Anecdotal experiences with Parkinson’s

[pdpatient]

Hi, I am interested in stories about your experiences,, living with Parkinson’s. For example, I noticed that in my case, personal hygiene was the first to suffer. Next was self discipline.

What is your experience?

[RS313]

When you say Hygiene..do you mean a funky smell that came after DX? or just that you dont have the energy to bathe any longer? I have acquired a bad odor that i cant seem to get rid of no matter how many showers i take! It is very bothersome anyone else have this problem? what do you do for it if so.

[parkie13 in reply to RS313]

Can anybody else smell it or is it just you that can smell it? This is just an idea, Can you soak in a bathtub with epsom salts or baking soda? I wonder if that would help. ?

[RS313 in reply to parkie13]

I am not sure if anyone can smell it.I have very loving family and friends that always say i dont smell but i can smell me so i think they just dont want to hurt my feelings.The soak may be an idea.i heard a little apple cider vinegar too as well as the epsom salt and baking soda. I guess i feel like if i smell me then others can too? Is it just me?

[Xenos in reply to RS313]

It happened to me during a year appprox, before loosing my sense of smell - an all too common PD symptom. You could be on the same track.

Mannitol helped number of people into recovering their sense of smell.

[RS313 in reply to Xenos]

i havent lost my sense of smell it is the opposite i smell my self smelling bad like mens BO or something and i cant get rid of it and dont know what causes it.I hate this

[pdpatient in reply to RS313]

RS313. I meant the energy mostly. Also , the motivation. Even for a simple thing like brushing teeth.

[pvw2 in reply to RS313]

Quote: A Scottish woman who astonished doctors with her ability to detect Parkinson's disease through smell has helped scientists find what causes the odour.

Researchers in Manchester said they had identified the molecules on the skin linked to the smell and hope it could lead to early detection....

The research revealed that a number of compounds, particularly hippuric acid, eicosane, and octadecanal, were found in higher than usual concentrations on the skin of Parkinson's patients.

They are contained in sebum - the oily secretion that coats everybody's skin, but which is often produced in greater quantity by people with Parkinson's, making them more likely to develop a skin complaint called seborrheic dermatitis....

bbc.com/news/uk-scotland-47...

[RS313 in reply to pvw2]

UGH!! so i guess i am just going to be stinky for the rest of my life

[pmmargo in reply to RS313]

I would still be your friend even if you smelled horrible. You might have some issues with the women though

[pdpatient in reply to pmmargo]

LOL. RS313 is a woman! One would hope that her women friends would understand.

[pmmargo in reply to pdpatient]

Oops. So sorry RS313. Best Wishes!

[kaypeeoh]

Before PD I was dx'd with MS. Multiple Sclerosis. After a year on MS meds the neuros decided it might be Parkinson's. One of the main signs of MS was I would smell things that weren't real. I still have days when I smell odors that aren't real. One of the places PD can effect is the olfactory bulbs in the brain. One of the signs of PD is loss of ability to smell. I don't think loss of that ability is much different than smelling things that aren't real.

[pmmargo in reply to kaypeeoh]

I agree I lost my sense of smell but it returned with mirapex. I am grateful to have it back. My ability to taste returned too. Every thing used to taste salty. I’m thankful for these miracles so don’t assume your brain has irreversible damage.

[johntPM]

I think there's a number of things going on here: the act of receiving a Parkinson's diagnosis is a life changing event which makes you reevaluate your priorities; it often leads to a degree of depression; PD makes you slower and less effective at washing. These features lead to less effective personal hygiene

My wife noticed that I had a fungal smell before and after I was diagnosed. This might be the smell that Joy Milne, the woman who can smell PD, is smelling.

sciencealert.com/this-woman...

[RS313 in reply to johntPM]

Mine smells like a mans body odor and i have never had an odor before i am very clean and shower everyday sometimes twice

[pvw2]

Now at the beginning stages of PD and with the realization of what exercise can do and how much is needed, I've actually become more self-disciplined with exercise. I saw what PD did to my brother and realize now is the time to act because later becomes harder.

