Another Update

This is an extension of my last post. A few people had questions and I realized I ha a lot in there that people didn't quite understand. Seeing how it came up a few times here is a further explanation:

In short, Jim has 2 neurologists. The current head of the Cleveland Clinic Neuro Dept is managing the FTD (dementia) - that was who his appointment was with. This Dr. is currently opening the Cleveland Clinic's Alzheimer's Clinic in Las Vegas - so he only sees his "hard cases" when he returns to Cleveland every few months. Well he is retiring - so we will get the new head of neurology to replace this doctor.

Jim looks a lot thinner then he did in December - his collar bones kinda stick out and his legs look a lot thinner. A year ago Jim wore a 34" waist, by Christmas he was in a 32" and now those look saggy too. However he remains a constant 165 pounds - no weight loss.

His bicep muscles spasm (or tremble) under the skin. This was not there in December. His calves have done this since at least July. He has night tremors (twitching) at night that he manages to sleep through - (I do not). In December they increased his anti-spasm meds which has controlled it until this last week. Right now the break-through tremors are mild so they will reevalute them in June and possibly raise the dosage again.

He is having left side pain (just under the ribs) that he rates 11 on a scale of 1-10. When it really flares up his pain meds don't touch it. This is new since last week. His 1st symptom (now almost 2 yrs ago) was the same pain on the right. Dr is not sure what this is - may be muscle degeneration from the ALS. But ALS doesn't typically effect these muscles.

A major symptom of this type of dementia is changes in behavior, empathy and decision making skills. Before his diagnosis I did not understand his thinking/actions and it would drive me crazy. Now I understand when I ask him a question (for instance) and he answers something strange - it is not him - it IS the disease. (An example I use is: Jim what color is the sky? He answers - not purple. In the FTD mind the answer is right. Instead I now ask "is the sky red or blue?" - then I get the right answer. This is a simplified explanation obviously.)

The dementia is causing increased aggitation in his behavior - so they subscribed a "calming" medication for this.

As for the ALS (Lou Gerhig's) - he has an ALS Clinic day every 6 months. It is a full day where you rotate through appointments with the neurologist, nutritionist, social worker and physical, occupational and speech therapy. It is a 6 hour day. They track his progression, meds, etc. This is run by a 2nd neurologist - he actually wrote the Doctor's textbook on ALS (literally).

Jim also has an in-home physical therapy (lower body) and occupational therapist (upper body) who come to work on stretching his muscles and work on reducing his overall stiffness.

A lot of Jim's ALS symptoms mimic Parkinson's disease (like the way he walks) which is also atypical. His ALS progression has been rapid - but could be much much worse. We thought he was loosing strength in his upper body - but he really is not. He has trouble lifting things, cannot pick up the kids and has trouble with fine motor skills. It is not his strength declining but something with his muscles. (A technical term I don't remember. )

In short (I know - too late) most patients with this combination of these diseases survive 18 - 36 mos. Given Jim's "abnormal" ALS symptoms his progression seems slower - hopefully giving him 3- 7years. Most patients in his case should be falling or wheelchair bound by now. His breathing is good - many are on a ventilator. God willing it will be a long time until we face that.

I have a blog for Jim: shaggymetz.blogspot.com I keep this updated with information. There is more info on both diseases including a FTD piece Channel 3 did "starring" a friend from my support group. Feel free to ask me anything. My role in this is to raise awareness and support.