Appointments

I had a neurology appointment yesterday. My GP thought it would be good for me to see a neurologist for my MD, and the one with whom he set me up is awesome. On a personal level, he loves NOLA and is as irritated as I am with the reelection of Nagin the Racist, Useless A--, er, Guy. He was very interested in my career path and asked a couple of very pointed questions about current politics and the environment, concluding by saying he thinks I'll have plenty to do with my degree. On a professional level, he made a thorough initial exam of me and asked me several questions about my initial diagnosis -- thank the Higher Mom was there! He tested my strength and my mobility, and he set me an appointment today with occupational therapy for an assessment. He said that I should explore any and all possibilities of assistive devices and that there is a therapist in the Hutch Hospital OT department who has done some great work with another of his patients who has either MS or ALS.

Dr. M apparently has worked with a lot of ALS patients, and we talked a bit about the creatine supplementation for my SMA that I read about a while back thanks to my brother. He said it's been used quite a bit with ALS, and since ALS is pretty closely related to SMA (they're both forms of muscular dystrophy) he doesn't see any reason for me not to try it. The key is to have healthy kidneys, so I'll talk with him more about it once I see how this laser thing goes on Thursday.

He also told me to stay up on the SMA research, so I came home and started doing some searching through MDA's website and the primary research literature and came across two recent drug therapies. I haven't read in detail yet to see if these are therapies that are being used in a clinical setting only or if they have expanded to use for John Q. MD-Patient.

I kinda like being a science nerd and being able to read the primary research rather than just relying on the lay-public releases. ::grin::

I was in Hutch by a quarter of eight this morning for my OT appointment. Was pretty cool. She did an eval of my arm, wrist, and finger mobility/dexterity as well as my grip and pinch strength, then I got to do some goofy little tests that test the same. First involved her timing me while I picked up a variety of small objects (safety pin, key, finish brad, paper clip, nut -- stuff like that) and put them in a box. Then came the "nine peg test" -- put nine pegs in slots one by one and then take them out again. Then a test with different strengths of clothes pins -- removing them from one rod and putting them on another. I breezed through the pins of 2 lb strength, but I couldn't even get ONE 4 lb strength pin off the rod. Not that I didn't try, by God! ::grin:: I fought with that bad boy for about two minutes before I really wore out my hand and finally acknowledged I couldn't get it.

Last test was removing a plastic cone from a holder and placing it on another. Next cone stacked on the previous. I probably should have stopped at five because I couldn't easily get more cones on in the "conventional" manner, but I ain't learned how to compensate and give up THAT easily! I made seven and just couldn't get an eighth on because the stack was too high. As I was maneuvering #6 onto the stack with a grunt, I said to Holly (the therapist), "Did I mention I'm stubborn?" Mom just shook her head as I was growling and stacking the 7th and said, "She's been this way her WHOLE life. You see her having a hard time with something and ask her if she needs help and she says, 'NO!'" Holly laughed and said, "Well, she probably wouldn't be as far as she is today and able to do the things she can do if she WEREN'T a little stubborn."

Shut up, Anita! ::grins, hugs Anita::

After all the goofy tests which tell an OT a lot, she gave me some finger and hand exercises to do at home and said she wants me to come in and do exercises twice a week. All this will hopefully maintain the dexterity I have so that I can continue to do my research and type for many years to come.

Now, if I could convince Pauley to go to an OT . . . .