Winnie the pooh, Pat Riddle

[Fed1000]

Where did you end up?

[Bolt_Upright]

Here is Pat's YouTube page: youtube.com/@patriddleparki...

[WinnieThePoo]

I'm not sure. We've just been on a 5 day trip to the UK for my sister's 60th birthday and left the gloves behind. On Saturday I was shivering and getting a really stiff neck (the stoop) and moving badly finding walking and bending down hard. Sunday I increased my Sinemet back to 10/100 QDS and Monday was still not great but by Tuesday I was pretty good. I had decided to leave it a few more days and then last night I was cold and shivering in (our own) bed. Had it not been for that I was starting to think that 2 sinemet 4 times a day was a lot easier than wearing gloves for 4 hours a day.I'm reviewing the situation

[Fed1000 in reply to WinnieThePoo]

Hi Winnie, sorry for dragging you back into the blog. I place a lot of hope in gloves and for me it is important to hear especially from you who I consider a point of reference. Unfortunately I seem to sense a bit of disappointment (or tiredness) in you and I'm very sorry for you. A question Winnie: why do you use Sinemet 10/100 instead of 100/25? Kind regards and many thanks.

[WinnieThePoo in reply to Fed1000]

I use Sinemet 10/100 instead of 25/100 because 25/100 isn't available in France for instant release, and 10/100 was what was prescribed for me.

As for disappointment and tiredness - I don't think so. 4 hours a day is a MASSIVE commitment, but I still think worth it at this stage. It's complicated, and I am a one-man band with no support or guidance about usage, no reference to compare against, and a maddening disease which moves the goalposts all the time. There is an interaction between the gloves and the existing medication, and it took me a fair while to maybe get that right. There is ample scope for confusion and coincidence. There is no reference to compare against. The disease is progressive, and so apparently is the benefit from the gloves. There is probably an acute CR effect, as well as an acute vibrotactile effect, and then a progressive building CR effect. But the disease is not linear or consistent. Not all my symptoms get better or worse together. Today, particularly after sitting down at my computer, still off the gloves, I have dystonia pains (mild ones) , no left arm swing, and can't bend down to tie my shoes, BUT I have no tremor at all, didn't drag my foot once. Last night I was shivering in bed

Confused??? I certainly am. But I think the gloves have had a long term benefit which is sustaining a bit, and in addition there is an immediate CR benefit and simple vibration therapy relief. I am better today on 6 Sinemet 10/100 a day than I ever was at the start of the year on the same dose of the same drug. I don't want that to slide. But when I restart the gloves I shall be back to the drug balancing . And that will mean significantly less C/L ingested

[Ctime in reply to WinnieThePoo]

4 hours a day is daunting. At early stage, 4 hours of treatment plus an hour or more exercise and you are looking at a whole new paradigm for treatment. IE - taking a months long leave from whatever your daily life is, particularly if you are working, to start treatment. This is not impossible, but a significant change in how we approach disease management. Tough to do if it is still of uncertain efficacy.

[NextStage in reply to Ctime]

I'm still working -- I'm an Electrical Engineer but mostly am writing software now. Ever since Covid I have been working from home. When Pete Tass was interviewed on "No Silver Bullet" he said he thought the therapy could be effective if only used on one hand. So, I can use my one single "glove" on my right hand when I'm working -- I just type with only my left hand while using my "glove". Before I started taking Sinemet 18 months ago, then I was also only using my left hand to type because my right hand was so slow and didn't have the finger dexterity necessary to type, so I already had developed my "left hand only" typing skill. I'm one of the few that was helped by Covid since it meant being able to work from home. I can also use my Wellred Coronet while working and not look like a freak. (We don't turn on video in our meetings to use less network bandwidth.)

[Fed1000 in reply to WinnieThePoo]

Thank you so much for the clear and quick information.

[JohnPepper]

I live in a retirement village in Cape Town. I am married to a wonderful lady and we are both very happy. Her previous husband, Tony, died with PD, many years ago. I have to adnire her for marrying another PD patient. She is a wonderful person and I am very privileged to have married her.

[WinnieThePoo in reply to JohnPepper]

John, that's a lovely comment, and I wish you and your wife every happiness. But what on earth is that comment doing here?

[JohnPepper in reply to WinnieThePoo]

Search me!

[JayPwP in reply to WinnieThePoo]

😆😆😆

[WinnieThePoo]

Well the dystonia has returned full intensity. I have been off the gloves since Thursday and on 2 sinemet QDS since Sunday and if I didn't have the option of the gloves I would be looking for an urgent neurologists appointment.As it is I'm going to restart the gloves tonight and hope that I can drop to 2 hours a day quite quickly

[Bolt_Upright in reply to WinnieThePoo]

Good luck and may God bless you.

[Fed1000 in reply to WinnieThePoo]

Winnie you are in a phase of experimentation and adjustment that characterizes our disease. I hope you find tke right mix soon.

[WinnieThePoo]

Just finished the latest webinar by Dr Tass. There was really nothing new. He forecasts that his gloves will be available for general release in late 2025 or 2026 if all goes well. They have 10,000 people on their waiting list!

[Fed1000 in reply to WinnieThePoo]

Times are getting longer. Thank you for information.

[Buckholt in reply to WinnieThePoo]

I wonder whether they will Licence the technology to allow a number of manufacturers to supply the gloves? If this system works as well as we hope, demand will be huge especially if insurers and NHS in the UK approve the use

[WinnieThePoo in reply to Buckholt]

Maybe. But not before they have finished testing and authorisation, and that looks like being not before 2026. They have dropped Synergic and appear to have Boston Scientific as their new partner. And Boston have not only the expertise and experience but also the ability to scale up to volume.

[WinnieThePoo]

When you consider it is now December, and nothing has happened yet.