I really miss the days Jim just collected model cars. This week he added to his new collection - of medication that is. I have been waiting to update until I had some more definitive answers to his new developments - but as I should have long learned with this journey those answers may never come.
About a month ago Jim had a tilt table test to check his blood pressure issues. (He has high blood pressure when laying down - 150s/90s, normal when sitting and low blood pressure -100 or less/50 when standing.) Overall he handled the test fairly well. As long as there are no needles he's pretty much ok.
Anyhow as part of the test the check his body's sweat response. His is abnormal which means his body does not regulate his temperature correctly. During the test he had to do some breathing exercises before the actual tilt table. During one of the exercises he passed out. I was in the room but entertaining Ruthie when this happened. I looked over when the tech said "We lost you there for a moment." Jim seemed to recover fine and the test went on. They did cut it short because it was obviously positive.
Later, I found out that when Jim passed out his heart had actually stopped for about 15 seconds. We literally had lost him for a moment. Scares me every time I think about it.
So what does that mean??? Well, we don't know. I have been working with both neurologists and they are stumped. The ALS neuro is currently consulting cardiologists for their opinion. But basically it seems that we might not get a good answer on that one.
As for the positive tilt table and sweat tests the answer is this: Jim has autonomic neuropathy. This means that the nerves that control his autonomic functions (his involuntary body functions, including heart rate, blood pressure, perspiration and digestion) are damaged and not functioning properly. Right now the biggest problem this is causing Jim is dizziness. So what can we do? In short, not much. I was warned of this prior to the test. Jim is now taking a blood pressure medication to help keep his blood pressure up. It also will help his body retain sodium to assist in regulating his blood pressure. Other then that there is not much else that can be done.
We are eagerly awaiting an appointment in May so that we may add to Jim's 2nd new collection. Another "ologist" - this time a pulmonologist. We will see what Jim's pulmonary function is then. There is a possibility that we will soon acquire a 4th "ologist" - cardiologist - but we are awaiting the other doctors' advice on that one. If Jim does need a cardiologist we will need to find one who is at least somewhat familiar with his conditions.
Jim has been attending physical therapy sessions to help with his movement. When he walks he has none of the natural upper body movement or arm swing that "normal*" people have. (*not sure how else to put that!) The danger here is that he can have balance issues which increases his fall risk. He actually really enjoyed the "work outs" and misses them now that they are over. We are trying to do as much as we can at home but it just isn't the same. He also has been attending water therapy and has 1 last session coming up. I see the most potential here. Once he gets over the temperture change he seems to do well in the pool. The water makes him stand up straighter. I hope to continue to take him to a weekly water therapy class. It is actually designed with arthritis and fibromyalgia in mind - but the stretching will do him good. Also, I think we will both benefit from the class. I am also looking into actually using our rec pass and getting him some time in there. I am going to inquire to see if there is a trainer that can help set up a stretching routine for him there. Unlike most people, actual exercise/strength training is not good for Jim. It can actually have the opposite effect on him - wearing down the muscle instead of building it up. What he needs is stretching and flexibility exercises.
So in short.... be careful what you ask for.....
You may not want to wish that you could eat a high salt, high fat diet and not exercise but still loose weight. I always thought that would be great.... now I am seeing it in person.
Lastly, right after my last post Grandpa Metz suffered a couple severe strokes. Initially we were unsure he'd pull through. After a stay in the Cleveland Clinic ICU he was transferred first to a "regular" bed there then to Lakewood Hospital. He was released a month later to a nursing home near us. A short 28 hours later he was back in ICU this time with sepsis. He finally has made it back to the nursing home. However, he is a mere shadow of the man he was just a couple months ago. He is unable to walk. His right side is nearly useless. He doesn't remember his own name let alone ours. His is unable to walk and has limited speech. He does however seem to recognize us. He lights up and smiles - especially when he sees the girls. Ever once in awhile the "real" Grandpa shines through - he knew Jim by name a few times and even told someone that Jim was his grandson. We visit him often. The girls like to see him and Mikayla even pushes him through the nursing home. Prayers are welcome for both him and Jim. Aunt Mary could definitely use a few dozen too for dealing with all of this and caring for Grandma too.
Sorry for the ramble.... Until next time.
