putting on weight

[Emma_W]

Hi everyone!

Just wandered if anyone has had any luck putting on weight?

My husband is so thin, he looks really ill because of this, he struggles eating a lot because his medication stops working.

Has anyone else had the same issues?

thank you!

[Boscoejean]

yes- my husband was losing a lot of weight- one thing that has helped is taking digestive enzymes also being treated by a GI doctor for digestive issues like SIBO or GERD also ginger lemon tea has been helpful

[Allypally49 in reply to Boscoejean]

My WWP in the UK has seen dietician twice but they say she is eating the ' right' things she just has to eat more.The never mention SIBO or the GERD approach perhaps its not in their remote to do so.

I'm a great believer in that it starts from the gut etc,

What digestive enzymes is you GI doctor recommending?

[Boscoejean in reply to Allypally49]

GI doctor had him take Align probiotic and naturopath suggested bromelain and papain and the digestive enzymes he uses are plant enzymes -"LACTASE, PROTEASE, PAPIAN, AND BROMELAIN: This product's combination of enzymes assists in the breakdown of fats, fiber, proteins, and carbohydrates, thus optimizing the availability of nutrients in the food you eat.*

[fnedorez70]

Hi, Emma_W. I used to lose lots of weight no matter what I ate. After I had FUS PTT procedure done at Cornell University my metabolism is back to normal and I gained weight. I also became less sensitive to the animal proteins. All of these happened after the second procedure was done. Unfortunately these are very few good things I can report and there are many bad things too that happened after PTT clinical trial.

[eschneid in reply to fnedorez70]

friedorez,

not trying to hijack this post, would you mind telling us what was bad about the PTT-FUS clinical procedure in your case thanks.

Eric

[fnedorez70 in reply to eschneid]

Balance issues, voice issues, I am not as sensitive to the cd ld as I used to be. Occasionally I am not having a good night sleep. I am drooling a lot. I have some other issues but I think you got the idea. I never should have done the second procedure. I was quite happy with the result after the first procedure. I don't have tremors and I thing that the weight loss is related to the mitochondria issues.

[eschneid in reply to fnedorez70]

Sorry about all the new things you are now dealing with. Did they tell you these would be short term and resolve themselves in a month or two?Was this part of the PTT clinical in NY with Dr. Kaplitt, thanks fnedorez.

[fnedorez70 in reply to eschneid]

Yes, it was the clinical trial and nobody gave me any assurances. I do pt twice a week for almost three years. It really helped after the first procedure but not so much after the second.

Felix

[lenamm]

I lost a ton of weight because my extreme tremor burned so many calories. My doctor put me on mirtazapine which helped. I've had brain surgery twice and now I have about 15 extra pounds on me so it is no longer an issue but maybe check in with his doc about mirtazapine.

[Boscoejean in reply to lenamm]

It sure does seem like tremors burn calories

[Youngoma in reply to Boscoejean]

Agree tremors do burn calories. Same here

[Esperanto]

Very relatable and likely for most of us, weight loss is part of PD due to increased energy expenditure as a result of the disease symptoms such as tremors, stiffness, and dyskinesias. In my first year after diagnosis, I could eat whatever I wanted, but I lost 15 kg, despite relatively mild symptoms. Initially, I found it pleasant, but it only stopped due to an overall improvement in all PD symptoms related to a diagnosed vitamin B6 deficiency and imbalance in B vitamins. Now that it continues to progress, despite a stricter MIND diet, I am experiencing weight gain and I'm almost back to my original weight! A favorable sign, but not entirely intended…

Two symptoms that are almost back to normal are severe constipation and sleep deprivation, seem to have a significant impact on appetite, but also on your gut flora. Perhaps it's a good idea to pay extra attention to those aspects?

[fnedorez70 in reply to Esperanto]

Esperanto, do you move as much as before? I used to start my day with 1 mile walk on the treadmill. I had to stop it because I fell couple of times. I believe that this contributed to my issues

[Esperanto in reply to fnedorez70]

I actually move even more because it has been proven to help limit my PD symptoms, not only because of the physical exertion but also as an anti-stress measure. Fifteen minutes of hiit/flexibility exercises, fifteen minutes of Qigong, and 8.000 steps per day outdoors is the foundation. I vary this with gardening, swimming, and cycling due to the limiting peripheral neuropathy. Nevertheless, I still have to watch my weight now!

[LAJ12345]

I keep telling my hubby I’ll put him in Lycra and he looks like a Tour de France cyclist! Maybe we all have a distorted view of normal. Those cyclists are young fit and healthy and are skinny as!

[Buckholt]

Two things helped me. Firstly don’t avoid food in the daytime. It’s tempting to fast around medication but make sure he has something that is low protein - salads, soup, mushrooms on toast etc. Secondly, if he stops medication , or has a long window in the evening, make sure he crams protein , meat, fish , nuts, eggs .

[Nikkiheat2]

My husband was doing really well at gaining weight until he had Covid. Now it has been a slow climb back. Tracking daily calories and keeping a food log helps, as well as having a lot of easy to digest and well cooked foods, like smoothies and stews.

[Buckholt]

One thing I forgot to add. I had a problem last year, and I began eating less and less around my meds until I stopped eating all together. I became convinced that it was not helping me and I had to desensitize myself once again to food and so began reintroducing food , and slowly but surely the effect of food has reduced.

