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Superdecooper

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It’s official. Doc called and said his clinical diagnosis is PD  

starting on Rytary in a few days.

welcome to the club.

or something.

Edited by Superdecooper

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Ahh, so denial is still kicking around, but it’s being replaced by a little guilt and frustration. The Rytary has all but stopped the tremors and even alot of the pain and cramping and stiffness. 

So that means I have Parkinsons. And the diagnoses from the Johns Hopkins MDS is correct. But I don’t want to believe it. Then I look at the bottle of medicines and I have to acknowledge that I’m actually taking carbidopa/levodopa. And i have to admit that it’s working.and the tremor that started in earnest last September is finally under control for the first time in years.  I had guessed this was probably PD last Fall,  but i had been ignoring the changes to my health over the last three years. 

 I allowed the docs to adopt a wait and see approach, even though some symptoms were getting worse over the last six months. Sort of frustrated with myself about that -  Why didn’t I just act sooner and find a better MDS last fall, rather than accepting an appointment with a fellow. 

Maybe I could have saved myself months of frustration. I guess you can always look back with certainty about the things you did in the past. Folks tell me I’ve been proactive in caring for myself. I feel like I didn’t trust myself enough - so that’s just a bit of guilt.

im working through the emotions here...

-S

 

 

Edited by Superdecooper

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3 hours ago, Superdecooper said:

Ahh, so denial is still kicking around, but it’s being replaced by a little guilt and frustration. The Rytary has all but stopped the tremors and even alot of the pain and cramping and stiffness. 

So that means I have Parkinsons. And the diagnoses from the Johns Hopkins MDS is correct. But I don’t want to believe it. Then I look at the bottle of medicines and I have to acknowledge that I’m actually taking carbidopa/levodopa. And i have to admit that it’s working.and the tremor that started in earnest last September is finally under control for the first time in years.  I had guessed this was probably PD last Fall,  but i had been ignoring the changes to my health over the last three years. 

 I allowed the docs to adopt a wait and see approach, even though some symptoms were getting worse over the last six months. Sort of frustrated with myself about that -  Why didn’t I just act sooner and find a better MDS last fall, rather than accepting an appointment with a fellow. 

Maybe I could have saved myself months of frustration. I guess you can always look back with certainty about the things you did in the past. Folks tell me I’ve been proactive in caring for myself. I feel like I didn’t trust myself enough - so that’s just a bit of guilt.

im working through the emotions here...

-S

 

 

You have come a long way. You’ve educated yourself and are ahead of most people in your shoes! 

 

Michael JFox..... Acceptance doesn't mean resignation; it means understanding that something is what it is and that there's got to be a way through it.

 

stay strong & stay hopeful!!

 

LAD

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On 6/17/2018 at 8:18 AM, Superdecooper said:

Ahh, so denial is still kicking around, but it’s being replaced by a little guilt and frustration. The Rytary has all but stopped the tremors and even alot of the pain and cramping and stiffness. 

So that means I have Parkinsons. And the diagnoses from the Johns Hopkins MDS is correct. But I don’t want to believe it. Then I look at the bottle of medicines and I have to acknowledge that I’m actually taking carbidopa/levodopa. And i have to admit that it’s working.and the tremor that started in earnest last September is finally under control for the first time in years.  I had guessed this was probably PD last Fall,  but i had been ignoring the changes to my health over the last three years. 

 I allowed the docs to adopt a wait and see approach, even though some symptoms were getting worse over the last six months. Sort of frustrated with myself about that -  Why didn’t I just act sooner and find a better MDS last fall, rather than accepting an appointment with a fellow. 

Maybe I could have saved myself months of frustration. I guess you can always look back with certainty about the things you did in the past. Folks tell me I’ve been proactive in caring for myself. I feel like I didn’t trust myself enough - so that’s just a bit of guilt.

im working through the emotions here...

-S

 

 

Have to admit I tried to figure out if my MDS had somehow slipped a placebo in place of the real meds.  And the effect was almost instantaneous for me too, which made me think it was in my mind.  I sooooo wanted to believe I didn't really have PD.  But, it was for real.

 

Sorry man.  But I can say that life really does go on, and with the meds it's way better than without.

Edited by stump

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