what to do?

[MomoP]

a few months ago, I finally decided to try meditation, specifically C/L. I had no reaction to instant release, so we tried titrating up on CR C/L 25/100. I got up to 2 pills three times a day. I was on this dose 3-4 weeks and I happened to have a neurologist appointment. They said there’s no reason to keep taking medication if it doesn’t help you. I’ve been medication free since March. I’m ready to try another medication so I reached out to the Dr. I explined that hopefully there is something to try that won’t make me drowsy or hallucinate. And I asked if trying a stronger dose of C/L should be tried. She didn’t address that

Her reply was “Amantadine versus a dopamine agonist such as Mirapex or Neupro patch does she have a preference. ”

I have no clue. I know you can’t tell me what to do, but I’m open to opinions or experiences

[Bolt_Upright]

Maybe you should try a different neurologist?

[Isthistheone]

Hi MomoP. Remember I'm not a doctor. I will not offer advice, but I will give you my opinion/thoughts. Need some more information. How old are you and when were you diagnosed? Also is your doctor a Movement Disorders Specialist. These are doctors who have added sp ecialized training in PD. I was diagnosed in 2010. Today my opinion is to stay off any medications until you need them. Everyone is different please remember that, what works best for you, may not give me or the next 10 people anything. I'm always in favor of finding a doctor you feel comfortable with. The docs that don' t take the time to answer questions or explain what is happening have a good chance of being off the team. It may take a year or more to find the right recipe that works for you. You will understand this disease better as you get further down the road.. It's important to know what's around the bend. I guarantee it won't rain on your parade that often if you know what's coming. Get intoa support group. Everyone is here to help. We are all in this together. There will be times when you need to lean on someone for support and you will be there when you will support others. PWP (People With Parkinson's) are much stronger than they know. Good luck and be safe.

[MomoP in reply to Isthistheone]

Thank you for your reply! I’m 62, officially diagnosed in May 2020. My neurologist is a movement disorder dr. I started having trouble in the Fall of 2019, which I now know was foot drop ( I didn’t know then, I feel like so many drs dropped the ball not recognizing it for what it was), until a neurosurgeon did an EMG in Oct 2022, whish lead to Peroneal nerve and ulnar nerve decompression surgery in Nov 2022. I just had an EMG a week ago that shows “0” signal . I guess 3 years undiagnosed caused serious damage. My balance and mobility is severely affected. No tremors, my sense of smell is fine, no cognitive issues. I’ve tried mucuna and mannitol, with no response My toes started clawing months ago, which I know PD can cause. The podiatrist says it’s from a muscle imbalances from the Peroneal nerve injury. I have no dorsiflexion whatsoever. I can’t turn over in bed. I was hoping but doubtful medication would help my mobility. It may be more from the other issues? I just want some normalcy and my quality of life back.I apologize this was so long. I wanted to give you more information.

[Gallowglass in reply to MomoP]

Sounds like me! But I have reduced clawing while the C/L on ON. It takes and hour after med to detect improvements and effects wear off in 2 hours. I take two tabs every 4 hours. I wrap my toes with 8 “ strips of Ace bandage which facilitates walking and sleeping. Also some relief from full doses of magnesium, melatonin, and Aleve at night. And some relief from vibrating plate AM and PM ten minutes. Lots of relief from Parkinson’s stretch exercises and stationary biking.

[MomoP in reply to Gallowglass]

Thank you for your comment. I had flexor tendon surgery in July23( boy, have I been on a journey 😩) The clawing was agonizing. Well, it wasn’t the miraculous cure I’ve read it can be. I bought spacers and sports tape and anything remotely I thought would work. Do you wrap each individual toe, without cutting off circulation.

[Gigi_12 in reply to MomoP]

Has your Dr mentioned botox. I have dystonia in my neck and right foot which made my toes curl and move. I had a lot of foot pain and thought it was all arthritis. My Dr recognized what it was and gives me a shot in the sole of my foot and calves. It made a huge difference in my walking. It hasn't worked as well on my neck.

