are your church, synagogue or mosque and health related organizations. Your local hospital may have a program which works for you.

 

Take your time to explore possibilities.

 

 

My best advice is to remember you are in it for the long haul. The past will not return. Keep working on the new you!

 
 
 

Copyright April 2012

The Stroke Network, Inc.

P.O. Box 492 Abingdon, Maryland 21009

All rights reserved.