persistent weight loss..: hi, thanks for... - Cure Parkinson's

Cure Parkinson's

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persistent weight loss..

MellowYellowcup profile image
18 Replies

hi, thanks for this page & the ppl on it.

2yrs ago 88kg in the intervening period PD has been confirmed . This morning I weighed in at 70.5kg . I eat x 3 meals a day, have effective BM every second day. Have R hand & L leg tremor. Kinson 100/25 x one tab x 3 per day. My RCA 100% blocked ( collaterals keep me alive) Also have AF. Walk 3 to 4 kms daily.

At this rate of shedding kilos I’ll soon disappear ! Any insights appreciated.

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MellowYellowcup profile image
MellowYellowcup
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18 Replies
Boscoejean profile image
Boscoejean

this is definitely a tough one since it seems that every article on weight gain tells a person to increase calories and protein and suggests dairy, meat and other foods that supposedly are not that great for someone with Parkinson's. Then you also have to deal with spacing protein so it won't interfere with medication. Then other articles in almost the same breath say have a couple snacks in addition to three meals and I then ask myself how do these people expect someone to have more meals and snacks when it is already difficult enough to maintain a schedule of meals that don't conflict with medication

I am adding this link because it really puts emphasis on what I have had to say here because if you go to the part about weight loss what is the first thing it says

Add extras

Add high-calorie foods such as cream, butter or cheese to food where you can

then think of all the articles that say that you should completely cut out dairy if you have Parkinsons

I mean can we get our advice straight here?

so here we have an article on high calorie foods that do not involve dairy however with the ones that have a fairly high amount of protein these foods would still need to be scheduled away from the medications

healthline.com/nutrition/hi...

Nuts and Nut Butters. Nuts are a great source of protein, healthy fats and calories, making them an excellent choice if you're looking to gain weight. ...

Avocado. ...

Quinoa. ...

Tahini. ...

Olive Oil. ...

Dried Fruit. ...

Legumes. ...

Sweet Potatoes.

MellowYellowcup profile image
MellowYellowcup in reply to Boscoejean

Thanks….yes spacing meds+food = pain!!

Quinoa. ...no

Tahini. ...yes

Olive Oil. ...yes

Dried Fruit. ...yes

Legumes. ...yes

Sweet Potatoes. Yes

Will read the article

Boscoejean profile image
Boscoejean in reply to MellowYellowcup

I hope you can figure out a plan and that this goes well

freefallmode profile image
freefallmode

Have you had tests for gut function/digestion? You may like to get your vitamin/mineral levels checked too.

I've struggled not to lose weight for many years. Tests indicate that I have chronic malabsorption of nutrients and an extremely unbalanced microbiome so I'm working with a nutritionist to rebuild it by following an auto-immune/anti-inflamatory diet and adding probiotics shortly.

My PD symptoms improved dramatically within a week, and L-Dopa meds reduced by 30%.

Allypally49 profile image
Allypally49 in reply to freefallmode

I believe its all to do with the guts microbiome but to get an honest genuine, non money con site for guidance is proving difficult.

freefallmode profile image
freefallmode in reply to Allypally49

Agreed. The conclusion I've come to is that if one is going down the probiotic path then it's essential to personalise the bacteria strains to one's own microbiome, otherwise can do more harm than good.

FMT may be an option (albeit riskier) but it's even more difficult to find a genuine, safe and effective method.

Let us know if you find any good solutions!

MellowYellowcup profile image
MellowYellowcup in reply to freefallmode

freefallmode & Allypally49 YES my partner has scoured the world for a King Hit Pro-Biotic

MICROBIOME Labs "MEGA SporeBiotic"

I have only taken them for a few days, and the first change has been less Flatulence in volume and aroma!! That is positive. Our daughter (who has had multiple Antibiotics) her gut was compromised started these probiotics with instant good results.