[Oceanflow]

I too have noticed a change in my habits regarding self-discipline. I feel like I need a boss or a life coach or a new life partner to help organize my life a little bit. Part of it is that I transitioned recently from work to a forced early retirement (I am in my 50s) and the other part of it is my kids are not at home anymore so I don’t have anyone to cook for. At first it was freeing and welcomed, but now it’s a disaster because I can’t get things done as I avoid tasks and procrastinate. And as for the Parkinson’s smell, mine is a slight musky earthy smell. The oily skin where the smell emanates from is just on my upper back so I exfoliate that spot as best I can!

[JohnPepper]

Not all Pd stories are about problems. I have been able to reverse most of my Pd movement symptoms and have been Pd-medication-free since 2002. I am now 85 and beginning to feel my age.

[ConnieD in reply to JohnPepper]

John do you continue to fast walk?

[JohnPepper in reply to ConnieD]

Hi ConnieD. No! I'm afraid that with the Atrial Fibrillation I have been unable to get back to speed. I have to remember that I am 85 years old and I should not expect to do what I did when I was 60.

[rch21]

Though lack of motivation is common in PD, it can be overcome by exercise and routine. In fact,a well designed exercise program can help with a routine,as well. I was diagnosed 9years ago and have had symptoms for closer to 15 years. Though not able to get off meds, I am ab!e to still travel, racewalk, take classes, etc. I coached high school track until last summer. I know that the ennui that hits so many is tough to get last. But once you do, things are more manageable - if you have a card partner, they can help here if you let them. Took me a long time to do that.

[HersheysMom]

I retired this summer at 70, but I still keep an online calendar and schedule some type of exercise every day. I do Rock Steady Boxing three times a week, Pilates twice a week and Dance Class twice a week. Some days I also do water aerobics. What works for me is to schedule these items on my online calendar and add in get-ready time and travel time. So for a 10:30 class, I schedule a get-ready time of 9:30. When that buzzes, I start moving.

I tell myself that for every day I exercise, I'm adding a day to my life. I have no idea if that's true or not, but I live as though it is. I'm doing it all for my grandchildren.

[pmmargo in reply to HersheysMom]

Love rock steady boxing. Great club in Fulton Maryland

[Tribselyov]

I have noted that my flatus is no longer is odiferous.... or is that just bad humour...

[caitilin in reply to Tribselyov]

Are you sure that your sense of smell isn't is just gone. I don't smell myself anymore and wonder if others do.

[katherinecompton22]

Self discipline, something I don't have a surplus of, has become more important in relation to exercise, routine, supplement use, etc. BUT, I can still be flexible enough to weather those wonderful days when I need to conform to grandkid time (which, translated, means chaos).

I have learned that PD can cause some bizarre things, but that it doesn't cause ALL my problems. I blamed my PD for a general dullness and muddiness in my vision, present for 3+ years. A new optometrist found it to be due to sediment build-up coating a lens inserted after cataract surgery. A 2-minute laser procedure restored my color-perception 95%.

And whether due to meds, dopamine supplementation itself, or just realizing my time on earth is finite, I seem to have dispensed with filters and fears that kept me from speaking out on issues I believe in.

[Farooqji]

We should not enlist sufferings here. Rather we should share about what we are doing to overcome these challenges. One can easily be getting more frustrated by reading this thread.

[LAJ12345]

For lack of motivation try horny goat weed, full spectrum from planetary herbals, 2 a day on an empty stomach.

vitacost.com/planetary-herb...

For the smell try and sort out any digestive enzymes. My husband used to have the smell and oily back, rosacea, but this has now gone. See my profile for his supplement list. I’m not sure which of the ones he is taking have helped the most for digestion but digestive enzymes and anything that helps bile production, ( possibly the TUDCA in the restore gold) plus the regime for killing bad bacteria and reintroducing good helped (cycling berberine and allimed one week, probiotics the next) and the thiamine for carbohydrate processing.

plus dietary changes: gluten, sugar free, less dairy and meat, lots of greens and colourful veges, no processed food with numbers on the label, no seed oils only olive oil and butter.

