On the subject of Jerry/Julienne's correspondence about relapse....
I'm coming up on 29 years in August of my initial TM attack. Other than the
time I became paralyzed again after back surgery to fuse my spine some 20
years ago (probably more from muscle atrophy than anything else) I've never
had a relapse. I have had some serious ups and downs. But my history is
pretty different from you guys because they didn't know what was wrong with me
in 1963. I had PT, but little other treatment at the time. And I've gone
through a half-dozen different diagnoses before my new neurologist finally put
the pieces of history together well enough to understand what had happened.
No chemo or steriods or anything for me....
But since I'm probably one of the longer term people on the list I can offer a
bit of long term insight.
I was paralyzed completely for a period of about 8 weeks (from C3 down), then
recovered over a period of about a year so that I was only paralyzed from the
waist down. After that, my recovery sped up considerably. By the time I was
in the third grade (I had the initial attack when I was 5), I could pretty
much do everything except run. I was very active, bike riding, horseback
riding, etc. But when I started growing fast, I developed very severe
scoliosis because the muscles in my back had re-developed very unevenly. From
that point forward, I was treated for the scoliosis more than for anything
else. The idea at the time was that my muscle weakness, spasms, pain, etc.,
had to do with my bent spine.
Thus the spinal fusion surgery that ended up knocking me back considerably
when I was 13. I recovered that time slowly but surely so that I regained
nearly everything I had after the first recovery by the time I was 15. Then I
had about nine or ten really good, healthy years. Throughout college, I rode
my bike everywhere. I couldn't walk very far, but I could get around real
well on the bike where I could allow the stronger muscles to compensate for
the weaker ones.
As I got older, I started having more and more problems. My new neurologist
assures me the reason is that we have to deal with some of the common aging
issues much earlier than the rest of the world. But he also says as long as I
keep healthy, eat right, keep the waste removal system running as smoothly as
possible and keep as active as I am capable, I'll be able to do as much as I
can now for years to come. Basically, he says it's something like active
folks who remain active in their 80s and 90s as opposed to those who become
couch potatoes after retirement and end up unable to do a whole lot 10 or 15
years later.
One of the things that happened to me that was unfortunate was that I had lots
of docs try to tell me NOT to do various things. I gave up horseback riding
and bicycling on the advise of doctors. My new guy says as long as it is
comfortable to me to keep doing what I can. Just make sure I don't exhaust
myself and that I drink plenty of liquids, don't get overheated and eat
healthy. Like an athlete in training. Since we often have to fight our
bodies to do things other people do easily, just keeping moving is an althetic
event.
So my advise to anybody who's coming out of the initial bad period would be to
get back to the things you enjoy that challenge your body a little bit as soon
as possible and to avoid babying yourself. When you do that, you lose muscle
tone and it is really hard to regain it. Since relapses are kind of rare
anyway, and since you were able to get through it the first time (proving the
strength to do it again if necessary), the more muscle tone you can maintain,
the better off you'll be years down the line.
Of course, one of the best exercises we can do is to swim -- or at least get
in the water and paddle around. You're near weightless, heat fatigue isn't an
issue, and a lot of times you can get a lot more out of your muscles in the
water. As a part of my PT when I was little, they put me in a whirl pool and
had me to do exercises there. And once I got back on my feet, every physical
therapist I talked to told me to get in the water and work my muscles. I
can't do a whole lot with my legs as far as quick propulsion across the lake
or pool, but I can kick them around and it gets the blood circulating and
makes my muscles feel good. It seems like that would make the cramping and
stuff worse, but instead it makes it better.
Like I said, my experience has been unusual compared to many of yours. In
fact, I understand that having had TM as a child is extremely unusual and
fraught with the kinds of problems I experienced when I started growing while
my muscles were re-developing in their own unusual patterns. But I've found
from reading your dialogue recently that my general experiences aren't much
different from yours.
And since I've been around a long time with this, I do have a different
perspective. Without knowing it was the right thing to do, I pushed myself as
a child to get back to "normal" -- to be like the other kids. And because I
did, I think I had a better long term recovery than some people do. I have
also found that when I have become depressed and quit being as active, I've
gotten out of shape really fast. Climbing back out of the hole has been like
mountain climbing after those periods, but dealing with teenage body angst and
the doldrums of the 20s with this body fight going sometimes makes one lean
toward giving up.
Don't take offense, but as a kid going to children's hospitals and then going
to adult clinics for folks with spinal injuries, I found a common thread. The
kids who've dealt with paralysis for whatever reason have a whole different
attitude about it, partially because they don't know better. In children's
hospitals, we sort of divided people who had lost partial function of their
bodies into two catagories and most adults fell into the later. The ones who
had the trauma (including wrecks, cancers, etc.), at a very young age just
take it as it is and try to get better. The older ones tend to become maudlin
and mope about and suffer and say why me. We who were long term survivors by
the time we were ten tend to just do it, whatever it is, including painful
therapies, because you have to and this is the way it is. Older ones are too
analytical about it all. Now having become one of the older ones, I
understand very well the need to analyze and try to understand. It is easier,
I think, to accept limitations when you already have the limitations of
childhood imposed on you.
Mind and body are intimately connected. If you can get your mind right, your
body can do amazing things to compensate for those it can't do any more. It
just makes you stronger. Part of getting your mind right is accepting what
the kids understand without having to go through painful self-analysis: This
is the way it is. This is what you have to work with. So work it and let it
happen. If you're given the gift of a good quick recovery, accept that gift
and know that you'll probably go through more bad times in the years to come,
but you made it through the first part and you can make it through again. The
critical thing is to keep strong and healthy so that when you do hit rough
seas, you can come back quicker. It is very much an athletic thing.
Conditioning is critical.
Use us or whatever kind of mental health pro your insurance can take (you can
also take advantage of college interns if you live near a school or public
mental health pros). But work through the issues of fear and go through the
grieving process for the lost function. It is a grieving process and it's
very much like losing a loved one in some ways. I still remember running when
I was little. I dream about it. A flash picture sometimes comes into my head
at the most unusual times. And I have to give it a mental flower and a kiss
and say goodbye again. Learn to look at yourself in a mirror and accept what
you've got as beautiful, as a gift from the higher being. That's the hardest
thing to do and I have to say I'm only just really learning to do it almost
all the time now nearly 29 years after.
But get your mind right. Work through what you have to and fight what you
don't have to. You are not a crip. You're an athlete whose sport is living.
It's a great sport.