Clinic Day

All in all, a great day at the clinic.

First met with Debbie the fill-in coordinator (Gwen was out). Not the most upbeat member of today's team; let us know she was burned out. Seemed impatient. I think she may need to look for some other place to coordinate because those of us attending this clinic don't need that kind of attitude. Lynne wrote me a note which she passed to me as if we were in 7th grade. It said "we don't like her, do we?" THAT made me laugh. NB: weight was unchanged (damn, still too fat) and my BP was not good. Normally I'm in the 110/72 range. Today it was 145-150/80-90. This seems to happen only at the clinic. When I go to the regular docs (gyn, gp), my BP is better. Think it's stress?

Then dear Ellen from the ALS Association. She did a check in with all of us. Her visit resulted in a "no needs" notation on my chart. We waited a bit and then headed down to the pulmonologist. I feel very inadequate with this doctor because I never breathe right the first time. Finally did it right and was told it was basically unchanged, but she'd noticed a bit of a wheeze. So now I am on something called Advair, which I'll take on a trial basis for a few weeks. I'm hoping it will make me breathe like an elite athlete and I can start tearing it up again. She also said there was no evidence of any weakness. Hooray!

So, back up to my "room" where I was next visited by the speech therapist and nutritionist. Made my faces and proved I could still drink water and was reminded to eat protein to feed my muscles. I think I can manage that.

The occupational therapist visited and showed me how to stretch my hand without putting too much stress on my joints (I was overdoing it). She gave me a spoon with a BIKE HANDLE sized handle to use. Oh my goodness, it's the weirdest thing. Also gave me a sheet showing different utensils I can order that will make eating easier. I will be like royalty of old, carrying my cutlery around with me from place to place. Instead of it being gold and sterling, however, mine will be some synthetic material with sideways heads. It all looks very Dali-esque. Was also given an rx for a resting hand splint to wear at night to prevent curling. Between the ugly curling claw and the equally ugly orthotic, my vanity is really taking a beating here.

Who was next? Oh, the shrink. Hadn't seen him before. He talked to all of us for a bit then made everyone leave while he talked to me. We discussed (CONTENT REMOVED), and then he left to meet with others. I wasn't crazy about this visit.

Dr Bayat was next. She gave me the grip test (24 right, 30 left), discussed twitching and how when the twitching STOPS it means the nerves are finally dead (so I will never again complain about the twitching). She did the standard strength test and observed more weakness in the right but still nothing in the legs or feet. The left arm and hand were unchanged. She gave me the rx for lithium which I will start taking the week after next. Then weekly check-ins with her for the first several weeks, as well as a series of lab work to be done a week after I begin.

Oh, and this one measurement she does with my hand, the Hoffman test??, had a different result from last time. Seems there was no response where before there was. Ha ha! I must be getting better. :)

Last but not least came the lab tech who took only one little tube of blood. Having been sent to the basement for gallons and gallons (or so it seemed) on my first visit, this was a treat. And speaking of treats, we had a bird's eye view of the popemobile as it headed up Pennsylvania Avenue toward the Papal residence!! Lynne was especially pleased with this, I think.

An interesting observation Dr B made in response to our inquiry: My left arm will likely experience progression similar to the right and, since that seems to be slow, it is to be hoped that the left will progress slowly as well. Anyway, it's still early days, but I am encouraged. As I've pointed out, it's been six months since my dx and I'm still functioning.

After all this, we ate, drove home, and I took a long nap. Got up and ran a great run with Lynne.

I'm so exhausted now, though, it's bedtime. Rilutek, Advair, and a bottle of water, then lights out.

Sweet dreams, dearest ones.