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Topic Amantadine - what's the real scoop? Go to previous topic Go to next topic Go to higher level

By makrivah On 2014.08.23 09:19
We had our four month appointment with our wonderful neurologist this week. My PWP is now in the middle of stage two. Even though I've observed the decline, having it "labeled" somehow makes it harder, doesn't it?

An interesting observation was confirmed. The onset of symptoms on the other side (his right) has come on FAST and is now more pronounced then his left (which was diagnosed nine years ago). Strange disease, isn't it?

Dr. M added amantadine (100mg morning and evening, 12 hours apart). I understand that this drug smooths out the on/off times. I'm curious about your experiences with any side effects.

Just about a year ago the Doctor stopped Requip when I described weird behavior (which went away after weaning off). He almost re-prescribed it, but thought better of it.

Cognitive decline continues. Dr. M was rather stern with his admonitions about the "mind killer" (watching tv mindlessly while just sitting in his recliner for hours on end).

Dr. M also stated that my husband is "an excellent candidate for DBS in the next year or so."

I was surprised at how deeply affected I was by this appointment, more so than others. Too many subtle and not so subtle changes make this cursed disease TOO REAL. I am eternally grateful that my husband retains his gentle ways in spite of everything.

By Dazedandconfuse On 2014.08.23 11:00
I completely understand your emotions. Sometimes I feel like "I've got this" as my PWP and I manuever through this disease and then other times it hits me like a brick. I'm sure my PWP feels the same way. Our Dr. put him on amantadine twice a day and the only pronounced side effects is extreme fatigue about 20 minutes after he takes it. Interesting that our doctor hasn't identified what "stage" my husband is at but he was diagnose 2 years ago but in hindsight, he probably had it 2 years prior. I thought his weight was causing some of the behaviors...sadly no :( Anyway, I hope that helps.

By LOHENGR1N On 2014.08.23 11:46
With P.D. they estimate about 80% of the dopamine producing cell in our brain have died before signs enabling diagnosis are present. Which means we've had this for around 10 years pre-diagnosis. As for stages? Personally I don't care for them. I could be a late stage 5 of getting hit by a bus right now. To this Parkie stages are a count down and when used around me at times I can feel like they're counting down my time left or time they have to put up with me. (I'm sure others feel the same). I know most aren't meaning this but it could be the message a PWP takes away from hearing them.
Also with tinkering with medicines one can
slide back and forth between stages for a time

Live the time you have left to the fullest. Care
givers that goes for you too live the time left to
it's fullest as a couple or family. You have
enough on your shoulders without adding
stages to worry about. We, PWP and caregivers/partners can't stop the progression anyway andas we all present differently wasted energy and time spent watching for symptoms and stages can never be rregained. With this disease timing is everything.

By jcoff012 On 2014.08.23 12:16
When my husband was dx five years ago, they started him on amantadine, but after a few months, dropped it because it didn't seem to be doing anything.

I agree with Al about the "stages"...please do not let what the doctor said bother me, putting a label on where we are in the course of PD makes it harder to keep a positive attitude...and we NEED a positive attitude.

My husband just lost one of his best friends to a series of massive strokes. This was a man who was an architect, world travelled, bright, athletic, non-smoker, avid sportsman, only rarely drank alcohol...but these strokes came on rapidly and severely...I tell you this because of something his wife just told us three days ago (he died last night)..She said to me, "Jane, live life as if everyday counts as much as the day before. One day we were in the hospital thinking that was the end, then he rallied, then this...You just have to live and love while you can.You both deserve the best in life."

So, try not to let the stages you were told bother you too much. Accept the changes, but don't worry about what is next...His "next" may be far, far off in the future...Hugs and love to both of you, Jane

By carman96 On 2014.08.23 21:44
I don't have any experience with amantadine. But with all drugs you kind of have to wait and see how it affects him.
I don't believe in stages either. With my husband, it depends on how he feels at the moment. I know he is well beyond what they call stage two.
I just take each day as it comes and never even think about the stages.I agree with Al and Jane. I don't think it does any good to label it.

By Dazedandconfuse On 2014.08.24 10:41
I adore you all. The disease is completely unpredictable so I'm with you, stages be damned. Onward and loving day at a time. :)

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