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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.
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Medical
Establishment
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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.
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Rehabilitation
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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.
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Alternative
Medicine
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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.
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Healing
Time
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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.
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General
Health
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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.
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Exercise
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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.
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Disability
Appliances
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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.
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Activity
Appliances
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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.
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“Outside”
Activities
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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.
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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!
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