Parkinson's Disease & Medications - If Your Doctor Isn't Listening

Parkinson's Disease & Medications. In this worse case scenario, based on a comment from another video, and there have been many other comments like it, what would you do if your doctor won't listen to what you are saying or openly discuss with you of your treatment options? If you can't change doctors or want to give them another chance to help you, how would you advocate for yourself?
theconversation.com/amp/why-p...

[@Tns85]

The thing is a lot of doctors that are specialists have egos they don't like patients telling them what they should have it hurts their ego. So unfortunately patients go either undiagnosed or misdiagnosed or not giving them the correct medication. I have had this happen to me. I even had a neurologist tol😢d me "you didn't go to school for 10 years to know what you're talkin about I did". It was horrible

[@ParkinsonsWigglesProject]

Sorry for such a terrible experience. Like I said in one of my other comments to you...I think young women especially can find it hard but know that it might take some extra time but there absolutely great doctors out there who will listen and help you!! 🥰 It requires patience and persistence, you'll get there!

[@JeremyMcdonald]

This is great advice, Jennifer! Keeping the lines of communication open with your doctor or MDS is SO IMPORTANT! And it is so true that medication can have drastically different results for different people. Keep up the amazing work! Very informative, too👍

[@ParkinsonsWigglesProject]

Thank you Jeremy!! I would never want to be in this situation so...I went through something awful during diagnosis but have been lucky since :)

[@LifewithParkinsons]

Great episode Jennifer. I have never had a really crisp result from the C/L which has always surprised the neurologists. On the other hand dopamine agonists work really well for me.

[@ParkinsonsWigglesProject]

Thank you David!! It's a complicated disease that can get more complicated with trying to find what works. But you found what works for you which shows it can be done!!

[@topper6738]

CD/LD worked only slightly for me the first year. Now, 5 years in, I'm taking two 25/100 four times a day (recently switched to Rytary) and am doing OK. I wouldn't be able to work if not for the meds. I'm blessed to have a good Movement Disorder Specialist that kept upping the dose. It is what worked for me.

[@ParkinsonsWigglesProject]

Though I don't know for sure, I feel like I couldn't do anything without the meds. Thankful for my MDS and for comments like yours. We have so much in common yet the way we take and respond to treatment subtly different. I take 1 25-100 every two hours, except when sleeping :) Thank you!!

[@francesluttermoser234]

At this point we have been exposed to many neurologists. I have not met one that behaved like a Dr. . We are in an area where there are no specialists in Parkinson’s.

[@ParkinsonsWigglesProject]

The closest Movement Disorder Specialist to me is an hour and half. Mine does online visits as well which is great when I don't need a face to face.

[@francesluttermoser234]

@@ParkinsonsWigglesProject we have an appointment I made with a movement disorder specialist in Oct. the appointment is in April. They tried to make one for Feb but we are 70 + and live in Michigan. We don’t go out on ice. I’m trying to stay positive but it is hard with the experience we have had so far. We have a great GP and that helps so much. Thanks for listening.

[@ParkinsonsWigglesProject]

@@francesluttermoser234 It's great that you have a GP that you like!! Maybe this isn't the best analogy but think about how hard it can be find a great dentist. I also drive to SF to go to see my dentist, 3+hours roundtrip because I trust them, they listen, and are good. I am hopeful for your visit in April, there are great doctors out there, I do hope it goes good, as it should!!

[@ricksuvanto5009]

I agree 💯. If you can try and find a MDS that will work with you.

[@ParkinsonsWigglesProject]

Thank you Rick!!! I confirmed they are in the UK = NHS, and apparently it’s really difficult to request a new doctor. I spoke with Emma from Who Stole My Dopamine (who’s hilarious if you don’t know her writing I highly recommend) yesterday who also lives in the UK and she said in order to switch doctors you have to have had a really bad experience and it’s not easy. Sad to hear this because I have to say there are lots of reasons I’ve looked up to Canada, the UK, and other nationalized health care vs the for profit system we have here in the US. But at least I can easily switch or look for a doctor that will work with me. Is it easy for you to switch doctors?

[@davidhughes5998]

Happy New year, good advice. Thanks for your efforts.

[@ParkinsonsWigglesProject]

Happy New Year David!! Thank you :)

[@SDWP]

Excellent points!

[@ParkinsonsWigglesProject]

Thank you!! :)

[@user-qy2fl8og6x]

I'm allergic or very sensitive to the fillers and flow agents and also have chronic inflammation. Just got the blanket diagnoses of FND .They said for now .Not enough medical staff here to be treated so I have a 6 month wait just to make an appt. It's insane ❤

[@ParkinsonsWigglesProject]

So sorry to hear! 6 months is insane!!

[@gerardmaynes6685]

Thank you for your insightful presentation. I could listen to you all day. Best wishes.

[@ParkinsonsWigglesProject]

Thank you! 🤗

[@Greekpighunter]

Keto diet and daily exercise plus meditation with prayer…..no drugs. Look at deep brain stimulation if you are a candidate

[@JohnMcCreery]

Good advice, well delivered. Keep up the good work.

