Help needed

[ruff1]

My husband has been diagnosed nearly 12 years, on Asilect, Ropinerole and Stelevo, also 4g Thiamine. He runs, plays golf, goes to a physio led gym 4 x’s a week and Pilates once a week , paints and restores cars . He can be perfectly ok one minute then come to a stop . He has been better at night since taking Thiamine , turning over in bed , getting in and out of bed but he has to go to bed 7.30- 8pm as he just stops. He gets a bit frustrated that he cannot socialise in the evening.

Any suggestions how we can extend his day and stop the ‘down ‘ periods during the day? 😀

[Lionore]

For someone who has had the diagnosis for twelve years, it appears that your husband is doing very well!

I’m also reluctant to commit to many evening activities since I use up my energy exercising and doing household chores during the day. I’m also 71 so I would probably be slowing down a bit even without PD. Perhaps he can ease up some on exercise on a day when an evening out is scheduled or talk to his neurologist about additional meds that day.

[ruff1 in reply to Lionore]

He is doing really well, if he doesn’t do the exercise he is even worse he stiffens up and cannot move. He doesn’t have an appointment till July I tried to contact the PArkinsons nurse in March I’m still waiting for her to get back to me ☹️

[Hikoi]

He is doing well on his regime and so i would be loathe to mess with his meds. But to get more evening on time he may need to add an extra dose.

I presume he is on Requip xl. He could look at the timing of that. Although its a once a day med it lasts about 16 hours I think. some people divide the dose so they take some am and some pm to avoid the tappering off in the evening.

[ruff1 in reply to Hikoi]

Thank you yes he does take it in the morning, def something to think about dividing the dose in half 😀

[JohnPepper]

I am amazed at what he is doing, after twelve years on medication. As there is no medication that can slow down the progression of Pd and the side effects of medication are frightening, it may still not be too late for him to look at other forms of exercise, instead of what he is doing.

Look at my website - reverseparkinsons.net and contact me. I will try to help him at no cost to yourself or others.

I only started to get better after I stopped doing too much exercise and concentrated on doing fast walking, three times a week. That and many other changes of lifestyle have helped me to get off medication since 2002 and at the age of 83 I live a good life.

[Toogood in reply to JohnPepper]

Your doing very well John....I have been taking thiamin 2.5 to 3 per day...

Works on the constipation very well...I also walk most days for up to half hour each time....depends on the weather...I also take some other vitamins

Recommended by my naturopath...I have been gluten free for a couple of weeks as well....feeling ok most days....

[JohnPepper in reply to Toogood]

I strongly recommend that you walk fast no more than every second day. If you are really walking at your fastest, you probably will not be able to walk like that every day. I can't!

[Toogood in reply to JohnPepper]

I walk fast on the way,,but slow a little on way back...but not every day.....thanks for your reply...

[Toogood in reply to JohnPepper]

I also have tremors in arms...legs that I would be happy to get rid of...like

Most of us I believe....

[JohnPepper in reply to Toogood]

The more fit you become I sincerely believe that the tremors become less pronounced.

[Toogood in reply to JohnPepper]

I jolly well hope so...

[Hikoi in reply to JohnPepper]

John I really would like to know what these frightening side effects of meds are.. i have been on meds for 10 years now.

[Enidah in reply to Hikoi]

I'm always amazed how people seem to forget that this is a progressive disease. Obviously some people have a very different form of it if they can exercise without their meds and improve instead of progressively get worse. I wish it were so for all of us.

[JohnPepper]

I can only talk about the one side effect that is very common and that is dyskinesia. I have heard of many others but have not witnessed them first hand, which does not mean they don't exist.

Do you not think that dyskinesia is frightening? It certainly is debilitating and unsightly. It must be very difficult to live with.

[Hikoi in reply to JohnPepper]

No I dont believe those with dyskenesia generally describe it as frightening. There is a fear of it which is generated by comments from people who dont have it.

[JohnPepper in reply to Hikoi]

Don't have dyskinesia? Who wants it? I would rather walk as fast as I can every second day for the rest of my life than have dyskinesia.

The other side effect I can do without is the On/Off effect. That never happens to patients who don't take levodopa medication.

[Hikoi in reply to JohnPepper]

You have never experienced on/off. People with pd for a number of years who dont take meds must be permanently off or be very compromised. Not everyone gets dyskinesia. Your examples don’t justify frightening people by claiming the side effects are frightening.

[Despe in reply to Hikoi]

John is not the ONLY ONE talking about L/C horrible side effects. Look around you, search the net, look at MJF. Would you like more examples? Human bodies are not meant to digest poisonous meds. NATURE CURES!

[Hikoi in reply to Despe]

it is not nice to contemplate dyskenesia but i think for people with dyskenesia they are as concerned about how others talk about them as they are by the dyskinesia itself. Its not that they want or like having it but they see no choice. They could give up meds and taking up fast walking. Why dont they? I dont believe its because they havent read JP’s book.

