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jrfordy55

3rd stage PD

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I was diagnosed with young onset PD at age 40. I am now 62, and have been on every medication for PD. Currently,  I take 6 - 200mg of stalevo, and 3 -  25-250 sinemet and 1 -  1mg azilect every day. I was wearing off on just the stalevo 200mg every 4 hours. It was gone after just 2 hours. So I now take 1/2 of 25-250 sinemet in between doses of stalevo, or 6 x daily. This has helped tremendously, I am staying level pretty much all day. I try not to eat any protein and because I take meds every 2 hours around the clock, I eat very little at any time. This helps it get to brain faster. My total intake of levodopa daily is 1,950mg. I am having DBS surgery in October. Hopefully, I will be able to take less meds. Is anyone out there taking as much levodopa? I could not take the 2-21/2hrs of hard tremor, unable to walk, sweating, unable to breath, every 4 hours around the clock. But adding the 1/2 of 25-250 sinemet in between the stalevo has really helped. I don't know how long it will last, but at least I can have a sort of normal day. Sometimes I am so very tired of all that goes with having PD. The DBS will be a win win for me at this time. Thanks, Chris

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Hi, Chris. I was taking Sinemet every 2.5 hours. Last November I received the Duopa pump. It delivers carb/levo in a gel form directly into my small intestine for 16 hours every day. I don't qualify for DBS because I have trouble clotting and they don't want to risk a brain bleed. I've been pleased that I no longer have to wait for meds to go through my stomach.

 

Good luck with your DBS.

 

Dianne

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Hi Chris

 

Welcome to the forum. Thank you for starting this thead.

 

I take 50/200 CR CL 5x a day. I take them over a 24 hour span and I believe I get longer time "on"..and awake clear headed. I take no other PD drug.

 

When did you start Stalevo?.....at what doseage of meds, before you added. Because I am getting "break throughs", MDS will likely add more meds. What are your thoughts about which added rx helped you...which med would you recommend to augment C/L(carba dopa/l dopa) ?

 

Did you noticed there is a section on the forum for DBS PWP ? I have met two PWP who are very happy with the results. What town will you have your surgery?

 

I hope you plan to post often as we value your input. May I suggest you build your signature line to state your history and medication.

 

Thanks again for starting this thread....

 

NN

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If you don't mind my asking, could you give a brief history of your progression?  We all progress differently, but I'm curious about your path from Dx to now.

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I am progressing very fast into stage 4. The meds are harming me now. I can tell I am failing fast. I can't walk, my legs

won't move, I crawl on the floor. My body tremors are violent. I sweat and my breathing is labored. I know I am getting close

and I am OK with that. There is no cure. My heart is heavy. Chris

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Chris

 

I am grateful you take time & effort to reply.

 

You say meds r failing...you say sinemit ..or carbo dopa l dopa ...was the last drug added and it helps you.

 

This is the main question we all wonder... Is Sinemet helpful or harmful? Should we take it later than sooner as some docs advocate.

 

My husband & I take only sinemet and it works great for us. (69 & 71 yrs old). Answer only when you feel ok.

 

You are my hero. God bless you and prayers for your DBS surgery. It has been the answer for many people.

 

NN

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I am progressing very fast into stage 4. The meds are harming me now. I can tell I am failing fast. I can't walk, my legs

won't move, I crawl on the floor. My body tremors are violent. I sweat and my breathing is labored. I know I am getting close

and I am OK with that. There is no cure. My heart is heavy. Chris

I'm sorry for the heavy heart Chris.  We live in a fallen world, so that's why things suck at times.  I know God gives us hope for something better in the future.  He promises our bodies will be free from disease and we will no longer be sad.  While I enjoy my life here on earth (sometimes not so much), I know this is only a temp job, and the real prize awaits me.  If I can give you some hope, it is that Jesus Christ is King and He keeps His promises!  I pray this helps!

 

God bless you all!

 

Steve

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Chris;

If my memory is correct, my DH was taking around 1600-1800mgs of L-Dopa per day prior to his DBS surgery. Today, a couple years after? on a quiet day he takes 3 25/100 of C/L ER, and on a more active or stressful day he may add 1 or 2 of the 25/100 IR C/L as needed per his MDS. Of course that's plus his Amantadine (100mgs) 4 times a day....  For those that might want to know, his current DBS settings are 3.7v right body and 3.1v left body.....

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