Gwendoline Jakins

My husband has PD. We are from Melbourne, Australia

Hi Robert, before getting serious about your problem, I’d have to say your way with words has given us a good laugh or two.

My husband has just been diagnosed with OAB (overactive bladder). He’s been put on a medication, Betmiga. It’s early days, but I reckon there’s been an improvement already. He was getting up a couple of times during…[Read more]

Hi Robert, what probiotics are you taking?

Gwendoline

Mannitol is not used as a sweetener in that way. It’s used to produce diabetic foods by manufacturers, chefs etc.

I sourced mannitol from a wholesaler here in Australia, who imports it for that purpose. It’s the Sosa brand, out of Spain. If you can source it, you will find it much cheaper than the supplement suppliers, as in we pay A$17 for…[Read more]

From what I’ve read on PD forums, the amount of melatonin taken by members varies incredibly. It’s trial and error. My husband takes Valdoxan for anxiety at bedtime. He was also prescribed 4mg of melatonin. Together, they made him sleepy the following morning. It turned out that Valdoxan is a melatonin agonist. We cut out the melatonin, unt…[Read more]

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.