[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 addictions, as in gambling, increased sexual urges, binge eating. Our neurologist says he has had a couple of patients with one of these side effects.

Gwendoline

[gwendoline-jakins]

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 researched, as they can’t be patented, so there’s no money in them.

We tried the B1 protocol, which has worked miracles for some PD patients. We had amazing success with mannitol. It turned my husband’s life around.

If you want to know more, look at the Cure Parkinson’s HealthUnlocked site. If you join, you can look at my post on mannitol (my user name is gwendolinej). You can also look at the B1 protocol and more, by putting them in the search box.

Has he had his bloods done. PD patients are often low on the B vitamins, B12 in particular, also D3.

As a carer, you can get a lot of support from these sites. We are in this together.

Gwendoline

[gwendoline-jakins]

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 him. One suggested trying the Neupro Patch. Within a few weeks he was back to normal mentally and out of bed, where he’d been spending most of his time. He was rediagnosed with Parkinson’s.

The patch worked for a number of years, till 2019. Then he returned to the bed. On the HealthUnlocked Parkinson’s site I read about research being done in Israel on mannitol, supposedly a diabetic sweetener. I had our pharmacist check it out, sourced it here in Australia from an importer of diabetic foods and off we went.

It was amazing. Within a week he was off the bed, communicating, doing crosswords, reading newspapers. We even went to friends for dinner, where he talked all night. The improvements went from there. His dizziness and fogginess disappeared, his Parkinson’s mask also went. He started a Parkinson’s exercise program twice weekly. I have detailed all of this and more in a post on the HealthUnlocked Parkinson’s site.

I discovered later, when he was in hospital, that mannitol is used in hospitals for brain injuries. When I mentioned it to our local doctor, he said that when he was training in the late 1970s in one our major hospitals, they used it for brain operations.

From what I’ve heard from others on the site, mannitol seems to work very quickly for non motor symptoms like my husband’s, and can help other symptoms as well, but takes longer. But, like all meds and supplements, doesn’t work for everyone.

Mannitol can cause gas, so needs to be started slowly. The recommended dose was 1 tablespoon, but I’d start with a teaspoon.

My husband’s neurologist was surprised and delighted when he saw him. He immediately checked the research, and in fact, sent us more information on the research.

We have just bought the Wellred infrared coronet and Therapad, which has helped other PD members. The Therapad helps with the gut.
I’m using them too. They might help my poor little brain. The neurologist says some of his patients tell him they are using them and he sees improvements.

The recent research done here in Australia was, according to our neurologist, done by highly thought of researchers.

I hope our story helps someone.

Gwendoline

[gwendoline-jakins]

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

[gwendoline-jakins]

My husband has PD. We are from Melbourne, Australia

[gwendoline-jakins]

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 the night. The last couple of nights he’s gone right through the night,fingers crossed ?.

During the day, we’ve been setting the timer for every two hours, now taking it out to 2.5 hrs. If he’s sitting in a chair for a long period, he doesn’t feel the need to go, but he’s had huge leakage without knowing. He wears a pull up, but it hasn’t helped on occasion.

Another treatment talked about by the urologist is Botox. It’s drawbacks are that it only works about 60% of the time and needs to be repeated regularly.

I pass this on in case it’s of benefit to you or other members.

Gwendoline

[gwendoline-jakins]

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 500gr. Some members have ordered it direct from the company.

My husband has been taking it for 18 months. It had an amazing effect. He was suffering from extreme apathy. That disappeared very quickly, along with other symptoms. He voice grew stronger, his PD mask reduced, his cough disappeared and much more. More recently it’s not working as well. I’m not sure where to go from here. He has been taking 1tbs. a day in coffee. That was the dose initially recommended in the research.

Gwendoline

[gwendoline-jakins]

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, until now.

Recently his legs have been jerking in the night, so we have introduced 2mg of melatonin. It doesn’t seem to make him sleepy. It’s only been a couple of nights, so it’s too early to know whether it’s helping the problem. Certainly he was much quieter last night.

Gwendoline

[gwendoline-jakins]

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 started painting again. When I mentioned it to my husband’s neurologist, he said that a number of his patients have reported that they are using it with great success. It’s made in Tasmania, Australia, is quite expensive, but it’s worth a try.

My husband is now using the coronet. Too early to tell if it helps. The mannitol has worked wonders for 18 months, but not as well now as it was.

I hope this helps.

Gwendoline

[gwendoline-jakins]

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 was on the bed about 20 hours a day. He was also choking on food, had a PD mask, a soft voice and more. Within a week his apathy started to disappear and as time went by the choking disappeared and his mask almost disappeared. His voice also got stronger. The other thing that disappeared was his foggiest and dizziness in the mornings, which meant he could start PD exercise classes, which he does twice a week.

