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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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Yep still in denial, but getting there slowly.. but really, who's rushing. Especially when I get more results to consider. The Johns Hopkins review (done by two separate radiologists) of my Datscan was posted yesterday...

I-123 DaTscan SPECT consistent with moderate dopamine transporter deficit in the bilateral putamina and mild dopamine transporter deficit in the left caudate. These findings are consistent with Parkinsonian syndrome.

 

 

Edited by Superdecooper

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Superdecooper,

I officially welcome you to our club that you did not want to join. We are glad you are here and being proactive. Once you get a good MDS hang on to them for as long as possible and work with them to get a good regime going.

Eventually you will feel in control again and you will reprioritize things and the turning of time wont feel so daunting.

Best of  luck to you

Feel free to ask any questions

Adam

 

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Hi adams234,

thanks you for the kind invitation...I decline!

first question: can I give my membership invitation back, no?  DRats, what is this the Mafia? Hotel California? 😀

i am dealing with this, but I am going to have questions on how to stay strong and be positive, like LAD says I should do. 

For now, thanks everyone for the encouragement.

-S

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I think we wish we could all give this membership back. First year is rough, but once you realize you can still do things you will feel much better. Try not to let your mind focus on what the future is going to look like. None of know. Just plan for now and hope for the best. The future will be what it will be.

Blessings

Adam

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29 minutes ago, adams234 said:

I think we wish we could all give this membership back. First year is rough, but once you realize you can still do things you will feel much better. Try not to let your mind focus on what the future is going to look like. None of know. Just plan for now and hope for the best. The future will be what it will be.

Blessings

Adam

^^^ This.

 

Take a look at my Summer Adventure thread.  PD sucks, but it is manageable if you commit to still going out and doing awesome things.  I won't stop fishing, hunting, kayaking (sometimes all 3 simultaneously), traveling, playing with my kids, accomplishing new things at work, and so on, until I literally physicaly can't anymore.  

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