Yesterday, Tim and I experienced our first visit to HCMC’s ALS “in-clinic” appointment. That just means that we spent 4 1/2 hours at the ALS clinic meeting all the various people on the ALS team there. We will be working with all of them closely over the coming years, so it was good to finally meet them. There are 8 specialties represented on the team – neurology, physical therapy, occupational therapy, respiratory therapy, dietician, social worker, ALS Association, & nurse practicioner; and we were able to meet 7 of them. Whew! what a long and exhausting morning!
First, we met with the neurologist, Dr. Bundlie. He is a gentle, older man that is so very thorough. Every time we mentioned something, he would get his pen and pad ready and ask, “Tell me more…” After a good amount of chatting on how things are going, Dr. Bundlie did his physical exam of Tim. I could tell just from watching how much more impaired his left leg is than his right; his left arm is than his right. This disease seems to be progressing first through his left leg, then right leg/left arm and finally it will eventually move into his right arm.
Tim & Doc talked about the alternative therapies he is trying right now. We had a friend with us that is a nurse. She asked the dr about the effectiveness of these therapies. Dr admitted that really none of them show any positive effect on the disease or the progression of the disease. The one Kim and I both have been most concerned about is the gluten free diet. So, Tim had blood drawn yesterday to see if he really is allergic to gluten. When we get the results of that back, he will be making a decision to continue or stop the experiment of a gluten free diet.
I think because of the gluten free diet, Tim has lost about 4 pounds since we had been to the clinic at the beginning of November. They are concerned about weight loss; they can definitively state that maintaining ones weight and eating a fattier food diet does slow down the progression of ALS. They have also seen the trend that leaner, younger men will often kick into hyper-metabolism as ALS progresses, which makes the disease process move a bit faster as well. Put all that together and Tim really needs to be choosing Big Macs, not grilled chicken caesar salads at the drive thru. We were told yesterday that they don’t want to see more than a 5% overall weight loss. Tim has already lost half of that acceptable amount!
On a positive note, the respiratory therapist took baseline measurements of lung capacity and musle strength. Almost all his readings were normal. So the ALS has not moved into his diaghragm muscles yet.
From the OT/PT side of things, we have a couple things rolling now. We will be having a 4-wheeled walker with seat delivered to our house soon. Tim is just not stable enough with the walking stick anymore. He is unsure about it, but I know that once it arrives, he will adjust to it very quickly. He had a chance to practice with one at clinic yesterday. He looks so much more stable with it. I am very grateful that the ALS equipment loan closet had one available that is tall enough for Tim.
Tim is planning on going back to work on the 31st. He is on the waiting list for a loaner motorized wheelchair to use just at work. This will help him to be able to conserve his energy. There are some logistics to work out, but I think this is a great move for him. He will be able to move from his desk to the lab to the testing rooms so much faster without such a huge expenditure of energy reserves. Again, he isn’t so sure about it, but I think that once he gets used to it and overcomes the mental block of being in a wheelchair, he will find it allows him to do his work so much better.
I’ll post more in a later blog – that is only about half of what we covered in clinic yesterday! I need to get my day started with the family now. Thanks for continued prayers. From this post, you can update your prayer list to include: the four wheeled walker gets here FAST, Tim could have a locked place to store a motorized wheelchair at work, his promotion would go through at work, my seizures would continue to improve, Tim would have a clear direction from the blood tests about the gluten free diet.
Just a note, the kids are doing OK, but they are still processing. Luke is very analytical about it all – he has only shown emotions about this situation when I first told him. Micah has been sad pretty much all the time. He is most affected at bed time. Simon doesn’t know how to verbalize what he’s thinking and feeling. He tends to have angry outbursts for no apparent reason. Just thought I’d give a short update on how they are doing. Prayers are appreciated!