When my husband was in hospital and I mentioned the mannitol ( as I didn’t want him not having it), the doctor told me they’d been using mannitol in hospitals for head injuries and operations since at least the 1970s. Until now, there’s been no further research into it because (as our neurologist says) you can’t patient a vitamin or supplement, so there’s no money in it. It’s not just a diabetic sweetener. He takes 1tbs. a day in coffee, as suggested.

In recent times I felt that his apathy may be returning and his mask was definitely more apparent. So, not waiting to see where it’s leading, he is now using the Infrared Coronet and Therapad. Recent research here in Australia was very encouraging. My husband’s neurologist said that a number of his patients are using it with good results.

I am exhausted mentally as with the apathy increasing again, I’m having to push to get him to exercise. I’m just hoping the Infrared coronet etc works for him (and me).

Gwendoline

[gwendoline-jakins]

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 won’t get instructions, as it’s being sold as a diabetic sweetener.  The initial research, which our pharmacist checked out, suggested 1tbs in coffee once a day.  You may need something for gas.  It seems to be a problem for a lot of people and is mentioned in the research.  My husband takes omeprazole, which he’s been on before PD, probably because he drank too much red wine. ?.  Now he doesn’t drink wine, as he can hardly taste it.

Gwendoline

[gwendoline-jakins]

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 mannitol in it. I wasn’t going to ask. When I did mention it to this doctor, I found out that mannitol is still used in hospitals for brain injuries, it’s not just a diabetic sweetener!

On his next visit to hospital, I just took the supplements in and gave them to him. I wasn’t going to test the system…naughty girl????

Gwendoline

[gwendoline-jakins]

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 teaspoon, as gas (reflux) can be a problem. If you google The Science Behind Mannitol, you’ll get quite a bit of information.

[gwendoline-jakins]

Hi Robert, what probiotics are you taking?

Gwendoline

[gwendoline-jakins]

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

Gwendoline

[gwendoline-jakins]

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

Gwendoline

[gwendoline-jakins]

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 injuries and brain surgery. I found this out when I mentioned mannitol to a doctor in ICU at one of our major hospitals here in Melbourne, Australia. This was confirmed by our GP, recently retired, who confirmed that it was used for brain surgery when he did his training in late 1970s. My husband’s neurologist and our pharmacist both checked out the research. The neurologist did this after seeing my husband’s amazing improvement, particularly the apathy, but many other symptoms.

As our neurologist says, there’s been no research as “there’s no money it”. This also applies to vitamins and supplements.

As far as the Infrared Light therapy is concerned, there’s recently been research done here in Australia. The results will be published later this year, but in the meantime, if you google Professor Hosen Kiat and Parkinson’s, you will be able to see an interview on the subject. Our neurologist said Professor Kiat Hosen is highly respected. He also said that a number of his patients had tried the Infrared coronet with some very good results. There’s been quite a lot of discussion on the HealthUnlocked site and I’m assuming his patients got the details from there or maybe from here. The company that is most well known for the coronet and the pad (Therapad)is Wellred, again they are here in Australia and export worldwide. We have both, and will report on them at a later date.

I hope this helps.

Gwendoline

[gwendoline-jakins]

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, because I’m so stressed, I didn’t sleep well. Melatonin has solved that problem to a great degree.

I don’t know if any of this helps, but I thought I’d pass it on, just in case.

Gwendoline

[gwendoline-jakins]

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 the driving. I am bossy, so that helps?

My husband doesn’t have your “garden variety PD”, as our neurologist says…if there is such a thing. He doesn’t have a tremor, which made it hard to diagnose initially.

I have a friend with PD who is 96. His PD has progressed very slowly. He’s actually the carer for his wife, who has dementia.

We can be very thankful for these forums, as we can support one another and pass on our experiences.

Gwendoline

[gwendoline-jakins]

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

[gwendoline-jakins]

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

[gwendoline-jakins]

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 eBay. My husband has just started using it. Maybe we’ll try Bulk Supplements in the future. Pity about the price. Sosa was so cheap.

Regards
Gwendoline

[gwendoline-jakins]

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 when he queried why the company says it’s products are American, they said they can do that for some reason none of us could understand. This was reported on the HealthUnlocked site. I’m sure they won’t mind me mentioning that here, as this site is mentioned regularly on that site, along with links.

Regards
Gwendoline

Ps when I looked at Amazon, the only supplier they show is Bulk Supplements ?

[gwendoline-jakins]

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 seaweed, mushrooms etc.

I’ll try Amazon, if I can get the same one as you. My initial experience in ordering mannitol from Amazon back in 2019 was a disaster. When I saw that the mannitol was coming out of China I wasn’t happy, as we have no idea as to what their controls are like, if any. Anyway it didn’t arrive and I got a refund. No doubt Amazon has a more reliable source now.

I’ll report back if anything changes.