I cannot believe the last time I did this was in January! For everyone who has been asking how I have been doing, I apologize for being so remiss in my updates.
I went to my second ALS clinic at Emory on the 25th of May. The only real information we got out of the visit is that my breathing is not doing as well as it has in the past. On my first visit to Emory in November of last year, I scored a 102 on the respiratory test. In January, I was down to a 97 which was still considered excellent. During this past visit, my lowest score was a 77 and my highest was an 86. The trend obviously is not a good one and it had the respiratory technician a little concerned. She said the 80s are considered average for someone of my age and height, but the fact that I keep dropping could be a problem. She mentioned that ALS patients who begin respiratory therapy earlier seem to do better overall and wanted to get me qualified for some device to use at night. I ended up with scores that put me right above the range for qualification. Oh well, I’m really not looking forward to sleeping with something attached to me anyway. Associated with my respiration is a weaker cough. I noticed this a few months ago when I had a cold; it was very difficult for me to cough and clear my throat. I’m sure I sounded very ladylike in my attempts. While I did not qualify for whatever device they wanted me to use at night, they did have us order a cough assist machine to use twice a day in order to keep my lungs clear. I am not very pleased at having to use such a thing, but it will supposedly keep my lungs healthier and decrease the chances of pneumonia. Those are obviously good benefits so I’m going to get over it. The Emory doctor also prescribed me a new muscle relaxant medication to use at night. I have been waking up with some cramping in my legs and he thinks the muscle relaxant will help with that. He also thinks it may help smooth out some of my movements and to lessen some of the twitching. Supposedly, the only side effect is drowsiness so he told me to introduce it at night first and work up to taking it three times daily. We’ll see how it goes.
Considering that a year ago I hesitated to take Tylenol when I had a headache, I am shocked to find myself in the possession of two separate weekly pillboxes: one for my prescriptions and the experimental drug and the other for supplements and Chinese herbs. I have surprised myself at how willing I am to try my "alternative" pillbox, but I have reasoned that they are probably not doing any harm and could possibly help, so why not? I am still not having any noticeable side effects from the experimental medication. The blood work that has been done monthly also shows that my kidney and liver function are still normal. While I am obviously grateful for this, the medication has also not had the positive results we had hoped for. We had hoped the medication would slow or halt progression of the disease. There is really no way to know whether or not it has helped slow progression since we have no idea where I would be if I were not taking it, but the progression still seems fast to me.
While on the medication, I have noticed new muscle spasms along both arms, my neck, around my mouth, and down my feet and legs. My shoulders and legs are also considerably weaker which make daily tasks and walking more difficult. After taking a pretty bad tumble down my front porch steps attempting to walk the dogs, I am trying to be better about determining what I should and shouldn’t do. This is hard, though, because I want to continue to do all that I can for as long as I can. It seems an injury is required before I’ll concede. I do try to be very deliberate in what I do in order to avoid accidents; I think my grandmother might be able to beat me down the stairs at this point! Besides my jittery walk, the most annoying new development over the last few months is that my right hand has followed my left in terms of atrophy. I still have good use of my middle and ring finger on the right-hand which helps in some tasks, but writing has become very challenging. Holding a glass and utensils has also become harder, but it is still doable.
One of the harder changes to adjust to concerns my speech. I have always loved to chat with friends and family and meet new people, but I have found myself growing a little shy since I don’t like the way I sound sometimes when I talk. It definitely feels as though my speech has worsened in that it takes more effort to speak clearly and sometimes that effort does not pay off. I am trying not to let the slurring bother me, but I am not there yet. Please do not feel badly if you need to ask me to repeat myself; I would much rather repeat what I have said and be understood. Also, as a warning, I find it almost impossible to make myself understood when I am upset. If I stop speaking for a while, I am probably just trying to get control of my voice.
I know that all sounds pretty bad, but I’m actually doing okay. I am still walking and talking and enjoying watching Luke discover the world. Ellen is now coming to help during the weekdays from 10 to 7 and has become invaluable. Luke adores her, which makes it easier for me to leave for my appointments. I am still doing acupuncture and seeing a chiropractor and massage therapist every week. My chiropractor wants me to take yoga as well, but I have not been willing to add yet another appointment to my week. I may have limited control over the progression of this disease, but I do have some say in how much I am willing to give over to it. I want to be proactive and do what I can, but not at the expense of all of my time. I’m still trying to find a good balance.
As for the house, we are in full construction mode on the elevator enclosure. The add-on looks like it’s going pretty well, but the order on the elevator itself was delayed so it will not be ready until July. I am sure I’ll be fine until then, but it’s too bad this process will be so drawn out. Poor Luke probably does not remember what quiet sounds like. He seems to be handling it very well though; he actually likes to watch a lot of the activity in the backyard. It’s his personal TV show.
Today is Luke’s first birthday! He took his first steps on Mother’s Day and has become a pretty good walker since then. Yesterday, he was speed-walking through the house and clapping his hands very pleased with himself. He has also become pretty adept at using a spoon and fork, although he obviously gets very messy! He loves it though; Luke’s a very independent baby.
I guess that’s it for now. I’ll try not to let another four months go by before my next update. Thanks to everyone for the prayers! We definitely need a little help on this one.