Gwendoline Jakins

My husband was diagnosed with Lewy Body dementia initially, but the diagnosis was changed to Parkinson’s after he went on the Neupro patch. He actually had extreme apathy, which disappeared on the patch. Madapar made no discernible difference to his symptoms.

The patch can have serious side effects, so needs to be monitored. One is a…[Read more]

My husband’s neurologist says PD patients don’t do well in hospitals. We have had mixed experiences in that regard. When he (Alan) was in one of our major hospitals, the doctor bent over backwards to get his supplements into the system. It was the doctor, not the hospital, though. At that stage, I was taking him in an iced coffee with his man…[Read more]

Hi Angela,

Have you looked at anything that may help your husband besides what the neurologist has prescribed. Nothing they can give stops the progression of the disease. But there are things that help. Fortunately our neurologist has an open mind and doesn’t mind if we try vitamins and supplements. As he says, they don’t get res…[Read more]

Hi Marlo,
We bought our mannitol, here in Australia, from an importer of European foods. It’s the Sosa brand out of Spain. It’s very cheap compared to the brands being sold by supplement suppliers. I think you can get it direct from Sosa.

The suggested dose in the research out of Israel is 1tbs. and no more. I’d start with a teasp…[Read more]

My husband had extreme apathy before he was diagnosed with PD. He was initially treated in hospital for depression. He was then rediagnosed with Lewy Body dementia. Levadopa appeared to do nothing. Fortunately he was attending the Movement Disorder Clinic at The Royal Melbourne Hospital, here in Australia, where a number of neurologists saw…[Read more]

I take Magnesium Citrate capsule for cramps (100mg) every night. If I don’t, I get cramps. (I don’t have Parkinson’s, I’m the carer).

Gwendoline

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]