I hope your husband finds relief of his symptoms in the years ahead

[JohnPepper in reply to Hikoi]

I knew a patient in my first support group who never took any Pd medication because he said it was a "Rip-off". He outlived everybody else in that group, other than my self.

He died an his nineties after having had Pd for a lot more than 10 years. He never had any 'Off' times. He became rather slow in his movements but he was a lot better off than those on Sinemet.

[Hidden in reply to JohnPepper]

Sometimes being "frightened" of something kicks your buns into action to do something about it before it happens. Like avoiding diabetes type 2 by changing your diet? Fear can be a positive thing.

[JohnPepper in reply to Hidden]

I could not agree more. Frightening symptoms caused by medication is difficult to manage. No doctor is going to recommend stopping the medication but we have to make our own decisions on that one.

If strongly recommend reducing levodopa medication, as a patient, and engaging in an energetic exercise program to overcome dyskinesia and other Pd symptoms, if that is at all possible.

[Hikoi in reply to Hidden]

Rideabike

Yes I agee fear can be a motivator. I guess thats also one way people use to sell their ideas.

And how are you getting on, are you any closer to finding out the cause of your symptoms, tried the levodopa challenge?

[Hidden in reply to Hikoi]

I am only closer in that I have been referred to a movement disorder specialist but don't have a date as yet.

Have ordered Zandopa from Amazon.ca. Was surprised they had it. In the meantime adding lots of the supplements spoken of here and elsewhere. When I get Sinemet I may try the combination with Zandopa as others have done.

This website had been very uplifting for me to read, suggestions from all are so appreciated as well as verifying symptoms so that I'm not left hanging. Everyone has so much knowledge to contribute. Amazing I found it!! Hikoi thanks for asking.

[Enidah in reply to JohnPepper]

What I have heard from many people including Michael j.fox is that dyskinesia is the lesser of two evils. In other words they would rather have dyskinesia then be off and completely non-functional. It's a fantasy to think that we're all the same and we can all get off our meds and walk fast. I don't know anybody with PD that does more exercise than me or hikes as far or as high but if my meds cut out on me mid hike I'm pretty helpless till they kick in again.

[ruff1 in reply to Enidah]

Ditto re exercise fir my husband John , really fit you wouldn’t know he had Parkinson’s when well medicated, but all of a sudden he stops , and can take ages to work again ☹️

[JohnPepper in reply to Enidah]

I have never said or thought that what I do will work for everybody. I know that it is difficult to ween ourselves off medication but for some it has been possible, even if it has not been possible so far to come right off.

[Hikoi in reply to Enidah]

I dont know about you Enidah but i get tired of hearing the story of fast walking and how we are not listened to by the medical profession.

Yet any personal experience of difficulties we might have with fast walking are not really listened to. They are largely brushed aside and not taken seriously.

[Enidah in reply to Hikoi]

Yes, I definitely get exasperated, which seems much easier to do these days. I mean really! People don't tend to get better when they actually have PD. Not that I've ever heard. Nor are they able to come off of all meds. I don't like the thought of people that are new to the site being misled. There's nothing black and white or simplistic about what we're dealing with. It's all in the grey. I will be the first to celebrate if I am proven wrong!

[movinngroovin]

Where can you buy 4 grams of Thiamine?

[ruff1 in reply to movinngroovin]

I buy thiamine powder and I bought a little set of Salter scales that weigh in .5g . The powder I bought from free range distribution.co.uk. 😀

[movinngroovin in reply to ruff1]

Darn I am in the USA😉

[ruff1 in reply to movinngroovin]

My first lot came from USA - Pure Bulk.inc but I had to pay import tax and it took ages to arrive .Scales are Salter Precision Micro Scales weigh in .05g not .5g 😀

[pwwhite in reply to movinngroovin]

i'm in US also. Dr. Constantini recommends 500mg pills 3 in morning on empty stomach and another 500mg pills 3 at noonish. Solgar is a good brand and on Amazon.

[movinngroovin1 in reply to pwwhite]

Thanks a bunch

[Hidden in reply to pwwhite]

I prefer for my thiamin HCL, 500mg capsules as the capsules are much easier to swallow. The tablet may dissolve slower than the capsule version.

[Rebtar in reply to movinngroovin]

Both Solgar and Vitacost have 500mg tablets or capsules. 8 per day makes 4 grams.

[movinngroovin1]

Thanks again

[ruff1 in reply to movinngroovin1]

John has powder as he finds capsules try difficult to swallow 😀

[Hidden]

Hi, just a comment about thiamine. As you may know, thiamine is an important vitamin that is part of the B-complex (thiamine, riboflavin, niacin, pyridoxine, folate, methyl cobalamine, etc . When you take just one of those vitamins for a long period of time, automatically you're creating a deficiency in the rest of the B-complex vitamins. In the long run it may result in disastrous consequences. Just for curiosity it wouldn't be a bad idea that you'd ask your searching engine which symptoms result from the deficiency of each one of these vitamins individually. You'll be shocked.