My trip to NYC

[ALC]

Hi everyone,

My family has just been through the loss of a close family relative and decided to get away for Christmas to take our minds off of things. We went to New York City and of course my kids wanted to see the tree at Rockefeller Center, go to the Radio City Christmas show, skate in Central Park, etc. Here's my OT report. The crowds were incredible, many more people than when we'd traveled there in the past. Just crossing the street was like moving around Times Square on New Year's Eve. Or maybe like scenes from the Tokyo subway I've seen on TV.

It is scary to be in crowds like that when you have OT. All the pushing and shoving makes waiting the for lights to change to cross the street unbearable. I realized that I could never live in a big city again now that I have OT. Thank goodness for my 14 year old son who served as my "human cane" (his words) so I did not fall and get trampled. I was suprised at how little all of these places do to make their events accessible, even when you tell them about your disability. It is amazing how tired I (we) become just trying to remain upright. I am a relatively fit person and the muscles in my hips and thighs were so sore. I also have tremors in my jaw and arms that get worse as my leg tremors worsen. The jaw tremors cause TMJ which at best makes me dizzy and at the worst cause vertigo and more balance problems.

By the time I got to the train show at the NY Botanical Garden the lines were so long I borrowed a wheelchair. This was a first for me, but I needed to get past my pride. It was hard to see the worry on the kids' faces. It made me realize how symbolic this step was - that the wheelchair made my disability more real to them. I also realized how much of the time I "fake it" and act as if I am not feeling the tremors. It's getting harder to do that now. I must accept that my OT has progressed and from what you all report, it will continue to progress. Like Kaylie, I take the clonazepam to take the edge off, but unfortunately the honeymoon period of it giving me significantly more standing time is slowly disappearing.

I will end on a positive note and say that we did have a wonderful time, despite the crowds. It is so important to continue to do the things that are meaningful to you. My husband was reluctant to take my picture in the wheelchair, but I made him do it. I will do whatever I need to to keep up with my family and find ways to enjoy the things I always enjoyed.

I don't know if this has happened to you, but isn't it strange seeing pictures of yourself "before" you had OT? Sometimes I look at them and I think about how I had no idea at the time that my life would be so changed 5 years later. I guess that's what dealing with any disability is like. Acceptance is an important part of coping.

Amy

[stella R]

HI YES I CAN SURE RELATE TO THAT FEELING.
I OFTEN WONDER WHAT IT WAWS LIKE TO WALK LIKE OTHER PEOPLE.
BUT I HAVE ACCEPTED THIS DISEASE.
I ALSO HAVE BAD ANKLES.
I TAKE MY GABAPENTIN. NOT SURE IF IT HELPS OR NOT.
BUT MY FRIENDS ARE SO GREAT TO ME AND THAT MAKES ME VERY HAPPY.
I TRY AND DO AS MANY THINGS THAT I CAN.I KEEP BUSY.
MY WALKER IS A BLESSING TO ME. COULDN;T GET BY WITHOUT IT.
HOPE EVERYONE HAS A HAPPY NEW YEAR.
TAKE CARE
STELLA