Restore Gold?

[Fullerjoy2]

I’m new to the forum. My husband is entering his third year with a formal diagnosis of PSP. A well-meaning relative insists that Restore Gold would help him, based on a recommendation from someone with Parkinsons. Has anyone tried this product who has PSP? Thx.

[Dadshelper]

Here a link to a previous post on Restore Gold.

healthunlocked.com/parkinso...

Ron

[Fullerjoy2 in reply to Dadshelper]

Thank you. I’m new to this forum, and was trying to isolate info specific to PSP. The link appears to be re: Parkinsons. But that gave me some info I can bring up with the doctor. Thx

[honjen43]

Welcome to this site! I understand why you want to try everything that is suggested by others.

I have been here for just over 3 years. Sadly, there has not been a lot of positive feedback on any treatments so far that I have seen, other than occasional medical trials. None have been more than palliative. There have been numerous 'scam-like' posts of other miraculous 'cures'.

There have been some posts from the Far East (India, I think) that have found help through diet and/,or herbal treatments used locally.

The only helpful treatment, other than those that have been prescribed, that I recollect, has been with CBD cannabidiol from cannabis. This has helped relieve some symptoms. Nothing has been posted as a cure.

When my husband was ill with CBD (corticobasal degeneration)/FTD (frontal lobe dementia), we tried nothing other than Parkinsons meds - which did little - as deterioration was fast and gave little time to think.

It is always worth taking the chance, if you feel it might help, but be aware the cost may be $ high; but if you feel there is an improvement in symptoms, then that may make it worthwhile.

Just be careful what you try! There are a lot of 'quacks' out there who only want your money!

Hope you persevere along your journey with PSP. It is always worth posting effects of whatever you try, since it may help others now or in the future on this site.

Hugs

Jen xxx

[Dadshelper]

I did some digging and Restore Gold is mfg and sold primarily thru a company/organization called We Have Parkinson's.

This is taken straight from their own website:

"Ingredients found in Restore Gold™ are not established by the FDA (Food and Drug Administration) for treatment for Parkinson's disease. Restore Gold™ is a supplement, which not considered a food or drug. ... All ingredients in our Restore Gold™ are listed as “Generally Recognized as Safe” (GRAS) by the FDA."

Also take into consideration that Parkinson's is a dopamine issue in the brain and PSP/CBD are a Tau protein issue. I grant that is a vast generalization of the diseases but it does show there are differences.

I can't say one way or the other of the effectiveness of Restore Gold as I have no first hand knowledge of it. All I can say is the more info a person has helps in leading to better decision making.

Good Luck,

Ron

[Fullerjoy2 in reply to Dadshelper]

Very nice of you to research this for us, Thank you.

[LuisRodicioRodicio]

Hi Fullerjoy2!

I'm sorry PSP has entered your family.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.

I am not a phisicyan. During the 7.5 years in which we are living with PSP, I have been collecting information on the PSP stages as well as solutions and experiences for the different symptoms that may appear based on our own experiences and those of other chat members to offer everything as a suggestion to PSP patients and caregivers. The information is done with good will and with the best technical criteria that I can provide, especially thinking of the support of caregivers.

Wishing the best for you and your family and if the document with our experiences and our solutions can be useful, do not hesitate to let me know to send it by private mail through this chat.

Hug and luck.

Luis

[Hidden in reply to LuisRodicioRodicio]

Hello, my mom was diagnosed last Dec with PSP, but I think she's had it for 4-5 years now. She's now in a wheelchair full time, eats only pureed food and thickened liquids, has slurred speech, gazed eyes often, and sleeps a lot. What can I expect next? Not knowing is so tough. She never complains which I am so grateful for. From all my reading about PSP, everyone's journey is different but if you can share what steps you've experienced, I'd appreciate it.

[AK731 in reply to Hidden]

Hi I lost my husband on 27 August after 7 yr battle with PSP. He never complained either. I think at this stage you have to be careful of choking and coughing and aspiration if food goes down the wrong way. Also you have to be careful of pressure sores as your mum is sitting all the time. Pressure cushions help and of course moving position often. I had a standing hoist which I used up until the end. I also had antibiotics on hand in dry form so that if I thought he had an infection in the chest I could administer if it was at the weekend. Take care of yourself as it is extremely difficult being a carer. It is a 24/7 job. I admire you for looking after your mum. Pat AK731

[Fullerjoy2 in reply to LuisRodicioRodicio]

Thanks. At this point my main question is about Restore Gold for PSP symptoms. Nice to find a group that is there for questions and support.