[MomoP in reply to Gigi_12]

No, I had differing opinions. The podiatrist said it was from the nerve compression causing muscle weakness and imbalances, which caused ankle instability, walking on the outside of my foot and tendon tightness. I may certainly try that. I need better mobility. I’m waiting on an AFO to be made

[Gallowglass in reply to MomoP]

I’ve tried many ways and materials for wrapping toes. You’re right. Don’t want to cut off circulation. Ace bandages are nice and stretchy. Washable. Sometimes I weave them between the first few toes. I have shoes with a big wide toe box so there is less irritation and more space. I use a thicker material for bedtime when I don’t need shoes. Oh, also a foot rub with good quality CBD cream is helpful at bed time. 😀

[MomoP in reply to Gallowglass]

Thank you! Isn’t it amazing the things we’l try. I’ve tried spacers, yoga toes, sports tape. I actually bought moleskin to try but haven’t yet. I use Voltaren and a sock at bedtime. I recently received a custom orthodic ( UCBL) to try to hold my foot in a more normal position instead of rolling to the outside. I bought a double depth shoe with a wide toe box online from Dr. Comfort. I will try an ace bandage next. Thanks for the advice!

[MomoP]

I forgot to add, I like my Dr., but I was disappointed that she asked what my preference was. Of course, I can try to research, and I have started to. But I’d rather her suggest something and why. As a side note, just my quick research suggested Amantadine shouldn’t be taken with malaria drugs. Funny that was one of my choices considering I take Hydroxychloraquin. Maybe you’re right and I should prolong starting medication?

[park_bear in reply to MomoP]

Never any need to apologize for a detailed description of your issues. That is important information for those who might wish to help.

Nothing wrong with a doctor who offers you a choice of medication.

Since C/L did not help It makes sense to try a dopamine agonist. They can have adverse effects but some people do well on them.

From my experience amantadine does not do much.

From your description it does seem like you have Parkinson's symptoms, but on the other hand non-responsiveness to C/L does raise a question.

[MomoP in reply to park_bear]

Thank you for replying. I don’t post much but I read every day. I value your input and knowledge “on the other hand non-responsiveness to C/L does raise a question.” Iknow. I’m concerned about that too. That concerns me too. Tonight , I came across an old video of a PD speaker named Dr. Stanley Fahn debunking some myths about PD and treatments. He said some Drs mistakenly consider you unresponsive with 300-600 Levodopa. He said many people need more. I think before I try something new, I will reach out to my Dr and request another trial of C/L titrating a little higher this time before considering it ineffective?

[park_bear in reply to MomoP]

Thanks for kind words!

I have also heard that said regarding levodopa. I don't see any harm in giving it a try.

[Shlim in reply to MomoP]

My husband did not respond immediately to C/L and docs quickly decided that he didn't have Parkinson's because he was too young, it is not typically hereditary and his response to C/L was weak. Next, were four years of hell and treatment for narcolepsy, depression, anxiety, etc. He missed most of the honey moon stage for C/L because of the wrong diagnosis. I don't remember his initial dose...more and longer to totally rule it out would be my advice.

[MomoP in reply to Shlim]

Thank you so much! That’s definitely encouraging me to try again. No need to suffer if I don’t have to and I will definitely know for sure

[Gallowglass in reply to MomoP]

Also when you took the CL did you avoid eating two hours before and one hour after? Food can reduce CL absorption.

[MomoP in reply to Gallowglass]

Yes, I was very careful when and what I ate

[JohnPepper]

There is no medication on the market that can genuinely reverse PD!

There is only one way to reveerse PDand that is to get off your butt and start doing FAST WALKING!

It woks and it makes youi fitter and everythinf is in its favour!

Only ONE PERSON CAN STAND BETWEEN YOU AND GOOD HEALTH AND THAT IS YOU!

