Do you struggle to keep weight on?

[Rona]

no I have no problem staying at my weight 

[Nancy Crockett]

I’ve had Parkinson’s only a year (diagnosed). I’m as fat as I’ve ever been.

[Jo S.]

I struggle to keep weight on. I have lost quite a bit of weight the past few years and am considered underweight by all standards. One issue is that I have early satiety, so I can’t eat a lot at a sitting. If I do I will be in pain for hours on end. I also have restless legs/body, which doesn’t help matters. I haven’t lost my sense of smell, but I am very sensitive to food odors and seasonings and do best with sweet and bland foods. I have slow digestion and chronic constipation, which add more layers to the problem. For people like me, frequent small meals throughout the day made up of foods I can tolerate works best. My biggest concern is overeating, because that often means I’m too full to eat anything more that day. It’s also a good idea to limit fiber and fat (as these both slow digestion even more).

[Todd Kitten]

Not exactly, but I have lost weight since being diagnosed and although that has leveled off, I’m unable to regain weight that I have lost. I can eat anything I could eat before and still have my senses of smell and taste, but because my stomach contents move slowly (gastroparesis), I’m just not as hungry as I used to be. Unfortunately, the drug they usually give people to treat this aggravate other symptoms of PD.  Also, eating fiber, which helps with constipation, also aggravates gastroparesis. I haven’t found the answer, although I will say that with so many people trying to lose weight, I don’t get a huge amount of sympathy for this symptom! Also, I have read that there is at least one drug approved in Europe that supposedly works well. Maybe it will eventually be approved in the U.S.

[Chris]

Yes, I struggle to keep weight on, I have lost weight gradually over the last 3 years, for unexplained reasons. It is not due to low appetite as I eat well, and I have at least some sense of taste and smell.  Perhaps it’s dyskinesia?  I have heard that it burns up a lot of calories.

 

[Beth T Browne]

I am petite. The most I ever weighed was when I was pregnant. There was a period I was 115 for a while, then 110 for a long while, then in my 70’s I dropped to 100. When I was diagnosed 2 yrs ago, I was 98. I lost my sense of tense last November, and did not eat much. Then it came back. I had lost down to 93 and I thought I would gain it back, but now my taste is not so good any more and I am just not eating right. I take Juice Plus gummies for veggies and fruits, I eat prunes with breakfast, and I have a protein drink 2 or 3 times a week and put collegian in it. I eat breakfast, and have 1/2 cup of coffee. But the rest of the day I eat off and on. Fruit, cheese and crackers, air fry things like sweet potatoes, chicken wings. And some other things. I eat ice cream often, but I can not gain. I have esphogus motilitry problem diagnosed in 2012. The meds no longer are working, and they cannot due surgery as I have a leaky heart valve. So?

[Jo S.]

I have similar problems, Beth. I’m also petite to begin with, and my appetite is limited because I have mild gastroparesis and early satiety. I eat nut butters, nondairy ice cream, dark chocolate, pastries, etc. as well as more wholesome foods. I still continue to either loose weight or not gain. This morning I weighed 87.3 pounds, which scares me. I know I’ll inch back up closer to 90 eventually, but it’s still shocking (and 90 pounds is still terribly underweight). The thing is, I love food and enjoy eating, but my tastes have changed significantly, and the type and aroma of food (and the seasonings on/in it) can  greatly affect whether or not I will be able to tolerate it.

[Beth T Browne]

Good morning Jo. So, so, glad to meet someone who has the same problem and understands. I also eat dark chocolate, peanut butter, pastries (I am crazy about Whole Foods cranberry muffins). I eat those muffins every other morning for breakfast, and also some almond croissants from Trader’s Joe. I use to love food and eating, but not now. I think Parkinson’s has changed my tastes. Things I use to like are just not so good any more. I frankly would probably not eat if I didn’t know I had too. It is just not enjoyable. I notice saltine crackers taste good, and since I need more salt, I eat those. You are under 90# and that doesn’t sound good. Has your doctor recommended anything? My gastrologist recommended FDGuard you buy at Walgreens or CVS, etc. It was suppose to help my appetite, but did nothing. It does not require a prescription, so you may want to try it. I am afraid we are not going to get better since our taste is involved. Let’s stay in touch and share any info we get or try ourselves that work. Have a good day Jo.

[Jo S.]

Thanks so much for your reply, Beth! I haven’t tried Whole Foods cranberry muffins, but I love Trader Joe’s blueberry muffins and banana walnut bread. Sweet, plain, and bland are what taste “good” to me these days. And, yes, plain Saltines fall into those categories. I need salt as well, and plain Saltines check all the boxes. My doctor hasn’t recommended anything, but I will be seeing a new PCP in November, and I imagine she’ll have some valuable suggestions. I haven’t tried FDGuard, but I took IBGuard for a long time prior to my diagnosis as I thought my digestive issues were due to IBS (PD wasn’t anywhere on my radar). Like your experience with FDGuard, the IBGuard didn’t help me. I agree — Parkinson’s has changed my tastes. It’s sad because I used to really enjoy eating and trying a variety of flavors and seasonings. Like you, I wouldn’t eat now if I didn’t have to, which I know is hard for most other people to understand. Yes, let’s stay in touch, Beth! That would be great!