So my husband has just noticed this week, his left foot has started to tremor. He has so far only had right side hand and arm tremor with severe stiffness and dystonia in right foot when he has too much levadopa. This is very distressing that his left foot is now misbehaving, does this just mean he is progressing rapidly? We feel this year esp his symptoms are bonkers. I'm not sure how to approach this on top of everything else. We still do 99% ldopa sometimes throw in a half madopar, he's on b1 and a myriad of supplements. Diagnosed Dec 2017. We do exercise and he still works, but that is getting harder and harder which only adds to the stress. It's a vicious cycle! I think we are gonna try hypnosis next maybe just to help him learn to deal with anxiety. Anyway, has anyone else experienced tremor on both sides? Do you just up your meds to help it? Thanks for listening.
Cheers Mel
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Seven years post diagnosis I have the good fortune to be about the same as I was at diagnosis. I attribute my good fortune to thiamine, cinnamon, exercise, and Qigong. I do have occasional tremor of the hand on my stronger side.
My list of interventions that may help reduce progression:
I do take it and it definitely improves my quality of life. C/L is strictly for symptom relief which is why it is not on my list above. That said, symptom relief is essential and C/L does the job.
Thank you PB. He does the cinnamon and mannitol plus B1, but he still seems to get symptoms he's never had before. It's always a mixed bag with him sadly. I often wonder, if he wasn't doing all these things if he'd be worse, but I guess I'll ever know. I just keep making sure he does them. I bought some ambroxol, but I still haven't gotten my head around the dosing protocol yet. Thank you again for all your help.Cheers Mel
PD is a progressive condition. Different people have different inherent progression rates (I.e progression rates absent any attempt at disease modification).
He is probably undermedicated for someone dx 4 years. Your gut will cook off most of the 99% ldopa.
I disagree with your contention that there is an inherent progression rate. Two years post diagnosis I was up to 600 milligrams of levodopa daily, in the form of C/L, from an initial starting point of 200 milligrams. Moreover it was not giving me as much relief as I needed to be comfortable in my body. Fast bad progression. Now, seven years post diagnosis, after various interventions I am back to 200 to 250 milligrams of levodopa daily and feeling much better than when I was taking 600 milligrams.
Hi kevo, Yes I know its progressive, but I'm just not sure how progressive it's supposed to be? And doing all we can to slow it down. I'm just curious if anyone else has developed tremor on both sides after a few years battling this nightmare. And is the only fix more drugs, which just makes things worse for him, ie severe foot dystonia. Anyway, we are all doing it in our own way and I can only hope we are all able to just keep moving in a positive direction. Thank you for your help. Have a great day.Cheers Mel
I understand. Do not take more meds without talking to his neurologist first. Just be very careful. A lot of us experiment but we talk amongst us. Taking too much of something or the wrong combination can have bad effects. Stress is a big thing to try and stay away from.
Hi Laglag well we aren't really doing a rx regime. Our neurologist is annoyed, but we continue to use a mucuna protocol. We sometimes use a half madopar, but my husband says the mucuna seems to work better. I really think stress and anxiety are his major contributors to his conditions progression. This is why I'm seriously considering hypnotherapy for him just so he can learn to calm his mind. He tries to meditate, but he works ft and just doesn't have enough time to dedicate to meditation daily. Thank you for your advice and yes keep up the good fight!Cheers Mel
Bydureon (a.k.a., Exenatide), a repurposed Type 2 Diabetes drug is now in third-stage trials (200 people for 2 years) in UK for stopping Parkinson’s in its tracks — results expected 2024. Testing — mice, open label, double blind — has been going on since 2010 and it has been positive every time.
According to a very sensitive test, Homeostasis Model Assessment for Insulin Resistance (HOMA-IR), 2/3 of Parkinson’s patients are supposed to be insulin resistant. IR may be treated with Bydureon (Exanatide). Just an angle that might get us one step closer to getting Bydureon.
My husband is more than 6 years dx and after 5 years and similar symptoms as your husband, we changed Neuro and he added in Rasagaline as well as continuing with a lower dose of Madopar and Amantadine. He takes B1, cinnamon a few other supplements and uses twice a day a red light hat from Australia.
He has cut down on Madopar still walks every day, doesn’t have the awful dystonia he used to have. Still gets stiffness and other issues but at the moment they are more manageable. He does have tremor but it comes and goes.
Maybe the Neuro could suggest something else to take with the Mucuna such as Rasagaline, it helps by stopping the dopamine being broken down so quickly I think.
Thank you, he sees the nuero at the end of the month, so we will try to figure something out hopefully. The nuero kinda just tolerates us, since we don't do all his advice. He prescribed my husband azilect as well but we were too concerned to try it. I guess we are just in denial still. My husband and yours sounds very similar indeed. He does the same supplements and red light. The foot dystonia is his worse symptom when it comes on. He just lives in fear of it because it is so unbearable when it does occur. Now with tremor on his other foot, he's totally spooked! Thank you again for your comments.Cheers Mel
I like your handle, PD does suck... I am 14+ years in and started tremors on both sides after about 8 or 9 I believe. I also developed that lovely left foot dystonia in my toes and tremors in both feet which is very uncomfortable.
I take mucho c/l + mucuna, 4mg Ropinirole (dopamine agonist) & Amantadine 100mg for dyskinesia.
Your husband is experiencing progression of PD and is similar to my progression. I still play a lot of basketball as long as my meds work but I am more uncomfortable over the past two and a half years when my progression sped up.
Picture below of wooden roller for feet helps with the t o e dystonia.
Abacus shaped wooden foot roller helps with t o e dystonia. 11"x 7"
Hi, Yes PD does suck, it was all I could think about when my husband was first diagnosed. I still stand by my handle, cuz this is neverending sadly. Thank you for the foot massager idea. When his foot is hurting he uses magnesium gel or ketoprofen cream which he loves. It's a topical pain cream, that he swears by. Doesn't stop the twisting, but helps with the severe pain he gets from it. I hope you continue to find ways to ease your symptoms as well and thank you again for sharing. Cheers Mel
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