Ch-ch-ch-changes

In an attempt to be proactive and "avoid the near occasion of falling," I have added a shower chair to my bathroom. I'm still getting used to it; the getting in and out part needs to be refined, but the sitting part is working very nicely. AND an added bonus is the chair back, over which I put a towel, soap it up, and then wriggle against it with my back! No more having to bother Miss C Claire with a task I know she hates. Touching me is bad enough, washing my back takes an incredible amount of fortitude on her part. I would try to be sensitive and cover everything but the area needing the scrub, sort of like I was preparing the area for surgery. Hopefully it will be a long while before we have to go THERE again.

Washing my hair is a new, happy experience as I am able to support my elbows on my legs as I bend my head over--eliminating the need to raise my arms over my head. My new bath gloves are VERY effective (once I get them on, which, admittedly, takes some time). Even with the gloves, however, I am having a harder time washing my neck because I can't get my hands and arms up that high in that position. Where the gloves come in handy is when I soap up the back of my hand--it gives me a little better flexibility.

Another change I'm loving is the new lever-style shower faucet handles. We've had knobs up until now and they were becoming impossible to turn. No more--now turning the water on is easy peasy lemon squeezy.

Fork required

Lunchtimes are becoming interesting, particularly when I eat a meal by hand. Wraps, sandwiches, tacos, burgers--all have become challenging and messy as hell. Not only is it uber difficult to hold anything securely in my hands at all; when I take a bite; the tiny bit of stability that DOES exist disappears and, more often than not, the sandwich threatens to fall apart. Burgers are the messiest of all, especially the good, juicy ones. Hot dogs, too--I have to readjust as I make my way down the bun.

Many napkins are used during the noon hour.

A follow up from Hopkins!

Hot diggity! Squeaky wheels, and all that...

---------- Forwarded message ----------
From: Elizabeth Mosmiller
Date: Thu, Jul 16, 2009 at 10:58 AM
Subject: RE: potential participant

Deb – just wanted to touch base before I go on vacation – we're working on getting you up here and enrolled in the study. Have to iron out a few billing/contract/budget issues, but at this point, it looks like we'll be able to enroll you. I'll get back to you as soon as it's sorted out. Have a great weekend.

Betsy

Lou Gehrig's co-worker's grandson

I went for a nice walk tonight -- 3.4 miles. The weather this July is unusually temperate and walking is a joy.

When I left the YMCA I remembered I had to get gas. Cecilia was not with me, so I called Jenny. She was already at her house, too far for her to come help me. I decided to rely on the kindness of strangers at the gas station.

I pulled up next to a pump and opened the little gas cap door, then I began my search. After a short moment a man came out of the Wawa and headed toward his car. I pounced. He very kindly agreed to pump the gas for me. He told me that, earlier in the day, someone had lent him some assistance, and this was his opportunity to pay it forward. I explained that ordinarily I had help, but not this evening. I also told him I had Lou Gehrig's disease, which he knew about. As it turns out, his grandfather used to work with Lou Gehrig at the New York City parole office, where he went to work after leaving the Yankees. This man, Tom Brodkin, always thought it was cool his grandfather had had this connection.

There was a reason I went to the gas station by myself tonight.

What I use to eat pudding

...which is packaged by our local deli in tall parfaitish cups. A small plastic spoon is not adequate, so I dug around in the breakroom and found this. My own personal pudding shovel.Yum.

I just noticed the image is reversed. Oh well, you get the idea.

Cái gì làm tình

Today I got a manicure and pedicure.

One of the technicians came over and was talking to the man who was doing my manicure. I don't understand Vietnamese at all but I could tell by the way she looked that she was very interested in my right hand. He responded to her inquiry (?) by turning my hand over. At this point I chimed in (ha ha, in English) and asked what was up. My technician said they were wondering why my hand looked the way it did. I told them the muscles were gone which satisfied them and the manicure proceeded.

Today's moment, brought to you by Louise the Disease.

The newbie

I was contacted today by a man newly diagnosed with ALS. He reached out to me because my profile indicates I am a runner; he, too, was an athlete.

I've seen his posts on the PLM website. He's searching for answers -- how, why, when -- just like we all do those first hours, days, weeks, and months after we are diagnosed.

He asked me about my running, whether I had given it up, was I worried about my muscles. He asked me about my diet, about my medications, about any studies I might have participated in. He asked me how I clipped my nails. He asked if I could swallow, or if my tongue quivered.

I answered him as best as I could, occasionally injecting as many positive aphorisms as I thought he could handle. During these early days, though, one doesn't necessarily want to hear Pollyanna-isms -- there's too much fear, anger, more fear, and sadness. It takes a while to understand that worry won't help; each day must be lived as best as can be with the hope you'll get another chance tomorrow.

Bless his heart.

Brother, can you spare a spinal?

Remember this?

I called on Wednesday, got voicemail, left a message. I did not hear back Wednesday or Thursday so, as you might expect, I called this morning. Betsy Mosmiller answered the phone on the second ring. She thanked me for calling and advised that Johns Hopkins was unable to enroll ALS patients because of cerebral spinal fluid (CSF) limitations. As it happens, the Biomarker Study people were going to pay $200 for each lumbar tap; $100 to Hopkins and $100 to the patient. But Hopkins charges $300 for this procedure, so there is a $200 deficit. I asked if Hopkins wouldn't be willing to waive the fee. I was told no. I said I would be willing to give up the $100 stipend. Still no. I understand that Betsy is not making these decisions, but I expressed my frustration and disappointment to her anyway. I explained that I have decent health insurance that might cover this procedure and asked if that would be acceptable. In my mind, it's crap like this nickel and dime mentality that are the real stumbling blocks to finding any sort of solution to ALS. Betsy said she would relay all of my comments and concerns to the organizers. Perhaps there is a way I can still contribute the plasma/DNA.

I wonder how much money was spent discovering a cure for erectile dysfunction.

Betsy did throw me a bit of a bone: they are doing skin cell studies at Hopkins. I offered to provide some of mine. She said the procedure is very simple -- very similar to having a mole removed -- but that there would be a little bit of scarring. I laughed and told her scarring was the least of my concerns.

Sigh.