A*S (or ALS) is the subject of today’s post.
I get a range of reactions from people in regards to my health.
Some people are surprised that I am not in a wheelchair.
While others are surprised to find out how difficult it is for me to lift Megan because they still see me walking around the neighborhood.
Another clinic day has come and gone so here is a summery of the 4 ½ hour long visit. Jeff and I invited along a friend who happens to be an occupational therapist. We thought she might find clinic day interesting from a professional view. Besides, how does that saying go…”misery loves company.”
We arrived at 12:00 for A*S (haha) clinic check in. There is no particular order for which clinic staff I visit with as they just rotate between patients. The first to come in was the Rep from the MDA (Muscular Dystrophy Association).
MDA Rep and Jeff
MDA Rep: I’m lining up speakers for the monthly support group meetings. Is there anyone you would like to hear speak?
Janae: Stephenie Meyer? (People I am kidding on this one but I just wanted to see his reaction. But now when I re-read it, it falls into the lame category. Oh well, haha.)
MDA Rep: I was thinking more along the lines with someone within the ALS (A*S) field.
Janae: Ahhh. I would like to hear from someone involved in the research of the disease.
And then we chatted about how things are going in general.
The Physical Therapist (PT) and the Occupational Therapist (OT) were next. Here is the PT doing a strength test.
PT: Let’s review some questions. Walking?
Janae: I have noticed my right foot is starting to drop.
PT: Have there been any falls?
Janae: A couple months back I did trip and rip a hole in the knees of my favorite jeans and bruised up my hands pretty bad. For the most part I take it easy and am very cautious so it has cut down on my falls.
PT: What about stairs?
Janae: Going up is easier than going down. I feel sorry for anyone who is stuck behind me while I’m going down. If I know someone is behind me I will let them go first, I’m soooooooooooo slow.
PT: How about writing and typing?
Janae: My writing is very slow. I have to concentrate and it is messy (I used to have very good handwriting as I had to practice page after silly page for a Landscape Architecture class). Typing is still okay but much slower than previous. If my hands get cold then typing becomes even more awkward and clumsy.
PT: Can you shower and get dressed by yourself?
Janae: Yes. But showering, conditioning, dressing, combing through my hair, putting on face lotion etc…it is an exhausting process. (I’m sure there are people who think my hair would look better smoothed out with a flat iron. Honestly I am past caring and only do it on rare occasion.)
PT: Eating?
Janae: I can eat, chew and swallow just fine. I use a sharp knife to cut my food (even pancakes) because a butter knife requires using extra effort. It is easier to cut food while standing up versus sitting down.
PT: Driving?
Janae: I can still drive fine.
The OT was in on all of this too. Plus by having another OT in the room (our friend), why they all ganged up on me! They lectured me on the importance of using energy saving devices, and conserving energy whenever I can, getting a brace for my right foot, and how to go about getting one of those tags to entitle you to a close parking spot. Of course the PT and the 2 OT’s were right. But for me to use a handicap spot I will have to be in really really bad shape.
Atrophy is u-g-l-y. I no longer wear my original wedding ring. Now it is a simple lightweight band.
Next was the Social Worker. She also wanted to know how things were going. I said we had a ton of help. Overall I’m doing okay on an emotional level but during clinic week I am more irritable because this is not something that normal healthy people do.
Clinic Nurse (These boots fit her personality)
N: Any changes?
Janae: I feel like my overall strength took another dip in October. Everything seems to be harder than it already was. There is something else weird that has started since my last visit. Maybe once every few weeks it feels like I get a Charlie horse in my throat and it is very difficult to get any air and breathe through my mouth. So I breathe through my nose until my throat relaxes and I can breathe normal again. The whole episode lasts maybe a couple of minutes.
N: That is what we call a laryngeal spasm. It isn’t necessarily related to A*S. They can be scary if you don't know what is going on. Try and stay relaxed until it passes as tensing up can make it worse.
Then she measured my breathing on a weird little device. I took it 3 times and my high score is 97% which is great.
N: Any shortness of breath?
Janae: Only if I try walking and talking at the same time for a long time.
My neurologist, Dr.Bromberg
Dr. B talked a little more about laryngeal spasm (if I spelled that right?). Not fatal and if I do happen to pass out then my windpipe will automatically relax and so then I’ll be able to breathe. Awesome.
-We talked about my fasciculation’s (the very subtle muscle twitches which are constantly flitting through my body).
-We talked about my difficultly in sleeping from my muscles getting stiff from just lying there. The current muscle relaxer isn’t helping a bit so he suggested increasing the dosage.
-He discussed other med. options (none of them sounded that great).
-He discussed an upcoming drug trial.
-Asked about my balance. It is awful.
Then Dr. B. tested my leg strength (good), arm strength (weak), hand strength (terrible). But I already knew that before going in.
I left with a few free devices from the PT and OT, a med prescription, an AFO prescription (brace) for my right foot, and a form for a handicap sticker (still don’t know about that one).
Me saying that I've had enough
There you go. My version of A*S clinic day to the best of my memory and with the help of the notes Jeff was typing on his laptop through the afternoon.
On Saturday afternoon Jeff and I were at a park with our kids. Earlier in the day I had attempted a minimal amount of yard work. Later, at the park I found myself exhausted and sitting on the bench instead of playing with my kids. I don’t like being a sideline parent. It sucked. Even Jeff mentioned how it was hard watching me sit there. Granted I would rather be outside on the bench instead of inside on the couch.
Here is where I climb up onto my soapbox (with some help, thank you Jeff) because I just want to say:
"Parents out there, next time you are at the park get off your A*S and go play with your kids. They'll have more fun and so will you."
