ALL THOSE APPOINTMENTS

What a lot of appointments!

Let me begin by saying I absolutely despise auto correct. If you find errors that I have missed, please forgive me. I have to dictate everything now.

So this past week I went to Pensacola to complete several appointments. Each one seemed to be very brief and devoted to one or two things, I also went to complete genetic testing, but there was a flaw in the informed consent process so I wasn’t able to do that blood draw. I completed the informed consent this week by phone with someone in Houston and was able to donate a sample. They’ll be able to determine if I am in the 10% of patients with ALS who have a gene involved in the expression of the disease. Since I have no family members with ALS, it is very unlikely. My kids are obviously interested in knowing about this gene so that they can also keep current on their own health status. Anyway, this week I learned how to exercise my throat and diaphragm on a tiny device that I blow into. I also learned how to transfer from one surface to another such as a chair to the couch or a wheelchair to an examination table. You get the idea. I was measured for a prosthetics device to support my right ankle which was fractured late September. I still won’t get the device until next week, fingers crossed.

Since Thanksgiving, I have continued losing strength in my left arm and left hand. I can still feed myself most of the time. They gave me some assistive handles to help me hold a fork or spoon, but so far the fork and spoon just tear up the handles. Back to the drawing board on that one. While I was at the VA in Pensacola, I ran into several friends and patients in the hallways. I thought it was pretty interesting that some of my patients didn’t even recognize me in a wheelchair wearing a T-shirt and sweats with short hair. It’s not the doctor Lyle they expect to see so I have become invisible. There’s something to be said for being invisible. I will have to consider that more.

For the most part, I still feel pretty well. I’m not able to walk any distance and most of my traveling is done by wheelchair even in the house. I’m so excited that I received my power chair and got a dry run on how to use it. It’s got amazing bells and whistles and options for upgrading later on when I lose use of my hands. LOOK HERE IF INTERESTED: M5 Corpus (permobil.com) We did our first interview for the SAH grant, which is provided to remodel our home to make it accessible. There is a shit load of documentation that has to be provided for every adjustment that we may need. It is a government organization after all!

We were very fortunate to have the kids and grandson here during Thanksgiving. We had a lot of good food and good conversation. Some of the conversations are really difficult, talking about end of life issues and so forth but I’m glad I have the opportunity to have those discussions. Mike is a real hero on this journey taking care of everything, and I mean everything. We are planning to have the kids again over Christmas break.

The weather has cooled off here in central Alabama, so there’s not any yard work to be done. But I’m sure when the grass starts growing Mike won’t know if he’s coming or going. For the past 20 years my joy has been growing things. I especially love roses and other flowers. I’ve planted bulbs all over the place because I like the fact they come back every year. Before I got sick we had a chance to do some landscaping here in the Alabama property and I’m looking forward to all of those bulbs popping up in the spring.

Now that I have my outdoor power chair I’ll be able to ride around and enjoy the things that are growing. I hope to even be able to do some fishing in the Big pond. It will certainly be interesting trying to do it without working hands but where there’s a will there’s a way. Maybe Mike can duct tape a cane pole to my left arm. I’ve always been able to bait my own hook but I think those days might be over. The other day I remember saying to Mike as I looked at some frozen fish in the freezer, “those might be the last fish I’ll ever clean.”

I’ve had a few crying jags when I think about all of the “last times” I’ll do something, but I’m doing my best to remember there are so many “first times” I’m doing things as well. So here’s to many more firsts.