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Sep 2, 2009
On Wednesday Jim had his 3rd ALS Clinic appointment. 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!) 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 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. The Dr. 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%.

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, the doctor didn't seem to have a problem with that and I trust his judgement.

As I type this we are on a much needed break. We are taking a "mini-vacation" 3 days at Splash Lagoon - an indoor water park in Pennsylvania. Jim's Uncle, Aunt and cousins gave us a gift certificate for Christmas last year and though we were eager to use it I am glad we waited. We just needed some "whatever" time with the kids. No schedules and no appointments.

All was going well until today when I found out that Jim's Grandpa was taken by squad to the hospital yesterday. Though his dementia has been increasing significantly in the past few months he woke up with no idea how to feed himself. At one point he was trying to eat the plate. Aunt Mary asked grandpa to smile and to show his teeth - each request was foreign to him. Finally he did mimic her smile and had some drooping in his face.

The local hospital wanted to have him life flighted to Cleveland Clinic main campus, however he was transported by ambulance. They found his platelet count was horribly low under 10,000. (normal is 150,000 to 450,000.) Transfusions have not have the effect they hoped. He is obviously bleeding from somewhere but they cannot find where. They are unable to give him clotting agents due to the blood counts. They found dried blood on his back side and there is more blood then urine in his foley. (both not there in the morning.) This morning Aunt Mary went in to find dried blood in his mouth. He has had 2 Cat Scans in 2 days that show nothing. The doctor's want to do an MRI but grandpa is too aggitated and they are reluctant to sedate him in his current state. So until his blood levels even out we wait. Right now he remains in ICU.

I was going to cut our getaway short, however, it seems there is nothing we can do at home. Visitations are very limited and with the kids in tow nearly impossible. I tried to explain the situation to Jim but he doesn't understand it. Of course there is very little reaction from him (a symptom of the FTD.) So I will try my best to enjoy tomorrow and just pray. It is in God's hands. Jim's Grandfather is the closest thing he has to a dad. Since his dad passed his grandparents played a big part in raising him. Maybe it is best right now that Jim doesn't understand the situation.

Well.... until next time....
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