[Eryl]

I wouldn't worry about his weight as much as I worry that he is getting adequate nutrition. If you want to fatten him up feed him grains like they do with cattle to 'finish' them before sale or like they do with geese to produce foie gras, but that wouldn't be healthy for him and would probably make his PD worse. what he needs is more protein and fat which provide calories without increasing harmful triglycerides which are the building blocks of body fat and cardiovascular disease. The most nutritious food to eat is meat and fish (especially oily fish like mackerel and wild caught salmon for the omega 3 forhealthy myelin) with a little veg especialy dark leafy green veg which has a lot of vitamins and minerals. and sea kale for the iodine which is needed for healthy nerves.

[puretone]

Mirtazapine can be effective with anxiety, insomnia and weight loss. My partner tried it and it seemed promising. She started to eat like a horse but unfortunately side effects made it impossible to continue. But if it can be tolerated I'd expect to see weight gain.

[gingerj]

I found that I lost weight when I started taking amantadine for dyskinesia. It is a side effect of this drug. I find it difficult to put weight on even though I eat loads

[Nuthatcher]

I was losing weight quite quickly and my husband was concerned because it was my muscle mass that was shrinking. I know this doesn’t sound like a healthy way to “fix my problem” but it has worked. I started just eating whatever and whenever I want. I eat Ben and Jerry’s,mega chocolate chip cookies. Chocolate cake!! I also work out with weights at the gym. I haven’t gained much if any weight but I’m not losing any more.

[Jana86]

I am a bit over 20 pounds underweight as a result of out of control tremor and a few months on Amantadine that caused anorexia. I also had heart surgery in October and went to cardiac rehab where they had a dietician as an integral service. (Wouldn't that be helpful to all Parkinson's patients?) She was quite clear that the priority should be to regain at least 10 of the 20 pounds and told me to eat whatever and whenever I felt like it. (I have all the issues named here: constipation, nausea, poor performance of C/L, as well as muscle loss). Food really became an aversive for awhile.

It is very difficult to regain cardio, protect muscle mass, and gain weight...I have stabilized and I am no longer losing but this is really difficult. I think my only hope is DBS to quell tremor and regain the calories that are lost by many hours a day of severe tremor (bilateral).

What has worked to stabilize: small, frequent meals; use the MIND diet plan to be sure that I am eating enough variety and meeting basic nutrition needs; supplementing to offset both B12 and D3 deficiency; yoga, light weight training, very slowly increasing cardio focusing on duration ans not intensity (think walk, not jog or run). I hope that is helpful.

[catodd]

check out “Kate Farms” peptide drinks in the US: high nutrition, helps with weight gain, expensive. But on the website, they have info on how to present to your doctor for a prescription, and a form he can use to apply to your insurance so they can cover costs. Helped me through rehab for broken hip…

[pearlette]

The best sources of natural bromelain and pepain are pineapple and papaya. A smoothie with chunks of these fruit with a bit of fresh ginger and avocado pulp with breakfast without any added sugar will fix gut mobility,absorption and constipation.

Start with small quantities ( blend fresh) and gradually add berries, melon etc.; perhaps a banana. Gradually increase to 2- 3 times a day. Give it 3 weeks and you will see a difference in appetite.

Then you go in with suitable easy to digest protein. Eggs, Greek yoghurt, clear soups . Dont rush it .

When energy increases , encourage some limb exercises while sitting and increase gradually. The weight may not increase much but the loss will stop.Then work on building muscle.

Slow and steady

[kaypeeoh]

When I was diagnosed with PD my first reaction was to 'google' it. There I learned that a common sign is weight loss. I thought, "Cool" I'll get back to my high school weight! but no, in the past 3 years since the Dx I've gained over 30#. Why is weight loss so common? My guess is nerve disfunction that makes everything taste bad or at least not good.

I needed a prescription for corneal disease. I used an eyedrop that shut down my ability to taste sweets. For my birthday my wife bought a German Chocolate Cake. My favorite dessert. I tried and tried but every bite made me vomit. I only needed the drops for two weeks but I lost 20# in that time.

Then I shattered my jaw in an accident. Too many fragments for surgical repair so the doc wired my jaw shut. For three months I lived on liquids, and lost a lot of weight. Once the wires were removed I worried I'd regain all the lost weight so I took up jogging. Within a year I was running marathons. After the accident my weight dropped to 150#. When running every day I kept my weight around 160#. But now I'm 210#.

In the past I tried a lot of things to try and moderate my weight: Fasting, meditation, low carb eating, etc. I worry that because of PD medication--Rytary--I don't seem able to stick with any of those modalities. One of the side effects of Rytary is over-indulging in gambling or porn. So my eating might be the same side-effect? If so , stopping the medication might be the only option???

[drumhead]

Hi Emma, Is marijuana legal where you live? It can be a great appetite stimulant as well as a relaxant. However, it can affect people differently so if you to decide to try it start light (and follow your doctor's/rx directions). You can get it in gummy form as well as many other forms these days. Also, the good old fashion protein shakes with ice cream or even Ensure type drinks if they are appealing can help add calories and nutrients.

[pdpatient]

I have the opposite problem 😂. Always hungry and difficult to lose weight!!

[Fava-1]

try making sourdough bread and toasting it thin sliced with butter on it. yummy

[HugoRipanykhazov in reply to Fava-1]

I have become almost addicted to whole milk greek yogurt recently when my trousers started al falling down with what I presume is the weight loss and I am wondering how bad it (and what you describe as fried bread) can be for us?

[luckyrock]

I too was losing weight even though I don’t have a tremor. I knew I didn’t look good but despite having a good appetite and eating as much nutritious food as I wanted and having dessert every night I was not gaining. Medicare does not pay for nutritional services, only if you have diabetes or cancer. I met with one covering it myself and with her not charging for all of the time she spent with me. I then had DBS surgery in May and gained 10 pounds in 6 months, an unexpected benefit.