Heads up, this post is long and kind of a "what's happening". Jeff thought it would be good to write as it may be of interest to some people. It is an update on where I am with ALS.
Drugs. There is one FDA approved drug for ALS patients and that is Rilutek. I take one pill in the morning and one pill at night. Have I noticed any difference? No. Will I keep on taking it? Sure. Will I travel to a remote country looking for a cure and then drink boiled avacado peel mixed with powdered monkey toenails in an effort to heal myself?
(Bleep) no. There is a clinical trial study that is starting soon at the Neurology Clinic using Lithium. The study is currently full and I am getting on the waiting list. It is based on a study that was done in Italy using Lithium. It had extremely promising results for slowing down disease progression in some people. In the original testing the study size was very small. Hence the need for a larger scale study to see if the results are similar.
Atrophy (that should be a
"bleep" word). I am noticing the muscle atrophy most significantly in my arms and hands. I look at my hands and arms and barely recognize them. My hands look so thin too me, there is little muscle left. I am used to having toned arms and feeling muscle move underneath. Now they are soft. It is disturbing because I feel like someone else's arms were stuck on my body.
Every week there is some new task that has become more difficult. Peeling back the lid for pudding cups, holding a skinny pencil, lifting objects over my head, buttons, shucking corn, using fingernail clippers, pushing the release button on car seats, pulling open a new bag of cereal, opening and closing ziplocks, turning the key in Jeff's car (two hand task), and removing the gas cap on the car. Showering and washing my hair is tiresome. To then comb it out and blow dry is exhausting. I rarely use a curling iron and opt for a ponytail. I use the hairclip type, the elastics are now too difficult. Putting on makeup takes significant effort. Lucky for me that last one has never been a major part of my life.
People comment that "Well, you look like you are doing pretty good?" I try to smile because on a physical level compared to where I once was I feel like
(bleep). My left foot drops a bit which changes my gait so I have to concentrate to keep it lifted up. The upside of this concentration is that I don't trip and stumble nearly so much as I used to. But when was the last time you had to focus on "walking". Pushing Megan in the stroller is like a walker in disguise. It helps my balance and I go faster this way than if I were solo. I do have a foot brace that I use when in the mountains on a lot of uneven terrain. I really miss running.
It blows my mind that I just can't take a medicine and have this whole thing go away. Last month for instance I had a really gross cough for two weeks. I was given a prescription medication and wha-laa it was gone within a week.
Talk about mind boggling...the fact I can't work out harder to get stronger. Ah
(bleep). Instead of running for 4 miles and then lifting, my workouts consist of getting on the elliptical for 20 minutes and then the recumbent bike for 10. I vacillate between different levels of fatigue (come to think of it, what mother of young children doesn't!). I have a finite amount of energy and when it is gone, it's gone. While sea kayaking in Maine I was on the water for a fraction of the time I would have usually been. That night while getting ready to go out for dinner my arms were so tired I had to ask Jeff to pull my hair into a ponytail. He is good at many things, but we need to work on the ponytail...not too tight...ouch!
Lucky for me, Jeff is extremely proactive about the situation. He has been making sure our basement gets finished. Has had a group come in that tells you how to make your home more ADA accessible and where to put in
(bleep) wheelchair ramps. He has been dealing with legal aspects to prevent any sort of future headaches. Jeff even went to an ALS support group a couple of weeks back while I was visiting my parents. I'm not interested in going to those yet. It is hard to not be able to mend a situation 100% so doing whatever he can is therapeutic for Jeff.
If the disease would stop tomorrow (6:30-ish, before the kids get up that would be nice) I would take this existing body as is and be thrilled. Let me live to be "old". The funny thing (not necessarily hahaha kind of funny) is that despite the obvious disease progression I am not accepting that I will die anytime soon. Stubborn. Jeff and I joke how our kids are doomed because they have stubborn on both sides of the family.
On an emotion level Jeff and I are doing mostly really good. We talk a lot with each other and have some great friends/family we can talk to when needed. For how well we are doing, I attribute this to the power of prayer. Believe what you want but I
know there is a God who hears and answers prayers. I also know that God answers prayers in his own way and on his own timeline. I'm still thinking 6:30am tomorrow will work well. Many people have said, "your family is in our prayers". To that I offer my most sincere gratitude. Thank you.
This
ISN'T meant to be a pity entry, just an update on the facts. The situation is what it is. I will probably have another update in September after my next clinic visit. Until then, back to the fun stuff.
Some fun stuff being: We just watched Michael Phelps win swimming gold medal #6 in this Beijing Olympics. Wow he's fast!
First we skipped over the whole "do your jobs" thing and watched a movie. Then they found a box of pressed leaves. Each fall I see these beautifully colored leaves and will then pick and press them. I then put them in a box and promptly forget about them. I've accumulated quite the random collection over the years. So the kids found the leaves and we decided to put them to use.
Next on the agenda was shopping. This was Erik's idea. He has been so excited to buy his new back to school "Sketchers". We got Happy Meals for lunch and took them up to the lake. Okay, are there any kids out there who really eat the entire Happy Meal? Mine certainly don't. But they were in charge of activities. I was in charge of transportation.
Megan's vocabulary is expanding. She says "daw" for dog and "duu" for duck.
Can't you tell? We are making rainbow's with the hose. After that we played in the sandbox, ate dinner, gave them baths to wash off the sandbox, and the kids were asleep by 7:30pm.
