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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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OH my, what kind of magic pill is this? Started taking Rytary this morning. The tremor in my right hand is mostly slowed down, almost to the point of gone! 

 

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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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Parkinson’s is a word...not a sentence. I intend to have many Screw PD moments and to kick some PD ass for a very long time. (I am with Stump!)

LAD

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Ack. Wait a sec. you mean to tell me that as soon as the medicine starts wearing off, the symptoms start coming back. Seriously?!

ummmmm, this is definitely sucking. 

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28 minutes ago, Superdecooper said:

Ack. Wait a sec. you mean to tell me that as soon as the medicine starts wearing off, the symptoms start coming back. Seriously?!

ummmmm, this is definitely sucking. 

Yep.  That's one downside.  Meds are pretty short acting.  It may take a while to dial it in for maximum benefit.  You may find you need a higher dose, or more doses per day, or both.

 

I started on 1.5 tabs of instant release Sinemet 3x per day.  Backed off the mid-day dose to 1 tablet to combat sleepiness.  When that sleepiness came back I switched to Rytary 95.  Tried to get by on 2 capsules 3x per day instead of the recommended equivalent (for my age/weight/gender) dose of 3 at 3x per day.  That didn't work out so well, so I went to 3-2-3 capsules per dose but found I really did need 3 per dose, even at midday.  Then as things progressed my MDS upped it to 3 capsules 4x per day.  So far that schedule seems to be working fine.

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I am with stump as well.

This summer we are building a custom Vardo (sort of like a travel trailer) to camp in. I am starting a You tube channel called the Shakybaker, and I intend to keep traveling as much as possible.  

Take one step at a time. Celebrate all the good moments and the bad ones wont seem so bad.

Blessings

Adam

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I’m really not sure what to make of these PD meds. I honestly feel like I’m in my early 40s when I take this Rytary. It’s like stiffness and clunky movements evaporate and I feel like I can glide from place to place without a care. It’s the opposite of how I felt last week. 

It really reminds me of the athletic grace that I had in abundance when I took karate. That grace sort of slipped away in my early 40s. I do remember waking up saying something has changed around 2004. About 5 years later I started having the very first vivid dreams and kicking in my sleep, and sleep apnea problems, and low T. 

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41 minutes ago, Superdecooper said:

I’m really not sure what to make of these PD meds. I honestly feel like I’m in my early 40s when I take this Rytary. It’s like stiffness and clunky movements evaporate and I feel like I can glide from place to place without a care. It’s the opposite of how I felt last week. 

It really reminds me of the athletic grace that I had in abundance when I took karate. That grace sort of slipped away in my early 40s. I do remember waking up saying something has changed around 2004. About 5 years later I started having the very first vivid dreams and kicking in my sleep, and sleep apnea problems, and low T. 

By the time you notice the motor symptoms of PD you've already lost 60-70% of the dopamine producing neurons.  So it's entirely possible, and probable, that your PD actually started 10-15 years ago and it just took until now for you to realize it.

 

For years before my diagnosis something just felt, ... off.  I couldn't ever put my finger on it, and I never really said much as I didn't want anyone, including my wife, starting to think I was a hypocondriac.  Literally the day after I started on Sinemet that went away.  Would have been the same day but I started on an evening dose, so I was asleep not long after taking it.

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On 6/20/2018 at 6:41 PM, stump said:

Then as things progressed my MDS upped it to 3 capsules 4x per day.  So far that schedule seems to be working fine.

Is that a lot? My doc has me on Rytary 95, one capsule 3x a day. I’m a pretty muscular 6’2, 230lbs so I guess that’s why he didn’t start me on a lower dose.

You are taking more than three times as much sinemet as I am. But then, you’re not taking Azilect, which I gather you had a bad reaction to. 

 

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4 minutes ago, Superdecooper said:

Is that a lot? My doc has me on Rytary 95, one capsule 3x a day. I’m a pretty muscular 6’2, 230lbs so I guess that’s why he didn’t start me on a lower dose.

You are taking more than three times as much sinemet as I am. But then, you’re not taking Azilect, which I gather you had a bad reaction to. 

 

It's what I need.  It's supposed to be equivalent to 1.5 tabs of regular Sinemet per dose.  What are on is like half a tab of regular Sinemet.  So more like you're on a very low dose than me being on a high dose.  

 

Some people need more than others for good symptom control.  I know, because I did an experiment, that less than 3 capsules at 4x a day just doesn't give adequate control.  If you do get adequate control, for now, with 1 at 3x a day, stick with it.  Over time you'll begin to need more.

 

And yes, my Azilect experience was pretty bad.

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Deep thoughts on Sunday morning.

Here I am...dealing with the 5 stages of Grief:  grief, denial, anger, bargaining, depression, and acceptance. They are a part of the framework that makes up our learning to live with the one we lost.. or in my case, coming to grips with the life change that is PD.

I feel like I'm on a highway to acceptance, but there are these exits along the way that I  just have to stop at to check things out -- look at the vending machines, see whether the parking lines are straight; go to the restroom, look at the maps, smell the flowers - I can't stay there forever, but the rest stops do provide a break until I can get moving again.  I'm somewhere between the exits for denial and anger right now, and I can see the exit for depression just ahead. Obviously I need to learn something here, but it escapes me right now.

This is my life ..still an impossible mix of random and chaotic...I'm becoming a different person.

I feel like in life we are all given a box of gifts at birth that are shiny and new... like humor, empathy, athletics, looks, brains, etc. We open them up and experience the joy and pain of living. Towards the latter half when the box seems mostly empty, you get near the bottom and notice a few more pretty special gifts wrapped in elaborate paper - some tied with  darkly colored ribbons and fantastic designs.

