Well, after Jim's last visit there is only one thing certain - he does have FTD and some sort of primary MND (motor neuron disease), still possibly ALS. Right now he is not showing any muscle atrophy - therefore no definate ALS diagnosis.
I also found out that the FTD is also one of the 50 conditions on the social security "compassionate allowance" list. That is why he was approved so speedy and the term ALS syndrome probably didn't make a difference. Prognosis for FTD is 2-17 yrs, average being 8.
SO WHAT'S NEXT? ...
1. We are waiting for approval for a PET scan of his brain (show what areas affected)
2. Barium-swallow exam (due to choking issues)
3. Follow up with both neurologists in early December. (original one will treat the dementia &
behavior "issues" and the new one the MND
4. I am trying to get spinal tap moved up so results will be back for these visits (this is to check if
hereditary)
5. In December he will have another "battery" of tests. His follow-up will include meeting with
not only the neurologists offices but also an entire "team" : Physical, occupational and speech
therapists, nutritionist and a social worker.
I don't have a time scheduled for this yet - they are working on coordinating it so we can make 1 trip. Thank God for that!
How's Jim doing?
Pretty much the same. Still very unaware of most of this, which will get worse instead of better. Besides occasional muscle spasms - he told the doctor he has no symptoms! There are definate gait and motor control changes, though not always obvious. He is having a lot of leg muscle spasms at night. He sleeps right through them (wish I could say the same!)
Monday, October 19, 2009
Saturday, October 10, 2009
ALS Walk Update
I am pleased to announce "Team Shaggy" has offically raised over $3100!! There are still a few outstanding donations to be posted! Thank you everyone for your generous support!!
Thursday, October 8, 2009
ALS Clinic Appointment
All in all Jim's appointment went well. They still do not see any muscular atrophy so his diagnosis is Motor Neuron Disease (MND). The difference is the part(s) of the neuron that is affected. Jim's is upper neuron - affecting the part that controls the nerves & reflexes. ALS also effects lower neurons - or muscles.
He will have a PET scan scheduled when our insurance approves it. He had 7 tubes of blood drawn for testing today. He will follow-up with both neurologists in December and have his driving re-evaluated around February. He will most likely have a spinal tap in December. There is concern this may be hereditary since his maternal grandma had PSP (another neuron disease) and with his mom passing so young she may not have developed symptoms if she had it. (Early on set is 50, she was 46 and Jim is 36).
He is up to 8 pills a day & 1 powder supplement- his ADD meds (which he was on), a medication to reduce the rigidness in his muscles & help his walking (3xday) and a natural supplement "cocktail" = vitamins C & E, Selenium, Creatinine and Alpha-lipoic acid. These are supposed to help protect the neurons and hopefully slow his progression.
Though he may still progress to ALS, the prognosis for MND may be more favorable. It is not 100% fatal in all cases. However now the future seems more "sketchy." But we'll take it!
He will have a PET scan scheduled when our insurance approves it. He had 7 tubes of blood drawn for testing today. He will follow-up with both neurologists in December and have his driving re-evaluated around February. He will most likely have a spinal tap in December. There is concern this may be hereditary since his maternal grandma had PSP (another neuron disease) and with his mom passing so young she may not have developed symptoms if she had it. (Early on set is 50, she was 46 and Jim is 36).
He is up to 8 pills a day & 1 powder supplement- his ADD meds (which he was on), a medication to reduce the rigidness in his muscles & help his walking (3xday) and a natural supplement "cocktail" = vitamins C & E, Selenium, Creatinine and Alpha-lipoic acid. These are supposed to help protect the neurons and hopefully slow his progression.
Though he may still progress to ALS, the prognosis for MND may be more favorable. It is not 100% fatal in all cases. However now the future seems more "sketchy." But we'll take it!
Wednesday, October 7, 2009
FTD Article
FTD = Frontal Temporal Dementia
Here is a great article that my friend Katie (My "sister" in ALS care) gave me. Her husband, Glen also suffers from ALS & FTD. His story and Jim's are very similar.
If you have a minute read it - it really explains Jim.
http://www.alsa.org/files/cms/Resources/FYI%20-%20Cognitive%20Impairment%20for%20Professionals.pdf
Also, here is our ALSA website:
http://web.alsa.org/goto/teamshaggy-shelley
Here is a great article that my friend Katie (My "sister" in ALS care) gave me. Her husband, Glen also suffers from ALS & FTD. His story and Jim's are very similar.
If you have a minute read it - it really explains Jim.
http://www.alsa.org/files/cms/Resources/FYI%20-%20Cognitive%20Impairment%20for%20Professionals.pdf
Also, here is our ALSA website:
http://web.alsa.org/goto/teamshaggy-shelley
Victory- yet the battle continues....
Jim received his approval for disabilty today. Should start end of November. We are going to appeal the onset date though - they "picked" April 2, 2009 for the onset day. Not sure where they got that day from - so the next battle starts.
Tomorrow is our first ALS Clinic appointment. Hoping for more answers and direction.
Jim has had an onset of new symptoms this week - he is having problems getting Ruthie strapped into her carseat and getting the latch undone. This is the 2nd instance of upper extremity involvement. Not sure what that means.
Tomorrow is our first ALS Clinic appointment. Hoping for more answers and direction.
Jim has had an onset of new symptoms this week - he is having problems getting Ruthie strapped into her carseat and getting the latch undone. This is the 2nd instance of upper extremity involvement. Not sure what that means.
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