[Isthistheone in reply to JohnPepper]

Hi John how's it going?? I know you are still fast walking. I'm thinking I should get back on track. John I'm entering my 20th year on my Parkinson's and I have some very challenging gait and balance issues. John I really want to go out with a bang. Pretty sure my fast walking days are over. Appreciate your thoughts/suggestions. Thanks.

[JohnPepper in reply to Isthistheone]

Hi! Don't give up. Your problem is that you don't concentrate on your walking, while you are walking. You must concentrate on each step and push as hard aas yo can!

Please don't stop!

kind tregards

John

[JeanieBeanie]

I hear the Neupro patch is good. Start off on a low dose and work up as required. The patches apparently are a more gentle medication. Just be careful of compulsive behaviour but I understand this is less of a problem with the patches.

[MomoP in reply to JeanieBeanie]

Thank you for taking the time to reply

[Doohat]

It seems odd that you haven't experienced loss of smell yet. That's usually one of the earliest symptoms along with constipation and arm not swinging. Have you had a brain MRI to rule out multiple sclerosis? That can also cause foot drop and balance issues. Are you experiencing any slowness of movement (bradykinesia)? That's another very common PD symptom. If you're not experiencing that yet, you probably don't have Parkinson's.

[MomoP in reply to Doohat]

Thank you! I had a brain scan in Dec 2020 ( normal), and again in June 2023 ( again normal, no strokes, vascular injuries)i have slowness of movement. When watching videos of the types of gaits, it is definitely not a Parkinsonian gait. I walk with a mostly neuropathic gait. I’m beginning to slur my words some. I’m glad they ruled out a stroke ( everything is left sided). I had a DAT scan in Jan 22 that reads

“1. Abnormal DAT Scan, with decreased uptake throughout the right caudate nucleus and bilateral putamen. 2. The results of this study do support a diagnosis of a Parkinsonian Syndrome”

Who would ever wish for PD? I’m beginning to considering the alternatives

[MacJacMaconGA]

Please read Daphne Brian’s book on Parkinsons and the B1 therapy. I would start this as soon as possible. It's helping a lot of people especially those who are in the early stages of PD. It's B1 thiamin, magnesium and a complex - the book explains the types and doses. Some other things that helped my mom are mannitol and natural l-dopa mucuna pruriens. Other supplements I would add are lions mane, ginko and Astaxanthin. Support groups are great. Exercise and diet are also really important.

[MomoP in reply to MacJacMaconGA]

Thank you!

[MomoP in reply to MacJacMaconGA]

I have but will read it again

[M-o-ggy in reply to MomoP]

Hi there. The book does not reflect B1 therapy. Better to search for B1 on this site

[qazwsx11]

When C/L is the remedy it works very well and in very noticeable ways. It’s also a component of the Parkinson’s diagnosis vs other movement disorders. Seems like you need proper diagnosis and your doctor is just shooting in the dark, which is quite common.

as other people suggested depending on your symptoms and your context try to find a second option with a more established PD neurologist. Get physical therapy to get moving or find functional neurologist.

[MomoP in reply to qazwsx11]

Thank you for your insight. In the beginning I was wishing I didn’t have PD, now I’m hoping it’s not atypical. I will search for a functional neurologist in my area. My Dr is an Asst Professor at a Large University teaching hospital. Appointments are getting stretched out further and further now ( May 23-Feb24). I get in touch if needed though the portal.

[mk2002wi]

Your appointment sounds similar in some ways as my very recent experience. I will be firing my current neurologist, as he seems clueless beyond what they taught him in school. There are good doctors and there are bad ones Too bad we get stuck paying huge fees when dealing with a poor doctor.

[MomoP in reply to mk2002wi]

I reached out to my neurologist through the portal requesting to retrial C/L going higher in strength for a longer period of time. I owe it to myself to know if I truly am a non- responder. I hope I respond. I realize different medications work differently for everyone but C/L seems to be the gold standard for PD. Until I know 100%, I dread the alternatives