Alternative treatments - what is the consensus?

[Astra7]

What is the verdict on B6, mannitol, exercise and exenatide? Is anyones neuro recommending any of these? Mine just gives me meds….

[DEAT]

Same for mine

[Hidden]

regarding mannotol

cureparkinsons.org.uk/2022/...

scienceofparkinsons.com/202...

[Zella23]

My husbands Neuro definitely recommends exercise, he glanced at all the other additional things he tries and says if they help go with it!

[CRMACK1948]

We live in Scotland,and are having similar underwhelming help from our PD consultant.Earlier this year We decided to be more pro active.I asked for a prescription for melatonin,which was given,no questions asked,and my husbands sleep pattern improved with 4 mg dose plus magnesium nightly.We enrolled in a 10 week exercise course recommended by the Edinburgh branch of the Parkinson’s Society run by a neuro physiotherapist.Absolutely brilliant.She affirmed that now exercises are as,if not more,important than pills.Husbands posture,gait balance and co ordination all improved.Sadly in July he got covid really badly,the aftermath being he couldn’t get out of bed on his own and needed a zimmer but 3 months down the line we have built up the exercises to almost pre covid level,and improvements are noticeable.We have also invested inPEA supplement ,expensive,but some interesting positive scientific reviews made it look worth while.He has been taking it for 5 weeks,high dose,and his drooling,which was constant and profuse has calmed down to a controllable dribble.His constant wet cough has disappeared.PD affects everyone differently,what is right for one maybe won’t work for someone else,but I would definitely say exercises,specifically for PD are working far more positively than tablets seem to be.Best wishes with your journey,there’s so much we can do to help ourselves and still enjoy so much of life

[glenandgerry in reply to CRMACK1948]

This is so encouraging. Thank you for posting.

HWP has been taking umPEA for several months. The main reason is for pain but it doesn't seem to have helped with that but it has seemed to help with drooling.

I buy Melatonin from the USA as, for some reason, we cannot buy it here in the UK. It is so good for so many things but really fantastic for assisting with a good night's sleep.

I had Covid last week but hubby didn't seem to have any obvious symptoms. He did however have two rather nasty nosebleeds (which I have read subsequently may be a Covid symptom). I tested him yesterday in readiness for a hospital appointment today, and he was positive. Consequently the hospital appointment had to be cancelled but Covid symptoms are barely showing. I'm hoping it stays that way........wonder if umPEA has anything to do with that?! 😁

My next mission is to try and find a neuro physio - one who will preferably come to the house as I am still working so running him around to all these appointments is time consuming.

That is brilliant though that you can take your hubby to the neuro physio 10 week course run by the Edinburgh branch of the Parkinson’s society. Wish there was something like that down south!

[CRMACK1948 in reply to glenandgerry]

Hi Glenndgerry,the neuro physiotherapist who took our course is called Sasha Baggaley.Google her,she has lots of exercises on utube,and I think does classes that you can zoom into.How much PEA did your husband take at the start? The company that makes the only natural PEA supplement who are based in the Netherlands recommend 1200 mgs per day for the first 3 months,then600 mg per day after that.I get it from a company called Tiny Pioneer,( UK based) who get it from the Netherlands.Regarding melatonin,I phoned our Parkinson’s nurse and asked her for a prescription so we get it for free being old codgers.Don’t know if it would be the same in England.

[glenandgerry in reply to CRMACK1948]

Many thanks for the info. I purchased my umPEA powder from the same place Bolt gets his in the USA. My husband only takes 600mg a day. I would like him to take more but it's a struggle getting him to take anything as, when I'm at work, he forgets, then we just seem to run out of time in the day.

[CRMACK1948 in reply to glenandgerry]

we get the PEA in capsule form,2 capsules at breakfast ( 600mg) and two at tea time(600 mg)

[Smokeypurple in reply to glenandgerry]

Where in the UK are you - I've forgotten?

[glenandgerry in reply to Smokeypurple]

Hampshire

[AmmieM]

My neurologist only recommended exercise. He won’t recommend anything that isn’t FDA approved.

[Hidden]

I’m 65 and I was diagnosed in 2009 and if I remember nothing else from that day I will always remember those five words that the doctor said, “move it or lose it”, so I do as much of that as I can each and every day. I exercise every morning for at least an hour, whether it’s walking or using my sit down peddler that is very similar to the famous theracycle, but costs just a fraction of what the theracycle costs, which is a forced peddling machine. I believe that exercise along with other things I do have kept my symptoms at bay for all these years. The tremor I had at my dx is almost nonexistent now and I managed to decrease my meds as well going from 1 sinemet every 4 hours round the clock to 3 maybe 4 pills a day presently. I also have cared for my 4 grandchildren all these years, something else that I believe has made a huge difference in my well being. It hasn’t always been easy but I manage and now three of them are old enough to help me out when they come over. Up until about a year ago I didn’t really have any real issues aside from the usual pd annoyances, it’s only been recently but I’m having trouble with the gait freezing and I manage that with different techniques I’ve read about online. Some people think you shouldn’t look too much stuff up online about Parkinson’s, that you should just take your medication and do what the doctor says but I find that there’s a wealth of information out there on ways to cope with some of the difficulties we have and hearing what others with this disease do can also be quite valuable. Along with putting exercise first on my list, I adhere to a strict diet, lots of water, playing brain games, finding time to laugh even if it’s at yourself, I use a variety of supplements and such that have helped tremendously. You have to be proactive and be your own advocate with this disease because every Parkinson’s patient is different and you have to use every tool in your toolbox if you want to have a good quality of life, but I’d say exercise and keeping active and moving as much as you possibly can is key.

[Little_apple in reply to Hidden]

💕💕💕

[laglag in reply to Hidden]

Can you list the supplements you are taking? I'm also 65 and still getting around pretty good. 🥊

[Astra7]

Thanks for your reply.

I’m also having problems with freezing and have had to stop tennis (which I love) due to constant falling.

Havd you found anything that helps this?

[LeharLover62 in reply to Astra7]

it’s very tough to counter. We’ve tried lots of things, high dose thiamine helped a lot especially with the balance, and a really good PT who specializes in Parkinson’s. You may also want to check your meds to see if you need a dosage adjustment.

[LeharLover62]

Well hubbies neuro recommends the keto diet. He also does vitamin level testing and recommended B6, Folate and D due to deficiencies. He recently started encouraging the PS128 probiotic (or a similar regimin of pre and probiotics). I’m pretty sure he recommends NAC supplementation as well, but did not for us. He also tried Macuna for hubby, but that recently stopped working well.

He wasn’t that familiar with the high dose thiamine and mannitol we were using, but he supports it.

[glenandgerry in reply to LeharLover62]

Wow, your neuro sounds fantastic. You are very lucky. Whuch country are you in?

[Beanie57 in reply to glenandgerry]

Yes would love to know the name and where this Neurologist is based?

[kaypeeoh]

I tried sublingual thiamine for three months and never noticed any changes.