Suzannah
Distinguished member
- Joined
- Mar 19, 2014
- Messages
- 132
- Reason
- DX MND
- Diagnosis
- 08/2014
- Country
- Uni
- State
- TEXAS
- City
- Deep in the Heart of
Hi all,
As my title suggests, I am headed to the NIH (National Institute of Health) on Monday to take part in a research study on inherited neurodegenerative disorders. My current diagnosis is hereditary spastic paraplegia, but I have no family history of it and my symptoms don't really match up that well. I'm really excited to get to see some of the top researchers in the county to see if I can get any more insight into what is going on. And who doesn't like science? I can't wait to see their facilities.
After all the diagnostic stuff last year, I decided that if I'm going to do any traveling, I better do it soon while I'm still relatively mobile. So I have been to a bunch of places this part year. And I decided if I was coming to Washington DC, I might as well make a trip out of it. So I came this morning (Saturday) and am playing tourist for the weekend. It is only the second time I have gone on a trip by myself (mostly travel to see family or go with groups). It is good, but hard because my deficits are so much more clear in new situations.
I almost didn't make it on the plane. I was up really late getting beverything being ready and had to be up at 5am to drive myself to the airport, so I couldn't take my night meds. My legs were so spastic this morning that I could hardly lift my feet of the ground and was staggering around like a drunk person. When I was walking to the parking shuttle, my foot didn't clear some oddly placed concrete, and I fell. HARD. My hands were full so I couldn't catch myself, and I bashed the heck out of my knee. It is tremendously swollen and bruised, but luckiky doesn't hurt too much. It scared me. It's the fourth time I've fallen this year, and by far the worst. I am grateful it wasn't worse, though.
Looking forward to another day of touristing tomorrow and then science-ing Monday!
Suzannah
As my title suggests, I am headed to the NIH (National Institute of Health) on Monday to take part in a research study on inherited neurodegenerative disorders. My current diagnosis is hereditary spastic paraplegia, but I have no family history of it and my symptoms don't really match up that well. I'm really excited to get to see some of the top researchers in the county to see if I can get any more insight into what is going on. And who doesn't like science? I can't wait to see their facilities.
After all the diagnostic stuff last year, I decided that if I'm going to do any traveling, I better do it soon while I'm still relatively mobile. So I have been to a bunch of places this part year. And I decided if I was coming to Washington DC, I might as well make a trip out of it. So I came this morning (Saturday) and am playing tourist for the weekend. It is only the second time I have gone on a trip by myself (mostly travel to see family or go with groups). It is good, but hard because my deficits are so much more clear in new situations.
I almost didn't make it on the plane. I was up really late getting beverything being ready and had to be up at 5am to drive myself to the airport, so I couldn't take my night meds. My legs were so spastic this morning that I could hardly lift my feet of the ground and was staggering around like a drunk person. When I was walking to the parking shuttle, my foot didn't clear some oddly placed concrete, and I fell. HARD. My hands were full so I couldn't catch myself, and I bashed the heck out of my knee. It is tremendously swollen and bruised, but luckiky doesn't hurt too much. It scared me. It's the fourth time I've fallen this year, and by far the worst. I am grateful it wasn't worse, though.
Looking forward to another day of touristing tomorrow and then science-ing Monday!
Suzannah