Restore Gold can help patient with PSP? - PSP Association

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Restore Gold can help patient with PSP?

Fredike89 profile image
2 Replies

My husband was diagnosed with PSP one year ago. Restore Gold can help to slow down his illness progressing? Or any medication can help? His balance is getting worst. Parkinson has medication that slow down the progression. Is PSP has any help? A y study group inNew york?

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Fredike89 profile image
Fredike89
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HilsandR profile image
HilsandR

Hi Fredike89 and welcome to the forum.

I am sorry that to date you do not appear to have had any responses. I am assuming that you are in the USA so I’m not sure how your health system works. If you were in the UK your husband would have a team of medical and social professionals looking after him. It is really important to get that support in place ASAP to give your husband the best quality of life and also for your own well-being. My husband lost the battle with PSP 2 years ago but when he was finally diagnosed he was immediately assigned to the care of a Parkinson’s nurse who was only ever a call away to help with any concerns.

Sadly, there are currently no treatments to stop the progress of PSP though I am sure that research is ongoing, but there are medicines that for some can help alleviate some of the symptoms albeit as the disease progresses even these can become less useful.

May I suggest that if you wish to try your husband on Restore Gold then best to run it by his medical team first just to make sure these would not interfere with the efficacy of any other drugs he may be taking.

Once again, so sorry you’ve had to wait for a response and please come on to the forum as and when you need a bit of support as generally there is someone looking in who will come back to you.

Very best wishes as you negotiate the challenges of caring for your husband - it’s a difficult journey.

Hils

Sent from my iPad

WoodworkerRVH profile image
WoodworkerRVH

Hi Fredike 89I had just been writing a long post to you when my battery on ipad died and apparently lost it all . So it may show up again. Who knows? Anyway I had said I haven’t heard of anyone using restore gold and not sure what it is. I have had Likely PSP dx 6/19 but with initial sx since 2017. I have tried high dose CoQ10 despite a negative study on mortality it showed some benefit I balance which is my biggest issue. CoQ10 at 1200 mg / day dint help and led to severe worsening of constipation that resolved after stopping now back to baseline.

I have sticky feet and tend to fall backwards I am currently recovering from severe gluteal hematoma with extension down my leg slowly Improving. I now use a cane at all times and try to never step backward or sideways without hanging onto a grab bar or similar item. Cane helps remind me as much as anything else. I wear padded shorts most of time which help some. They are sold mostly for prevention in sports injuries ( ie snow boarding, skateboarding, etc). I have put up multiple grab bars in my workshop.

Key is not to give up or into disease. I still am doing woodworking and cycling although mostly indoors currently with winter here. I live in Northern Michigan so I live in US as well. I’m sure that there are some research areas in NY that are following PSP. I’m not aware of anything real promising out there However, I think a monoclonal antibody drug to TAU protein in brain is most likely to help.

Hang in there as much as you can PT, Speech therapy and OT may be helpful. I am 71 and retired. How old is your husband?

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