#99: Skeptical about taking Parkinson's medication?

[@LindseyK-i7r]

You guys have been such a great source of information! I am a 36f just diagnosed a couple weeks ago. I’m on carbidopa levodopa 3 times a day and it’s been a huge difference on how I feel- been having issues on it not lasting the whole day so we are working on possibly going to 4 a day but I honestly didn’t even realize how bad I was until I took the meds and felt more “normal”. Thanks again for doing these videos it’s so nice to not feel alone on this journey 😊

[@gavinmogan9467]

Good topic! At some point, we will likely deal with severe off periods. I feel like the severity is due to my addiction to the medication. Like withdrawal symptoms. Perhaps starting later after diagnosis will extend the addiction severity further into the future. We must make allowance for so much they don’t yet know.

[@xjet]

Four years since diagnosis and no regular medication being used here but that may change soon due to the dystonia I'm now getting in my hands and neck.

[@jnm.624]

Podcast #100 is next!! Congratulations and Thank you so much ❤

[@kathyrosecrans2738]

Great video! I’m 67 and was diagnosed with PD 9-22-23. My provider offered me the standard carbadopa levadopa medication option which I chose to decline for now. My tremors are exclusively during sleep and movement is fine as long as I avoid stress at this point. If/ when that changes, they’ll see me and we’ll figure out my next steps.

[@dep7361]

Movement Disorder Neurologist Dr. Patel is helping us along our PD journey.

[@lanam3348]

Dopamine dysregulation syndrome is an adverse side effect of CL for me. I take as little as possible now, which means more tremor and bradykinesia. Can’t work or drive anymore either. I’m early onset

[@carlaborland4643]

Great discussion. The insensitive doctor that initially diagnosed me suggested C/L. When I said I would like to hold off for awhile and see if through exercise I could wait a bit he looked at me as if I was crazy and said, "You'll be in a wheelchair in 5 years"! I was scared, I had just rec'd the diagnosis and needed to digest hearing, you have parkinson's disease. There is a very legitimate reason why meds scares me (long story) but I also only have one kidney and my fear is side effects of meds taking a toll on my liver and or kidney. I have since started on C/L and it's made a huge difference. My fear is the progress of the disease and more and more medication and again the side effects. I'm thankful for C/L but still fear when the time comes to add more medication and the possible side effects. Anyone else out there with one kidney, if so have you notices issues?

[@thesecretlifeofparkinsons]

I'll have to ask around and maybe do a segment on this one. Sorry your doctor is so insensitive. That sucks. Are there others in your area? I know MDS's are hard to come by, but that's just not ok.

[@carlaborland4643]

@@thesecretlifeofparkinsons Thank you so much! Yes, I found a MDS that is much easier to talk to and a little more sensitive and understanding.

[@sydneya5517]

The way it was explained to me by my neurologist was that the carbadopa levidopa is the gold standard of Parkinson’s meds but that eventually your symptoms will progress and the c/l will not keep up with the progression so she suggested I start with mirapex and azilect until my symptoms get worse. I started falling and breaking bones about 3 years in and my doctor suggested I start the c/l and I did. Now 6 years in and when my meds wear off, I basically don’t move or I move in slow motion and my neck and back pain come back immediately.

[@thesecretlifeofparkinsons]

Are you able to exercise? That is key as well. Even if it's in a chair.

[@susanedghill6597]

I was falling for several years before diagnosed. why so many surgeries before a suggestion of PD ?. There needs to be much more even with The MDS

[@susanedghill6597]

More education !!

[@theresagivens2019]

I was diagnosed with PD 1 year ago, tried cl, it made me so sick to my stomach, switched to Mirapex , much better. I don’t have tremors but I freeze up a lot. I’ve got OA too, so I’m very stiff anyway Gets depressing sometimes

[@thesecretlifeofparkinsons]

Sorry, but what's OA? Do you exercise?

[@AndrewButton-x1u]

Love this podcast. Thank you sooooo much. Diagnosed almost 2 yrs ago. Take C/L 300 mg 3x a day. My problem is FOG and falling. Is there anything else I can take for this? When I first was diagnosed the Dr prescribed 1.5 the first week followed by .5 increase each week. Ended up with 3 pills (300mg) 3 times a day. Is there a max of C/L per day dosage? I have found that if I add 2 pills at 4:30-5:30 am when I go to toilet so when I finally get up at 7:30-8 am and start my 3x day dosage. It seems to help me with the get up and dressed, etc.

[@thesecretlifeofparkinsons]

Thanks for watching! Since we are not doctors, I can't give out any type of advice except to talk to you Neurologist. Again, not a physician, but from what I read/heard, I think the max of C/L per day dosage is based on every individual. It's a balance between meds helping your symptoms vs. side effects. I would consult with your doctor though.

[@jnm.624]

How do you measure the meds to the exercising to the parkinson's? How did you know you're sore from meds or parkinson's or exercising? I increased my exercising when I started my meds; both are tools to wellness. 🤷‍♀️ i don't know what I'm doing... how do you?

[@thesecretlifeofparkinsons]

This isn't a scientific answer because I'm not a scientist, but I look at it as, the meds are helping the symptoms right now, while the exercise might help the right now symptoms but mostly it's for the future. You are strengthening and retraining your muscles for the future and to slow the progression.

[@johndonaldson5126]

Not Skeptical. I do not yet have tremor. As soon as I do and the shaking interferes with my handling things I'll start on meds.

[@masudahmed6029]

Does anyone know if michael J fox had DBS?

[@tootalljones77]

I don't think so. I believe he had focused ultrasound?

[@tootalljones77]

(12:52) Im with you Jess! My meds/dosages change routinely. And, it stands to reason...depending on what is going on at the time usually determines the effectiveness of C/L (or dosage) There's been days when I took my morning dose of C/,L and felt fine for 8hrs. And other times felt that I needed a dose within 2hrs?? How often have we been told "everyone's different" Stem cells is the future of medicine- believe it. It's real

[@AFAblacksheepAFA]

No. DBS wasnt available back than for pd. He had a thaladolomi. They drilled holes in his Brain to surpress tremor.

[@masudahmed6029]

@@AFAblacksheepAFA he should do dbs would be beneficial for him.but don't think he wants to

[@AFAblacksheepAFA]

@@masudahmed6029 not sure if he would be a canditat after all his surgeries and overall health.

[@Zerobar78.]

Dhivy