he does not take any parkinsons drugs. they made him feel very ill, hallucinate, lethargic and vomit. all he takes is cannabis.
he has been tremoring in both arms/hands for 2 years now & getting worse now, he is so tired and has at least 1 very bad day every week. looking for some help, something more. he shuffles is feet now and beginning to stoop alittle. His depression is getting worse. The nuerologist we saw didn't do much except push the drugs. He just wants some relief. feeling lost here. I am looking into a Movement Disorder Doctor to see what is possible. but gettin an appointment is a bear.
Thank you
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TravelBud
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Hi TravelBud:
Has he tried carbidopa/levodopa?
Did he start with a low dose (e.g., 50 mg of instantaneous release) (e.g., regular Sinemet or the generic equivalent)?
Did he increment it slowly (e.g., take the same dose for a week before incrementing)?
C/L and exercise will help him. Sounds like he's in denial. He doesn't have to take a lot of medicine just three a day probably will reduce a lot of his symptoms and make him feel a lot better. I've been C/L for many years and it's still helping me. During my on times I feel almost normal most of the time. My off. Are not too great but that's how your husband feels right now with not being on any medicine. Not everyone has side effects, but the side effects are usually better than disease itself,
By all means try the things suggested here but I have not heard of anything that convinces me that your husband will get the relief he craves, from them. He is following the natural progression of untreated PD.
There is evidence for some nonprescription interventions improving the underlying disease state, and may slow progression. My list of interventions that may help:
I'm not entirely disagreeing with you, but they could push exercise. Or they could maybe make a nice graphic with the entire range of things that could be tried and explain all the options.
When I saw my Neuro for my REMSBD he:
A: Told me I was doomed (he did tell me I had 10 good years left).
B: Told me it was my fault due to drinking.
C: Wrote a prescription for Clonozapam.
He could have told me to try Melatonin, which has worked perfectly (so far) to keep the REMSBD away.
But I do agree that doctors are actually in kind of a bind. If they don't treat according to the generally accepts standards of treatment they will be open to lawsuits. And it is not like the doctor has a cure in their back pocket anyway.
Yes, my friend they are in a bind. To be fair my wife’s neurologist did suggest exercise and unbelievably CoQ10 - because he uses it for migraine. 🙄
But they do have a limited toolkit and it is for the reason you suggest: …If they don't treat according to the generally accepts standards of treatment they will be open to lawsuits.
So let’s temper expectations and not blame them for ‘pushing drugs’ 🌺
Neurologists don't prescribe conventional meds to avoid lawsuits!
They prescribe conventional meds because they are the best treatments available, and there are no supplements that even come close to working as well as conventional meds (and I am being generous here).
And all of the neurologist I have seen have encouraged exercise, but the first step to being able to exercise, is being able to move well, and conventional meds allow PWP to do that .
Hi and welcome TravelBug, You will get a lot of support here. There are so many caring members.
park-bear has listed a number of protocols to try. He mentioned mannitol. It’s been a game changer for my husband. See my post by clicking on the icon on the left
of this message.
The infrared coronet has been very successful for some members. See Zelda23 posts…a wonderful story. We have a coronet and my husband has started using it.
There are two coronets made in Tasmania, Australia. A number of members have ordered them. The main one is from Wellred. I ordered ours from the Dorset Men’s Shed. They call theirs a Hat. It’s a copy of the Wellred one. It’s not as well made, Its a big difference in price. If you decide to get one and can afford it, get the Wellred one. They are both very easy to deal with.
Should you decide to order one from Wellred, ask Catherine if she can also send you a copy of the article that appeared in The Australian newspaper recently. Our neurologist said that the people behind the research are well qualified and respected. He also said that some of his patients have tried it and had good results. We ordered Wellred’s Therapad recently. I’ve used it on a couple of sore spots. I like it. Also using it on my gut to help digestion.
When I ordered the Hat, I emailed Mervyn at mrc777@bigpond.com.
Hello TravelBud ~ my husband was just diagnosed 12/2020. We have seen LOTS of improvements since his dx, and yes, I agree, not much help from neuro. However, there is so much information and helpful people on this forum. You have to do your own research and figure out what works for your husband. Whatever you do, do not give up!!!
Thank you and yes I have been doing as much research as my brain will allow. So much out there. Started the B1 this week 500 mg. And the “Now brand macuna I will start when it arrives. I wonder how much on that one to start him on and if I should increase slowly?
I agree, the researching can get overwhelming. There is a lot of information about Mucuna on this forum ~ dosing, brands, etc. we aren’t taking Mucuna at this time. It is on my list to see if we can switch to that and eliminate the C/L. I’m not sure we can do that. But we’ll see.
I have been trying to figure out the B1 dosing since February and I think we have finally found the right dosage so hang in there and don’t give up.
Yes, the exercise is a must!! We walk and ride bikes. I suggested to my husband that for winter we should get 2 exercise bikes so we can race! He didn’t go for that idea!!
I hope this helps. Have a fabulous day and God bless!!
I felt the same way on IR C/L. I switched to Rytary. I take it with no side effects, except if l have a long day at work and I take it every four hours, by the end of the day I’m writhing.
I would start with 3 levodopa pills/day- standard start-up dose. Then I would start an exercise program walking every day and build up to what is comfortable. also weight listing daily . I would cut out most carbs/sugars from the diet . I have a list of supplements I can recommend if interested- they seem to help - just get in touch with me.. But 6 years into it No surprise he is having some symptoms with no meds..
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