Gwendoline Jakins
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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 apathy returned. After reading about mannitol and the research being done in Israel, he started on mannitol 1tbs. a day in coffee at the end of 2012.
Within a week, he was off the bed, talking, reading the newspapers, doing crosswords, going out with friends and more. His foggiest and dizziness disappeared. GraduallY his facial mask reduced dramatically, his coughing spasms while eating disappeared and his voice got louder.
He started PD exercises twice weekly. He also uses a little peddle bike daily, on the floor and on the table for his arms and goes for a short walk.
We were hoping that his sense of taste might return, but it hasn’t.
Mannitol is not just a diabetic sweetener. My husband was in hospital, a major hospital here in Australia, where they told me mannitol has been used for brain injuries for many years. When I then told our GP, he said it was used when he did his training (1979) at another major hospital for brain surgery. As you said, there’s no money in researching it, so there it’s sat for all this time.
Recently though I thought his facial mask was returning. Also he was coughing from time to time and I thought his voice may be getting softer. Rather than wait and see, we have now started on the infrared (Wellred) coronet. These symptoms have disappeared again. We will see where this leads us.
As far as the bloating is concerned, it is a major problem for some. My husband had been on Omeprazole for digestive problems (I suspect too much red wine). He started taking it again, so no problems with the mannitol and gas. He doesn’t drink wine now, as he doesn’t enjoy it. He knows he’s drinking wine, but can’t differentiate between a good one and a bad one. I’m still hoping he may get his sense of taste back. Some have with mannitol. Maybe the infrared coronet may help.
We have a wonderful neurologist, who we initially met at the Movement Disorder Clinic at the Royal Melbourne Hospital and now see privately. He’s been amazed at my husband’s improvement. We still go to the Movement Disorder Clinic as well, because our neurologist likes their opinion. In fact we have an appointment in July with Andrew Evans, who runs the clinic and is one of the top PD neurologists in Australia. He rang for a phone consult recently and couldn’t believe what we told him. He honed in on the fact that my husband never sleeps during the day at all. He’s up at 7 am and goes to bed About 10.30-11ish. Consequently he now wants to see him.
What a journey we are on.
Gwendoline
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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. Levadopa didn’t do much. They tried the Patch and within a few weeks he was back to normal. It’s now not working, so apathy is back. Xadago hasn’t worked as well, but he has had PD for 6+ years. Have you looked at the B1 protocol. Works wonders for some.
We are trying B1, plus magnesium, B12 and 6 and Mannitol. I think he’s improved more since starting these.
PS We are in Australia.
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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
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Oops, meant to say “my husband started on mannitol at the end of 2019”, not 2012.
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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 Institute using infrared light with a helmet and a mat on the abdomen.
one quote …”It was incredibly exciting to see changes in the microbiome and improvements in symptoms happening at the same time”.
My husband has been taking mannitol for about 18 months with amazing results, both cognitively and in other symptoms as well. The list is long. We started on the infrared light a couple of weeks ago because I thought a couple of symptoms were returning, as in his voice getting softer again and his PD mask getting stronger. His voice has definitely improved again.
Gwendoline