Parkinsonism: I was diagnosed at 47 I'm... - Parkinson's Movement

Parkinson's Movement

17,749 members17,800 posts



I was diagnosed at 47 I'm now 55 the doctors were baffled with my symptoms and couldn't come to a diagnosis until I was seen by a professor in UK and diagnosed me with inherited Parkinsonism, which includes dystonia and other stuff. I'm struggling a bit now with my food my tummy seems very bloated and don't know why can anyone help me out, I eat little but frequently because if I eat a lot I get sick.

18 Replies

I also had that diagnosis at one time, my ins would not cover as they told me "ism" meant " of an unknown cause" when the "ism" was removed at my new movement and disorder clinic my insurance paid.

I have had Parkinson since 2002, so the things I list is what has worked for me that is my disclaimed and of coarse always ask your doctor before using supplements.

I use a Vit -b complex daily and it has help me a lot, as for your food issues that is the Parkinson puzzle, I would say check the amount of red meat and protein you eat, like eggs, etc. Protein messes with medicines, read up on your meds , it could be as simple as timing your meals between meds. Would mint tea help or a juice? I like tomato juice and drink in small amounts do to the acid. You could have a gluten problem ( which is a huge problem in its self) also make sure you are regular in the bathroom-- keep the junk in your trunk cleaned out. Good luck and God bless.

R8360V in reply to Kadie57

Hi Kadie57, glad you are controlling it, at the moment I think I've had a bit of downfall, I was doing very well for a whole year and now all of a sudden I feel I've gone down a bit, hope it doesn't go any further. And yes you are right mine is Parkinsonism plus the inherited one but they classify it as parkinsons and full stop.

I am 52 was diagnosed with PD at 48. My symptoms were baffling too. So now the movement dr dropped PD. no diagnosis yet. I struggle with chocking on liquids and saliva. I do not have the stomach issues. I also have dystonia type symptoms. Could it be dystonia with stomach muscles?

R8360V in reply to Chaylu

I myself saw many doctors and none of them said it was parkinsons but when they gave up they sent me to a specialist who in return did all kinds of test and none were conclusive so at last he decided to do a genetic test and there was the result, I had the gene mutation of Parkinsonism but it took them about 4 years before coming to the final verdict.

Parkinsons in many cases is linked to gut problems. There are many studies currently being undertaken to understand why. See: I've had many problems with my gut starting with celiac disease and also diagnosised with IBS in early days. I have found that a low inflammation diet such as what celiac patients eat is when I feel the best. No sugar, no alcohol, only organic chicken and grass fed beef, selected vegetables (green vs. those high in carbs) work best and limited to no grain, rice, gluten. Tough to do but when I don't, my symptoms are worse.

dumpelkin in reply to karolmilk

For some reason, that link didn't function. Let's try again:


I had such a lack of appetite that i lost 70# and looked like a skeleton since Im 5'8".

I could not smell or taste anything, and who wants to eat when they're depressed anyway? i was also constipated, someone suggested enzymes, so I purchased a bottle of Betaine for the stomach with pepsin, and other enzymes to move the BM. I don't have to take it everyday, but its one I can check off my list of problems. I am starting to gain weight, so I'm a 'happy camper'

I only took 1 tablet with the meal of the day that had the most protein (midday for me) and it breaks down the protein into the usable amino acids, making sense for us PWP,

right? cause that's whats in the brain.

Hope this helps

Goin' for the cure,

Susanne of CA

karolmilk in reply to Hidden

I also use a supplement to help with digestion that has Betaine HCL and Pepsi-(SpectraZyme Metagest by Metagenics). My doctor suggested and it helps. I also take a probiatic and natural anti-fungal (grapeseed extract) because I am plagued with candida overgrowth due to slow bowel movements in intestinal tract. And, as I said I eat a low inflammation diet. Bloating could be caused by a candida overgrowth in gut which can be a problem with Parkinsons.

When the Autonomic System is impaired, many things can pop up as you are describing. ie: I can sit down for dinner and take three bites and be totally full. The term for this is "Early Satiety".

To help you and others along your 'discovery' path, I created the 'Symptoms List' which is the most complete of its kind. This offer is open to anyone.

Email me at: I in return will send you an Excel sheet

covering over 100+ symptoms. At the very top in the subject area: Symptoms

When you receive this, please share it with others.


If you eat kess, then you might lose weight. Be careful about keeping track of your weight. My husband lost too much because he couldn't eat a,full portion now having trouble trying to regain pounds. When his stomach got too full, Dr said it was a,"motility" problem related to PD and prescribed a med to help move his digetive process along. It did help.

Hi there,

Maybe I can help, I work at UK with PD patients.

Email me please,

Exclude any constipation and ensure your fluid intake is adequate. Small regular meals only. The gut is your second brain and in some people the theorie is that the parkinsonisms starts in the gut. The fact that you also have dystonia as a main symptom could mean your abdominal muscles being affected by dystonia and when you eat the dopamine charges to that area to help break down foods and surging can cause ON dystonia hence the cramping and pains

You may eventually be diagnosed with Parkinson's disease. Until then, I would recommend that you apply for disability insurance. You may qualify for it now but would not after you have been diagnosed with Parkinson's disease.

Beckey in reply to AlabamaDoc

Why would that be, Doc?

AlabamaDoc in reply to Beckey

When applying for private or group disability insurance, I would think you would have a better chance of being able to qualify and then purchase the insurance if you don't have a chronic disease diagnosis already. Once you have the insurance and you are making regular payments, then you should have a better chance of actually receiving disability payments in the future if you are actually diagnosed with Parkinson's disease and are no longer able to work. If you wait until the diagnosis of Parkinson's is given, I think it would be harder to qualify for any private or group disability insurance at all. Of course, this is just my opinion and I don't represent any insurance company. I am just trying to think of a helpful alternative to all the stories I read of patients being unable to work and having no source of income after the Parkinson's has progressed to the point that they can no longer work.

Do you have to use the patches, as I've become swollen since starting them?

Look at the research of Dr Filip Scheperjans on Parkinsons and gut bacteria.

I have had Parkinson since 2012 i need advice about how to leave with parkinson

You may also like...