Well, Wednesday Jim's lip start doing its best Elvis impersonation. The muscle on right side of his mouth (above the corner of his lip)started "fasiculating" or spasming. This really scared him - plus he was dizzy. So off to the doctor we went. Of course our regular doctor and our "backup" doctor were already booked - so we got to meet ANOTHER new doc. This one was actually very nice and took time to really read Jim's records before doing anything (novel - huh?)
He came in and introduced himself - asked Jim what was going on - and Jim of course looks to me to answer. I look at the doctor and explained the new symptoms. The doctor literally just stared at me - then apologized "I'm sorry I am just trying to absorb this. It is a very unusual diagnosis" At least he was honest!! In addition to the face spasms his night "tremors" have started to break through his medication again. (FYI - Difference between spasm and tremor - got me. Neither of these are the "right" term - just what I named them as they showed up in the beginning. The correct term is fasiculation.)
Anyhow, this doctor increased the medication to controll the spasms from 40mg to 50 and okayed him to take another 10mg if needed. He has taken 60 everyday since. If he doesn't take the extra before bed he gets up to take on in the middle of the night. He is noticing the muscle movements now - something he never used to. Part of the reason I think is because he can't help but feel and see them in his arms and face.
I called the ALS neuro's office assitant on Wednesday and left a message. Friday I called again and got no response - turns out the physician assistant is not there anymore. Thank goodness for the FTD Physician assitant for solving that puzzle. But now I wasted Wed-Fri waiting for a call that never came. So Monday I will start at square one with the ALS neuro's office. I hate wasting time!! Will keep you posted!!
Also, on Wednesday Jim's Grandpa was admitted to ICU with a blood sugar level over 1,000. Luckily he seems to be doing better, he is out of ICU but still in the hospital as of this post. An extra prayer is appreciated.....THANKS
Sunday, May 16, 2010
Thursday, May 6, 2010
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.
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.
Wednesday, May 5, 2010
Jim Update
Well, we had his appt yesterday. The FTD neuro is retiring and will refer us over to the new head of the department. However, he thinks much could be handled by the ALS neuro. His physcian's assitant promises us we will not fall through the cracks.
His next ALS clinic is scheduled for June 30.
The neuro says he thinks we are handling this well because I am accepting that Jim is the way he is mentally because of the disease and not because he is trying to be a jack a$$. Says that is a big hurdle for families to get over.
He says he can't believe that Jim hasn't lost weight - he to notices changes in his legs and shoulders. I told him that I bought him pants that were 2" smaller at Christmas and they already look big - he agreed. But his weight is stable - actually a little higher then a year ago. Again something else that doesn't make sense.
He is having intense pain on his left side (kinda like what he used to have on his right.) Jim says it's an 11 on a scale of 1 - 10. Neuro says this stumps him. ALS shouldn't affect those muscles - but then again Jim's ALS isn't typical.
Right now he is just continuing to treat this with pain medication. We also have in home physical and occupational therapy coming in a few times a week.
The doctor also noticed fasiculations (muscle spasms) in his biceps - this is new but I had a problem seeing them. He said it is not loss of strength in his upper body - but something else (can't remember the term he used.) Some kind of Parkinsons-like symptom.
Good news(???!!!) is that since Jim is not typical in his ALS progression so his prognosis is a little better. "Standard" ALS/FTD is 18mos - 3yrs.
Jim's prognosis is 3-7 years.
Hate to put all this info in an email/post - but don't think I can handle repeating it in detail over and over in phone calls. Any other questions please ask.
Prayers are always accepted! In the meantime enjoy life!!
His next ALS clinic is scheduled for June 30.
The neuro says he thinks we are handling this well because I am accepting that Jim is the way he is mentally because of the disease and not because he is trying to be a jack a$$. Says that is a big hurdle for families to get over.
He says he can't believe that Jim hasn't lost weight - he to notices changes in his legs and shoulders. I told him that I bought him pants that were 2" smaller at Christmas and they already look big - he agreed. But his weight is stable - actually a little higher then a year ago. Again something else that doesn't make sense.
He is having intense pain on his left side (kinda like what he used to have on his right.) Jim says it's an 11 on a scale of 1 - 10. Neuro says this stumps him. ALS shouldn't affect those muscles - but then again Jim's ALS isn't typical.
Right now he is just continuing to treat this with pain medication. We also have in home physical and occupational therapy coming in a few times a week.
The doctor also noticed fasiculations (muscle spasms) in his biceps - this is new but I had a problem seeing them. He said it is not loss of strength in his upper body - but something else (can't remember the term he used.) Some kind of Parkinsons-like symptom.
Good news(???!!!) is that since Jim is not typical in his ALS progression so his prognosis is a little better. "Standard" ALS/FTD is 18mos - 3yrs.
Jim's prognosis is 3-7 years.
Hate to put all this info in an email/post - but don't think I can handle repeating it in detail over and over in phone calls. Any other questions please ask.
Prayers are always accepted! In the meantime enjoy life!!
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