I will report back. Ciao

MellowYellowcup profile image
MellowYellowcup in reply to freefallmode

freefallmode lined up a Gastro Dr for him to do a viewing (top & bottom). Faecal Blood test negative. Last blood test covered 19 markers and LDL was the only one elevated all others NIL inflammation. Malabsorption to be investigated. Ciao

sunflower_79 profile image
sunflower_79

My doctor prescribed me Fresubin once a day (nutritional supplement for people with low weight). It's work for me. I didn't gained weight, but I'm not losing weight any more.

MellowYellowcup profile image
MellowYellowcup in reply to sunflower_79

sunflower_79 thanks for that, if I dip below 70kg I will pull that ripcord Ciao

MarionP profile image
MarionP

You have medically ruled out other causes such as tapeworm, cancer, nutritional deficiency diseases, heart disease, GI diseases, hyperthyroidism, celiac, Addison's disease?

MellowYellowcup profile image
MellowYellowcup in reply to MarionP

MarionP I will take this list to my next MD appt and hand it over to say "Tried everything else when do we start on this list?" Ciao (( I will say the thyroid is checked every time I have an AF event. Last blood tests ruled CA out at this stage. MRI ruled out MSA (phew) Heart disease is well advanced with RCA 100% blocked, closed over 2017 so every day is a gift. Addison's is worth looking at .... Ciao

PDKiwi profile image
PDKiwi

Hi, I've dropped from 88 to 70 kg in about 4 years but feel ok. Have a low BMI but vitals good. Tremors along with lots of exercise take their toll on surplus fat. Currently looking into berberine, star anise and licorice to improve gut health along with ACV and salt.

MellowYellowcup profile image
MellowYellowcup in reply to PDKiwi

Fellow traveller

Mezmerric profile image
Mezmerric in reply to PDKiwi

À higher fat, ketogenic diet may be worth trying with added MCT oil. A gram of fat has circa 10 calories versus 4 for protein and carbs.

PDKiwi profile image
PDKiwi in reply to Mezmerric

Thanks and yes, I eat a high fat, "ketovore" diet because I've found that too much plant based foods gives me plant toxin-related pain . I find fish, lamb and beef are the best for In terms of reducing inflammation. At one time I was eating lots of supposedly healthy plant based foods like turmeric, cinnamon etc to encourage autophagy but excess phytotoxins resulted in incredible pain.

MellowYellowcup profile image
MellowYellowcup in reply to Mezmerric

Mezmerric

Yes = High fat + MCT every meal + Meat and Cruciferous champions....

Arugula.

Bok choy.

Broccoli.

Brussels sprouts.

Cabbage.

Cauliflower.

kaypeeoh profile image
kaypeeoh

It's hard to respond without sounding snarky. I had left LAD coronary artery 100% obstruction.

I felt that food was sitting in my stomach all day long. I broached the idea of PD being the cause for my stomach not emptying, I was given a "pill" that send messages thru the internet. This showed normal transit time for food. BUT at the opposite end it showed the rectum not opening to let stool out. So the Dx was constipation. I take Motegrity and Miralax now and that seems to keep things flowing but without diarrhea.

So why haven't I been losing weight? When I was diagnosed with PD I went to Dr Google and found one common symptom is weight loss. I thought, Cool! I'll lose some pounds. But it didn't happen. In the three years since the Dx I've gained over 30 pounds.

I go to TaiChi and boxing and Yoga, classes all arranged for PD patients at Hartford Health in Mystic. CT. What I've noticed is the men here are all my age and are all THIN! Except one guy who's a bit younger and has a huge 'spare tire'. A bit younger meaning he's 62 while the rest of us are 68 or more.

BTW, the LAD was cured by endoscopic removal followed by a stent placed. No more cardiac issues in the four years since. Just the weight gain. I don't think of myself as a glutton. Maybe like ice cream and cookies too much. I was a long-distance runner for over 40 years. Averaging running 50 miles per week meant I didn't have to worry about weight gain. But I'm not running 50 miles per week anymore. Maybe that's the key.

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