Personally, I prefer the on-line community.....I can be there whenever I want and not when I don't; don't have to dress and go out to meetings; don't have to worry that someone you meet at a meeting will start popping in on you; and can be rather anonymous!
First, I'm so sorry you and your husband are facing this. Know that you can come here any time. Atypical Parkinsonism was my MIL's initial diagnosis as well. It's an umbrella term for a number of more specific neurological disorders, all of which are difficult to diagnose because symptoms tend to be similar among them and overlap each other. I strongly recommend doing as much research as you can; the more you can learn the better. I also highly recommend starting a journal...keeping a record of how he's doing from day to day...eg. any significant changes in mood, appetite, physical abilities, cognitive function, etc. It will be tremendously helpful in moving toward a more specific diagnosis...and you might find it to be a great cathartic release for you as well. Here's a list of the more common forms of AP. Try "Google"-ing" them and see if any of your husband's symptoms "fit" anywhere....it probably won't provide any real concrete answers but it's a good place to start:
Progressive Supranuclear Palsy (PSP) Multiple System Atrophy (MSA) Lewy Body Dementia (LBD) Vascular Parkinsonism Cortico-basal ganglionic degeneration (CBD)
Again, so sorry you're going through this. I wish you well. ((Hugs))
They are calling it atypical Parkinson disease. he is just beginning to also show some signs of dementia. We have just moved back into area and are working on our home to make it more handicapped accessible so that adds to the stress.
Hi Mary, and welcome! As far as finding an outlet for your concerns and frustrations, you've found it! This forum is full of wonderful caring supportive people all sharing (more or less) the same boat with you. If you're looking for a more physically interactive group where you'd go to meetings and connect with other people in your area coping with similar circumstances I'd suggest contacting your local Council on Aging. You say your husband was diagnosed with "a form of Parkinson's"....would I be correct in assuming it is a neurological disorder with Parkinson symptoms, and NOT specifically PD? My MIL has Lewy Body Dementia with Parkinsonism.
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Atypical Parkinsonism was my MIL's initial diagnosis as well. It's an umbrella term for a number of more specific neurological disorders, all of which are difficult to diagnose because symptoms tend to be similar among them and overlap each other. I strongly recommend doing as much research as you can; the more you can learn the better. I also highly recommend starting a journal...keeping a record of how he's doing from day to day...eg. any significant changes in mood, appetite, physical abilities, cognitive function, etc. It will be tremendously helpful in moving toward a more specific diagnosis...and you might find it to be a great cathartic release for you as well. Here's a list of the more common forms of AP. Try "Google"-ing" them and see if any of your husband's symptoms "fit" anywhere....it probably won't provide any real concrete answers but it's a good place to start:
Progressive Supranuclear Palsy (PSP)
Multiple System Atrophy (MSA)
Lewy Body Dementia (LBD)
Vascular Parkinsonism
Cortico-basal ganglionic degeneration (CBD)
Again, so sorry you're going through this. I wish you well. ((Hugs))
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You say your husband was diagnosed with "a form of Parkinson's"....would I be correct in assuming it is a neurological disorder with Parkinson symptoms, and NOT specifically PD? My MIL has Lewy Body Dementia with Parkinsonism.