Starting Mannitol

[Mjm012649]

Do you take mannitol instead of Carbidopa? If not, do you cut down on Carbidopa if you take mannitol? Hubby is 195lbs. What would the dose be?

[CaseyInsights]

Use of mannitol is in no way related to carbidopa intake.

As for mannitol it is used as a sugar replacement, use of which has brought some symptom relief to a few with PD.

I tablespoon per beverage should be fine. Watch out for the gas. Some experience uncomfortable bloating.

[alaynedellow]

Mannitol is an addition to your regime. I get mine from syncolein. com. If you look that up on the internet it has an info sheet which you may find helpful.

[gwendolinej]

You will find, as alaynedellow said, the syncolein site very informative. It shows how the research started very slowly and grew. There’s now a big trial in the US.

The syncolein Mannitol is made especially for PD and has something in it for “gas”. I get ours in Australia from a supplier who imports the Sosa brand (used as a substitute for sugar). It’s out of Spain and can be sourced direct. It’s pretty cheap.

Good luck and keep us in the loop,

Gwendoline

[Mjm012649 in reply to gwendolinej]

Thanks! I will research with your info!

[Berrytog in reply to gwendolinej]

Hi Gwendolinej

I just thought I would touch base, apologies for coming in on this post. Yes I am still up for mannitol but the controversy over the diagnosis and therefore prognosis continues. If you recall the doctor who diagnosed Parkinson's twelve months ago is now having second thoughts following his home visit and trying to match the symptoms as my wife's memory and verbal dexterity are excellent, in fact one could say her personality has levitated to a higher level although a little remote and sarcastic to her carers.

Yesterday we visited a wheelchair facility where she had been measured previously, the attendants are all qualified with degrees in psychology and have worked with all manner of patients with mental issues including Parkinson's and they are of the opinion that his is not Parkinson's but possibly the result of a minor stroke to the frontal lobe which facilitates the emotions and behaviour.

So, I am still,up the swanny without a paddle and therefore wait for the eminent neurologist Jonathan Chan to cast his opinion. For me the stress, anxiety and depression are caused by the not knowing and therefore the course I must take in dealing with the problem, viz. do I have years in front of me or should I be planning to shut up shop.

For us the lockdown is not as bad for some and we should be thankful for that although with no visitors other than the housekeeper and gardener whom she rarely talks to,particularly the gardener as she is outside the house this is having a bad influence on her already bad mental health spending a lot of the time staring at the wall, refusing to even watch television. My next move, following the Chan diagnosis is carers that visit in the day to entertain and if that works a suitable live in carer and then if there is no real improvement in her mobility as she refuses medication, notwithstanding the fact that Mannitol, should it be beneficial, can be easily administered in her diet, I will invest in a suitable vehicle with wheelchair access as yesterday was an eye opener for me, who,was expecting all sorts of problems when we visited the wheelchair surgery but it was a walk in the park and I am buoyed by this. it is worth the risk of the investment which will allow visits to relatives and friends and trips to the coast down memory lane. It will do me good as well!

[gwendolinej in reply to Berrytog]

Hi there, what a journey we are on. At least you have these very well qualified people involved now. Has she had pet scans and an MRI?

Alan's Parkinsons officially started in 2012. He did have a small stroke about 3 years ago. To confuse things further, a small scar from the stroke is in the same section of the brain as the PD. In fact, until mannitol, the neurologist was starting to think he now has dementia. It was severe apathy, which was his first symptom back in 2012, when, after spending a week in the Movement Disorder ward at The Royal Melbourne Hospital, he was diagnosed with Lewy Body Dementia.

I, like you, was wondering if the journey was long or short. In fact, I took out funeral insurance, as my bet at that time was that it would be a good investment, as the journey would be short. Bad bet 😆

Your wife, in so many ways sounds like my husband. The main difference is that she's not taking medications. Alan started on levadopa, which didn't seem to do anything. He, at this time was attending the Movement Disorder clinic, at the Royal Melbourne Hospital, the director of whom is Andrew Evans, an amazing neurologist, involved in research and trials, lectures, etc. He mentored our neurologist, who we met at the clinic and then decided to see privately. (Trying to see Andrew Evans privately, which we did a couple of times, was too hard. He's too busy).

It was our neurologist, after discussion with Andrew Evans, who suggested trying the Neupro patch, which after a few weeks, got him off the bed and back into life. He was then rediagnosed with Parkinson's. He even went back to driving.

We visited our neurologist last week. I wanted him to SEE Alan, no phone consult. (We are in lockdown). He was very pleased at his improvement. He's walking better, his right hand was normal, left was better. Got him to do the pull test...really good. He doesn't have a tremor.

Our neurologist likes Alan to go the Movement Disorder clinic, just to second guess him. Coincidentally, we had an appointment with the clinic yesterday (by phone) and Andrew Evans himself rang. When we told him about the mannitol, he was full of questions. He wants to see him again in twelve months time.

