Jump to content
helplinedonate
Superdecooper

Welcome to the club

Recommended Posts

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

Share this post


Link to post
Share on other sites

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! 

 

  • Like 1

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites
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

Share this post


Link to post
Share on other sites
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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

 

Share this post


Link to post
Share on other sites

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

  • Like 1

Share this post


Link to post
Share on other sites

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

  • Like 1

Share this post


Link to post
Share on other sites
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.  

Share this post


Link to post
Share on other sites

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

  • Like 1

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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. 

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites
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. 

 

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×