Gwendoline Jakins

Sandy, see my reply to Mary Beth Skylis, it may help.

Gwendoline

Hi Mary Beth, the two things I’ve seen work are mannitol and the infrared coronet. Mannitol turned my husband’s life around. He had extreme apathy, caused by lack of dopamine. It improved so many of his symptoms.

The infrared coronet has worked for many PD patients, including one, as reported by his wife, who picked up his brushes and sta…[Read more]

Hi Larry, can to share your treatment with us please.

Gwendoline

Hi Lorella, if you google mannitol for Parkinson’s Disease, you’ll see plenty of information on the current research, including scholarly articles on the research being done in Israel. What also popped up was an article on this site dated July29,2020. What isn’t mentioned is that it’s been used in hospitals since at least the 1970s for brain i…[Read more]

Hi Lorella,
I feel for you. What a roller coaster you are on. My husband improved with Mannitol First it was his non motor problems, apathy in particular, then many other symptoms.

He has just started using the Infrared coronet and Therapad.

I’ve had problems sleeping. My husband doesn’t have any issues at night most of the time. But…[Read more]

Hi again Diana, you somehow have to stop worrying about what might happen. It’s easier said than done, I know. As you say, everyone is different and progresses at a different pace. Your husband probably will never be difficult to deal with. My husband is very placid, but his apathy drives me mad. I never was a patient person. I have to do t…[Read more]

Hi Kathy (and Diana),
My husband was on the Neupro patch (Rotigotine) for a few years with great results. His major symptom was extreme apathy, as in not being interested in anything or doing anything. When it stopped working in 2019, we tried mannitol, after looking at the research and getting our pharmacist to check it out. At this point he…[Read more]

Beth, the brand I got here in Australia is the Sosa brand out of Spain.  I’ve resorted to buying it on eBay  as well to try a different brand when my supplier ran out.  I don’t think any of these are Australian.  I’m hoping we can get my husband’s sense of taste back, so will keep trying other suppliers.  Will try Bulk Supplements next.

Gwendoline

Hi Dennis,

i don’t think there’s any connection between either of those drugs.  Google “mannitol and Parkinson’s Disease “.  A lot of info there, including scholarly articles.  I imagine the trial, which should have been completed by now, didn’t get started due to Covid.  It’s now saying 2022, although that may not be updated.

You w…[Read more]

The initial research ( which I got our pharmacist to check) said 1tbs. in coffee. From what I’ve read on forums, people seem to take less and get results. Others get no benefit. My husband takes 1tbs. It’s all trial and error, I guess.

Regards,
Gwendoline

Hi Thomas,
Sosa is the mannitol we have used all along, but the wholesaler here in Australia has been out of stock and may not bring it in again.

So I thought that, although it did wonders for my husband, we might try another brand in the hope that he may get his sense of taste back, as a couple of PD people have. I have bought one lot off…[Read more]

Hi again Kathy,
I’ve remembered the supplier in the US that supplied the mannitol that restored a PD patient’s sense of taste. It was Bulk Supplements. They ran out of supplies, and that’s why he changed suppliers.

The interesting thing is that this company gets supplies out of China, so it could be from your source. A member reported that…[Read more]

Thank you Kathy, I will try your mannitol. I’ve heard this story before. A PD patient was using mannitol from a supplier in the US and bought it elsewhere when it was no longer available from that supplier. He then lost his sense of taste again.

The discussion that evolved from this patient’s report mentioned the source of the mannitol,as in…[Read more]

Beth, the research that was done in Israel suggested 1tbs.in coffee for normal weight. Our pharmacist checked the research before my husband started taking mannitol. He reported back that taking more was detrimental. You are not in the normal range weight wise, so I guess it’s a possibility that you are taking too much….just a thought.

Gwendoline

Oops, meant to say “my husband started on mannitol at the end of 2019”, not 2012.

Hi John, our story is similar to yours. My husband’s most serious symptom from the very beginning was apathy (on or in his bed almost all day). Because of this he diagnosed with Lewy Body Dementia (2012). It was the Neupro patch that got him off the bed and he was then diagnosed with PD. All was well in that area until 2019, when the extreme…[Read more]

Infrared light …we have bought my husband a infrared light coronet and I’m ordering a mat as well for the abdomen.  It’s been highly successful for some PD patients, both for motor and cognitive problems.

In The Weekend Australian newspaper this weekend there’s a long article on the results of research done by the Australasian Research Institut…[Read more]

My husband has been on Xadago since  May.   And yes, my husband, who has severe apathy, was much improved.   He’d been on the Neupro Patch for 6 years and that was amazing as far as his apathy was concerned.. Like flicking a switch.  He was initially diagnosed withLBD (Lewy Body Dementia).  He was lying on the bed looking at the wall.  Lev…[Read more]