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 my ET.
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.
When my 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