[@ParkinsonsWigglesProject]

Thank you!! 🥰

[@artisartisart]

Thanks for your vids! Very inspiring! Take care!

[@ParkinsonsWigglesProject]

Thank you!! 🥰

[@brianemmons8960]

Good information!

[@ParkinsonsWigglesProject]

Thank you!! 🥰

[@Tns85]

I hate the idea of trying to go see another neurologist but this tremor I can't hide it anymore and the fact that I have one arm swing and not on the other and the fatigue and pain in my neck is horrible

[@ParkinsonsWigglesProject]

My first diagnosed my right away. I saw one neurologist, two movement disorder specialists, and one MS specialist before the diagnosis was made official. It's no fun but the way I saw it is that I needed to feel better and be able to move. I was ready to do what it took to get the answer.

[@mikefalch8304]

Great video. You provided lots of great information. Thank you for spending the time and energy!

[@ParkinsonsWigglesProject]

Thank you Mike! 🤗

[@ohblimey21]

You ought to do an episode on Dyskinesia?

[@ParkinsonsWigglesProject]

I feel like I've done one.....oh yeah, not in the title but I discuss. And you're right I should devote a whole video to it ♥ kzbin.info/www/bejne/d32QaWljmb93n5Ysi=HffL36-upmP8PHiX

[@user-or2je2qs2x]

I was recently diagnosed with PD, i am passed the denial phase, but i find myself looking for hope in research articles, have you or anyone in this community tried supplements that helped such as vit B complex , magnesium , vit D3 , NAC? ect...........

[@ParkinsonsWigglesProject]

Hello! Check out Seattle Integrative Medicine and the research of Dr. Laura Mischley, very interesting! A neurologist I saw suggested NAC and I never regularly took it. I do take COQ10 and magnesium is super helpful, I've heard repeatedly for sleep and constipation issues. But there are different kinds of Magnesium so you have to make sure you are using the right one. And as always talk with your doctor to make sure it's right for you 🥰

[@jerrym1070]

Thanks for your knowledge and wisdom . Happy New Year Seems like fighting the dr is common . If you mention you have been researching , their barriers go up . Going Fri 2 my 2nd appt , 2nd neurologist MDS . Wish me luck . He said on 11/14/22 that I didn't have PD . Ordered DATSCAN test ( negitive ) . But what do I have ? Was reading about RIGHT EYE VISION SYSTEM pre diagnosis of early PD symptoms , I read some people are misdiagnosed 3 times before being diagnosed . What a rough place to be , to have pains , symptoms , conditions . And to feel that the professional have given you the run around . These internal tremors have been going on for almost 3 years , not painful but none stop and takes a while to identify when happening . Anyone else experience them internally ?

[@ParkinsonsWigglesProject]

I was diagnosed with PD on my first visit with a neurologist. My asking for a second opinion sent me in the wrong direction (the MDS I saw for my second opinion said it was a stressed induced tremor) for the following six months but I eventually got back on course and also ruled out MS during this time...It's great that your neurologist ordered a DATSCAN and that you are seeing a MDS. Parkinson's is such a tricky disease and frustratingly diagnosis can be a challenge. I have faith that your Friday appt will be helpful, and will hopefully get you closer to finding out what is going on if it is not Parkinson's. I have an intention tremor, not a resting tremor, and haven't experienced internal tremors....though when stressed out my whole body shakes (like what happened in to me in the casino). Good luck to you!!

[@jerrym1070]

Thanks for sharing your diagnosis as well Jennifer . Mine I guess was backwards. Got diagnosed by 1st neurologist ( said was PD ) . Did MRI . Was told come back in for meds , when got there changed his mind about meds , said MRI was good , referred me to MDS ( and stated in my record that seen things had worsen ) . This 2nd dr has me feeling that I am back to square 1 before 1st dr and visit . Thanks for hearing me , it means so much to me . Without a few people I share with , I would go insane for sure . Hope your having a great day .

[@erichouck9487]

you can fire a doctor that won't listen, you are so right. It's up to you to take control of your health

[@ParkinsonsWigglesProject]

Thank you for your comment!! Yes we are in control of our health, a good doctor will be there to listen & guide us on this very complicated journey, & we should be good listeners as well 🥰

[@Psalms1918]

WATCHED VIDEO

[@Psalms1918]

YEAH

[@larrysimpson6087]

He might not have Parkinsons....

[@SirReginaldPennybottom]

I initially wanted to be on Levodopa and was worried about the side effects of agonists. My MDS talked me into Pramipexole and it's working very well. I still have MOST of my money. Just my 2¢...

[@ParkinsonsWigglesProject]

Thank you!! That you have a medication that works very well for you is what it's all about and great to hear!

[@rexeverything6249]

B1 therapy,,,

[@auroramatera7555]

Please share with me if B1 therapy works well with you.,,and why . Which brand and what is the dose. 100x2 day ❤