Seven people with ET
that I have known have died from falls. While the cause was not exclusively ET,
it was a factor in all cases. Personally,
my balance and gait have gotten worse. It is a combination of
my ET’s progression and the consequence of the surgical treatment of
I was proud of myself
because I had adjusted my balance to prevent falls. I was using my hands
constantly while I walked or rose. I thought it was working, but it wasn’t. I
had a very serious fall going up the stairs in which I seriously bruised my
kidney. I was doing just about everything wrong!
Realizing that, I did
something. First, I joined a water aerobics class. Many years ago, Jan Helper
in the Columbia ET support group had told the group how well water aerobics had
helped her. Finally, I started and immediately saw the advantage of doing
it – the buoyancy.
Second, I started
doing neurological physical therapy – with the emphasis on neurological. The practice
I go to only handles people with neurological disorders. My young physical
therapist fully understands movement disorders and their effects on the body.
While she is nice, she is tough – constantly pushing. I had Marine Drill
Instructors in the Navy; she is nicer but pushes just as hard as they did.
When I started, I
walked like an Emperor penguin. I leaned forward – my shoulders were tense. My
arms were out to the side, particularly my right one which was tense. I used my
hands for everything. I took short steps. I needed to use my core to walk
properly. I needed to relax, specifically my shoulders and arms. I had to quit
using my hands and learn to rely on my legs.
It is not easy to
learn how to walk again. It takes a lot of repetition and strengthening of the
legs. Of real importance is to relax, relax, relax.
therapist learned I did the water aerobics from 9-10am twice a week,
she scheduled me from 11:30-1pm on the same days. It takes me the intervening
time to change and drive. An important part of the therapy is that I must be
tired. At the end, particularly on Thursday, I am!
It is a long-lasting
effort. I must remain committed and persistent.
As I have said repeatedly, everyone’s ET is unique. This may or may not be right for you. However, alternative treatments for ET do work!
— Peter Muller