Yesterday I had my marathon appointment at the ALS clinic in Indy. My friend, Sharyll, and Stitch went along with me and we left my house at 0615 for my 0815 appointment. The first thing I noticed is that there were MANY people (inner-city hospital clientele) who are afraid of Stitch. Frankly, I find it somewhat amusing. He IS a BIG black dog, but how can you be afraid of a dog whose tongue is hanging out and whose tail is happily wagging????? He almost looks like he's smiling! The inner-city IS a different culture…that's all I can say.
How can there be a neurology clinic facility without power door entry? Well, there is one… I'm glad Sharyll was with me! I seriously think that everyone ought to spend an entire day in a wheelchair (without "cheating") once in their lives. It would change the world.
First, I was "checked in" … with questions about my functioning (there is an ALS "Functional Rating Scale"… my score is about 27 out of a possible 40). Next I saw the speech therapist and dietician. Basically I was encouraged to eat an afternoon snack (vs. going from 11am to 5pm w/o eating) and to do "relaxation exercises" before speaking so that my voice won't be so strained.
The respiratory therapist did my lung functions and I am doing great. She said I am the "poster child for BiPAP"... meaning that my BiPAP has allowed my breathing muscles to rest well enough that my respiratory function is being preserved. That was good news.
My "usual" neurologist wasn't there so I saw one of his colleagues. I liked him and felt that my issues were "heard" and discussed thoroughly without rushing. I'm going off of 2 meds and starting 2 new ones with hopes that some of my troubling symptoms can be diminished. One thing we discussed at length is how having "slow progression" is not always the good thing that people assume. It was interesting for me to hear that he often finds that people with slow progression have a more difficult time coping than those with rapid progression. It makes sense to me. To me, "slow progression" feels akin to having 100% body surface area, third-degree burns only not all at once…you get to get burned again day after day, one part at a time.
Next I saw the "crowd": the "Physical Medicine and Rehabilitation" doctor, the physical therapist, occupational therapist, orthotist (guy who does braces) and "durable medical equipment" guy. No big surprises there. I'm weaker on my left side; I was given a soft c-collar for head support when I'm tired. I got some "dycem" (sticky rubbyer-ish stuff that keeps things from sliding around) a "rocker-T knife" to cut food with. The P.T. recommended that I get a bed rail to help with turning in bed and getting out of bed. When Amy inquired on that for me today (I have an RX), she was told that Medicare/Medicaid won't pay for a bed rail because "eventually [I'll] need a hospital bed anyway". Welcome to socialized medicine.
After clinic I had lunch in the Riley Hospital cafeteria with my friends Ben and Sarah (I worked with them at Methodist). It was awesome to see them!! Of course, Ben, Sarah and Sharyll had to all compare their iPhone applications. It was funny! Sharyll has an app that "farts", Sarah has a "shotgun" that actually "cocks" and "fires" when you move the phone, and Ben has a virtual "light saber" complete with background music!
Then it was an excruciatingly-tiring, 3-hour journey home (the trip normally takes about 1.5 hours) since the service who transported me had to pick up another patient in Carmel "on the way" back to Muncie. All in all, it was a 12-hour adventure.
Stitch did great all day and he ate up all the attention (from the people who weren't afraid of him!). He was a great distraction for Sharyll and me during the exam-room waits between visits from specialists. He didn't even fart too much! J
Last night, my wonderful stylist, Terri, came over and colored and cut my hair. I was exhausted but so grateful to her for doing it. She did a great job and it is so nice to look in the mirror and see stylish hair! She is a GIFT!!!
Today I am tired. What a shock.
More later. Love, Claudia