Also a good multivitamin . He uses Hardy’s daily essential nutrients.

[narcisa956]

I was diagnosed 1 year ago, and 3 or 4 months ago I actually started to smell a musky smell from my armpits. But the smell disappeared without me even noticing when.............Could it be due to B1 which I have been taking for a couple of months now?

[gwendolinej]

Hi there, welcome to this site. You'll love it. We care a lot for one another.

You mention self discipline. One of the effects of a lack of dopamine can be apathy. There's not enough emphasis on the non-motor symptoms of PD according to a number of people in the field.

Here's our story.....

My husband's first symptom was apathy, diagnosed as severe depression. He was lying on the bed looking at the wall! Then it became Lewy Body Dementia. He then attended The Movement Disorder Clinic at a major hospital here in Australia (thank god for our health system) and saw over a period of a few months 2 or 3 different neurologists. He was on levadopa by then. No change Then, after some discussion between these doctors, they tried the Neupro patch ( Rotigotine). The result was that within a few weeks he was rediagnosed with PD. The difference was amazing. Mentally he was back to normal and has been till about a year ago, when the patch stopped working. His extreme apathy returned and he's spent quite a lot of time lying on the bed with not much interest in anything. He does not have a tremor, but does have bradykinesia and other physical symptoms.

We tried the B1 protocol, but the high dose sent his blood pressure thru the ceiling. He's on 250mg a day for the time being. He's also now taking the drug Xadago, which did improve him a little.

He's on mentholated B12., magnesium L-threanate, low dose B6, folic acid, Neurofolin, and Mannitol. Most of these he's taking because of this site.

He's been on Mannitol for 7/8 weeks and that has been a game changer. He is now very alert, no dizziness or fogginess in the mornings. He's taking an interest in the world around him, he's reading books, newspapers, crosswords etc. we've been out to friends places for dinner. I still can't believe it and keep expecting him to revert.

Mannitol isn't a pharmaceutical as such, it's a diabetic sweetener. It's been found recently to help PD and to possibly restore sense of smell and taste. (My husband doesn't enjoy his food, or drink wine anymore, as he can't taste much).

I did discover recently when he was in hospital that Mannitol used and has been used for many years to treat brain injured patients. Yet most pharmacists haven't heard of it. We sourced our supply here in Australia from the manufacturer. It makes sense, doesn't it, that it's helped my husband. PD patients have injured brains really. It gets thru the BBB (Blood/Brain Barrier) apparently, and maybe helps meds to get thru also.

We are still hoping it restores his sense of taste. That can take some time.

That's our story.....I hope it helps

PS .My husband doesn't have the "garden variety" Parkinsons according to our neurologist. We now see one of the neurologists from the Movement Disorder Clinic privately. We do visit the Clinic every few months as well. Our neurologist likes a second opinion.

Regards Gwendolinej

[pdpatient in reply to gwendolinej]

Thanks for the information and advice. Can you please elaborate on how much mannitol he takes and any side effects.

[gwendolinej in reply to pdpatient]

Hi again. I’ve had a few members contact me and now I’m not sure who I’ve messaged, so if I’m repeating myself, you’ll understand. Here are a couple of sites which will give you some info.

syncolein.com, a supplier of Mannitol. Look at the video, has subtitles and very interesting. That’s the dose we are using, 1tbs of Mannitol in coffee daily after food.

The other was when I googled mannitol and parkinson’s I got another interesting article on parkinsonsdisease.net>mannitol

We’ve had another change I’ve noticed in my husband over the last few days...it’s the Parkinson’s Mask. It’s gone. Still hoping he will get his since of taste back.

Good luck. Keep in touch

Gwendolinej