Ahh, what could this be, you wonder, while opening one. Inside you find a gameboard and a pair of dice. Rolling them, they land on 5 and 6. Not snake eyes, but not a lucky 7 either. Wait! the 5 lands on five stages of grief and the six lands on parkinson's. What kind of game is this? And how do you even win?

I thought I knew what courage was, but I'm definitely getting a personal lesson in it right now.

That's where I am this morning... I will find a way or make one.

Edited by Superdecooper
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Well as I have been told, we all have a "right" to our own feelings. 

There are definitely good days and bad days with PD. If you're tired.......it definitely magnifies the bad feelings. Maybe just take some time for yourself. Do something you enjoy. Try not to be alone.....you only dwell and ruminate on "what-ifs." 

In your last sentence, I agree, you'll find a way. As much as we want to be in control.......we're not. We do have each other however.

Acceptance doesn't mean accepting defeat. It means accepting the challenge, and PD is manageable.

Hope you have a better day today, and if it doesn't turn out that way.......there WILL be better days ahead. There are rays of sunshine that poke through those dark clouds.

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7 hours ago, Superdecooper said:

Deep thoughts on Sunday morning.

Here I am...dealing with the 5 stages of Grief:  grief, denial, anger, bargaining, depression, and acceptance. They are a part of the framework that makes up our learning to live with the one we lost.. or in my case, coming to grips with the life change that is PD.

I feel like I'm on a highway to acceptance, but there are these exits along the way that I  just have to stop at to check things out -- look at the vending machines, see whether the parking lines are straight; go to the restroom, look at the maps, smell the flowers - I can't stay there forever, but the rest stops do provide a break until I can get moving again.  I'm somewhere between the exits for denial and anger right now, and I can see the exit for depression just ahead. Obviously I need to learn something here, but it escapes me right now.

This is my life ..still an impossible mix of random and chaotic...I'm becoming a different person.

I feel like in life we are all given a box of gifts at birth that are shiny and new... like humor, empathy, athletics, looks, brains, etc. We open them up and experience the joy and pain of living. Towards the latter half when the box seems mostly empty, you get near the bottom and notice a few more pretty special gifts wrapped in elaborate paper - some tied with  darkly colored ribbons and fantastic designs.

Ahh, what could this be, you wonder, while opening one. Inside you find a gameboard and a pair of dice. Rolling them, they land on 5 and 6. Not snake eyes, but not a lucky 7 either. Wait! the 5 lands on five stages of grief and the six lands on parkinson's. What kind of game is this? And how do you even win?

I thought I knew what courage was, but I'm definitely getting a personal lesson in it right now.

That's where I am this morning... I will find a way or make one.

You are a gifted writer.

 

A guy who won a Tony award this year said..your biggest obstacle now may become your purpose...or something like that. 

 

Who knows? You may become a big advocate for PD using your gift! 

 

LAD

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On 6/20/2018 at 8:37 PM, Superdecooper said:

I’m really not sure what to make of these PD meds. I honestly feel like I’m in my early 40s when I take this Rytary. It’s like stiffness and clunky movements evaporate and I feel like I can glide from place to place without a care. It’s the opposite of how I felt last week. 

It really reminds me of the athletic grace that I had in abundance when I took karate. That grace sort of slipped away in my early 40s. I do remember waking up saying something has changed around 2004. About 5 years later I started having the very first vivid dreams and kicking in my sleep, and sleep apnea problems, and low T. 

I'm a little late chiming in here, but I just received a diagnosis, too, after a medication trial. I know just what you mean about this. I hadn't realized it before, but my body had become sort of disconnected from itself. It was like there was an invisible line down the center of my body: the left side was the body I identified as myself, while the right side had become sort of not-myself. I know this sounds weird. But when I started the meds I actually had the experience of feeling my body become reintegrated. It was truly miraculous.

On the down side: I feel like I've had a sneak preview of the future. It's going to be difficult.

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Hi everyone.

I was on vacation at the beach last week, and it was so very nice. I took the chance to reflect on nature's beauty and get closer to my wife.

thanks for the encouragement papa57. I try not to dwell on the what ifs, but living in the present sure can be hard when the future has changed so dramatically. I thought I knew where I was going, now I'm not so sure. I've always been a planner so I may have to revise that habit. I will find a way to keep looking forward with hope.

Thanks for the compliment LAD - I'm a writer like my father before me. Yes, it's entirely possible I could use my talent in some way to advocate for Parkinson's. I haven't considered it, but will now. I'm becoming an expert on this disease as I try to figure out how to live in this new world.

and cereus, it's interesting that you describe your body as feeling an invisible line. For me, it was more like having dead zones that were rebelling against my desire. Sinemet is an eye opening experience for me, even though I really haven't worked out when to take the meds consistently yet.

The future's not written - and I don't want to spend too much energy worrying when today has so many opportunities. You may consider it a sneak preview, but those scenes may not actually show up in the movie. I'm finding that if you look at life through the mirror of PD, problems may appear closer.

 

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2 minutes ago, Superdecooper said:

The future's not written - and I don't want to spend too much energy worrying when today has so many opportunities. You may consider it a sneak preview, but those scenes may not actually show up in the movie. I'm finding that if you look at life through the mirror of PD, problems may appear closer.

 

Excellent point!

It is not yet the final release. Future scenes are subject to editing and possibly even deletion!

Last week I read an interview that really helped change my perspective. The person being interviewed had accomplished something she had previously thought was impossible. She said that to counteract her doubts, she used the mantra 

But, what if I can?

It seems simple to the point of being obvious, but to me it was a powerful reminder at just the right time.

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