- Fri Sep 07, 2018 8:14 am
Jo, welcome to the group. It's somewhat calming to know that you are not alone with your condition. I hope you soon find a neurologist who can accurately diagnose your condition. Just knowing what it is helps mentally. At first (two years ago) I thought it was my imagination. One of the hardest things for me to accept is that, when I think I should be able to something that I used to do, I just can't do it anymore. Gone are the days of hiking all over the White Mountains (Appalachian Range) in New Hampshire (USA) with my husband. Gone are the days of taking 30+ mile bicycle rides with my husband. (I can ride a stationary bike, but am afraid of falling off a two-wheel bicycle. Hmmmm, as I write this I just thought: why not ride an adult tricycle?) Gone are the days when I was the "Energizer Rabbit" personified, with boundless energy. The fatigue and exhaustion is very hard to accept. I had to come to grips with the fact that THIS IS A CONDITION, NOT A CRIME. Most people just do not understand it. That is their problem, not mine. It drives me crazy when we go to a restaurant and the hostess/server wants to take my rollator away from me. (One wanted to put it in an emergency exit access! Brainless at the least!) I have solved that problem by asking for, depending upon how many diners in our group, a table where a chair can be removed for my walker. Then I sit in my walker if necessary, or just put the rollator walker into the space where the chair was removed. Good luck to you in finding a neurologist who can diagnose your condition. I hope you have access to a teaching hospital where the specialists would be more attuned to the condition. Also, I personally will not take any of the medications "available" due to the risks of daunting side affects. My neurologist agreed that, so far for what is available, nothing works to alleviate the tremors. Also, I have found that excessive heat makes the condition worse. (This summer in New England [USA], we have had over 23 days of temperatures in the mid- to high-90s F, with high humidity.) Non-sufferers fluff that off as unbelievable. Again, that's their credibility problem, not mine. Good luck to you. Keep communicating.