There doesn't seem to be a definitive test for PD. If, like my husband, she does have PD, she needs to take medications, as they can relieve the symptoms and do for most people. If they relieve her symptoms, it could tell them she does have PD.

Levadopa seems to help most people. We were lucky early on as the Movement Disorder clinic. They had access to the Wearable PKG system. It's a watch that measures the effect of levadopa after you've taken a tablet. Our neurologist has access to it too. Ithink because they were involved in its trial. It's an Australian system, which I think, is now available else where.

Alan still takes levadopa. What the watch showed (from the beginning) was that it worked when he took the tablet, not as well as it should and only for a short time. Most members talk about on and off periods. Alan doesn't feel any change. We have just received the watch in the mail. He will wear it for a week. It reminds you when to take the tablet and then measures the effect. We send it back and a report will be sent to the neurologist. We will then cut down the dose and in time measure it again.

I'm trying to give you as much information as possible, as your wife seems so similar to Alan. And maybe I can make the journey a bit easier if I tell you how we got to this point. It might give you hope.

Until she takes the PD medications, you won't really know if it is PD, and even then, they can't be100% sure. Even the best specialists can be wrong. They know so much and so little about the brain.

I see you are in the UK. There is a very famous UK neurologist, Professor Andrew Lees, now retired, who mentored our Andrew Evans a long time ago. He was mentioned on this site and the article had quite a lot to say about the fact that he felt that the system is broken and is run by lawmakers, hospitals, etc. It was very interesting, if you can find it.

I probably should have sent this message privately, which I could do by going on to your profile, as it's probably of no interest to anyone but us.

Anyway, I hope you get some help soon. Keep me in the loop.

Gwendoline

[Berrytog in reply to gwendolinej]

Good morning Gwendolinej

Thank you for your much detailed information, it is of great help and there is a lot of similarity between Alan and Lesley, my wife. Yes I feel I am up the river without a paddle going from frustration to depression and anxiety. I am still waiting for the experts opinion however the doctor that diagnosed Parkinson's a year ago and visited two weeks ago has written to our GP with a copy to us saying that he now thinks that it is not Parkinson's but Parkinson's symptoms and that following his visit he now suggests the possibility of Supranuclear Palsy as she has the gaze staring at the wall but her short term and long term memory are excellent. This is a very rare symptom with some that mimic Parkinson's apparently.

Clearly, as Lesley takes no medication of any type it is difficult to determine her problem and she will not say why to me or the doctors but I believe it is because she blames her condition on the medication she was taking. Lesley is apathetic like Alan was and this could be depression as she has suffered from depression and anxiety most of her life. But Lesley has lost the use of her right hand and her legs are bent at the knee, we have been told that the Levadopar and Physiotherapy could correct that but she does not believe it. Lesley also can get quite irate with me and the carers if she does not get what she wants, probably caused by the frustration of her condition but equally so she feels secure in her room and is reluctant to go outside even in the garden, although the trip to the wheelchair clinic last week presented no problems other than pulling her up the steps from the patio to the back lawn to meet the ambulance caused me to fall backwards with Lesley and the wheelchair on top of me, fortunately the ambulance crew were on hand and with the aid of the hoist we were on our way. The success of the outing prompted me to think of buying a vehicle with wheelchair access, the ones we have would not be suitable. Before lockdown we were visited by the local psychiatric team and others but since there have been few visitors which has not helped Lesley's mental state nor mine for that matter. I have seen a deterioration over the months but when we have visitors, even the house cleaner, she seems buoyed and is more responsive. We had a psychologist visit every week for ten weeks before lockdown and he was of the opinion that Lesley's personality has a lot to do with her condition but at the moment we do not know what we are dealing with, as you say the brain is very complex and in this case diagnosis is made more difficult by both character and lack of medication which might prove to have been the wrong medication in any event. Lewy body had been suggested at one time as a possibility by those that diagnosed Parkinson's and have now changed their minds.

Of course whatever the correct diagnosis, and our GP says there could be many contributing factors not just one, we will still be left with taking medication, which cannot be forced as she is deemed to have 'capacity' and no dementia. And all of this gives me no peace of mind with no clear path to go down. I do believe that the Mannitol may be beneficial and would be easy to administer as it is not classed as a medicine but a supplement and therefore I would not be breaking the law. In all of this there are two main contributing factors to moving forward to some sort of quality life, no proper diagnosis and the refusal to take medication. I have arranged for carers to visit during the day for companionship and amusement to occupy her mind. If this works I may resort to a full time live in companion/carer. It may be better to communicate via email In future if that is possible

Thank you for your kind help and contribution.

Roger

[Masterka]

I just started on mannitol, how good is it, also does anybody know the correct dose,

[Mjm012649]

Just started. Will let you know. Started with half a teaspoon... now doing 3/4 of a teaspoon.