On Wednesday Jim had his 3rd ALS Clinic appointment. This is a semi-annual appointment were pALS (people with ALS) round-robin through different specialties in an all day appointment. The visits include physical, occupational and speech therapy, neurologist visit, nutritionalist, social work and pulmonary function tests.
The day started out with a commute of over two and a half hours to get to the Cleveland Clinic (which is about 25 miles away.) After being over an hour late his first stop was occupational and physical therapy. Interestingly enough despite some loss of strength in Jim's left hand his overall strength is very good. As it turns out Jim really is not as weak as he seems in his upper body however, his body is not able to communicate correctly with his mind. One main problem is he is unable to fully adjust to the change of central gravity when he lifts things. Jim's mind doesn't process everything correctly - for example if you ask him to raise his arm and tell him to not let you push it back down he appears weak. On the other hand, if you tell him to "fight" you and don't let you push his arm down he is stronger.
At his nutritionist visit we discovered Jim lost about 8 pounds since his last doctor's visit. (yes he lost weight over the holidays!) Losing weight is not a good thing for ALS patients. We learned some tricks to increase his protein intake. For now we are going to start by adding a daily protein shake. We will go from their. I really don't believe it is a matter of calorie counting - anybody who knows Jim knows there isn't a problem there! The other concern with eating is Jim's ability to swallow. Thank goodness Jim's is still very good.
During the visit we agreed to allow the neurologist perform a skin biopsy for research purposes. They took a sample of skin from under Jim's arm. These cells can be reverted back to stem cells and grown. Hopefully this will help researchers discover the causes of ALS/FTD and identify any genes involved. The research is being performed as a team effort by the Cleveland Clinic, Cleveland's University Hospital and the NIH - National Institute of Health.
Jim made it through the test with terrific assistance/ support from his Aunt Mary. I was SO glad that she was there to help calm him. She did a much better job then I could have and I think without her help and support Jim would not have continued with the biopsy. Luckily, he trust both of us and now agrees it was an important thing to do.
While meeting with the neurologist Dr. Pioro Jim was re-evaluated for his blood pressure issues. It turns out that Jim is still having issues with his blood pressure changing depending on his position. This is not usually a symptom of ALS but it may or may not be related. Dr. Pioro says it may be the disease affecting the autonomic nervous system.
We also found out that Jim's lung capacity has decreased by 10 - 15% since September 2010. His pulmonary function test showed Jim's breathing to be at 65-70%. What does this mean?? This measure reflects the amount of air Jim can inhale/exhale. A result of 85% or higher is "normal" (Jim was at 80-85% in September.) A number lower then 60% is considered moderately abnormal. A better explanation can be found at: http://www.focusonals.com/respiratory.htm
Given his breathing and blood pressure issues Jim will be going through some more tests (much to his delight. Actually as long as there are no needles involved he is good to go.) He will be having a tilt-table test and a QSART (quantitative sweat axon reflex test) which basically tests the nerves that control sweating. Both are non-invasive. After the testing he will follow up with a pulmonologist (yes another ologist to add to our collection!) Unfortunately, that appointment will not be until May. Ugghh... However, Dr. Pioro didn't seem to have a problem with that and I trust his judgement.
Now we prepare for a much needed break. We are taking a "mini-vacation" to Splash Lagoon - an indoor water park in Pennsylvania. Jim's Uncle Dave, Aunt Jean and cousins Darcy and Matt gave us a gift certificate for Christmas last year and though we were eager to use it I am glad we waited. We just need some "whatever" time with the kids. No schedules and no appointments. Say a prayer all goes well. I think it should
So until next time....
