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    • #17655
      Mary Beth Skylis
      Moderator

      My Dad (diagnosed in 2013) always jokes that he has a set of “skinny clothes” and he has his “normal clothes”. As someone who has battled illness for a lifetime, his strategy is intended to manage substantial changes in his weight. Before he underwent DBS, he was really skinny. Despite having a hefty appetite, his exertion levels were much higher, leading to weight loss.

      Have you lost weight since the diagnosis? Has your diet changed? How do you manage constant exertion?

    • #17974
      Marcus Sutherland
      Participant

      The Opposite happened to me, I was diagnosed 4 years ago probably because I quit working and my medication keeps my tremors under control.

    • #17979
      Jo S.
      Participant

      Yes, I’ve lost weight. My “normal” weight is around 105 pounds (I’m only 5 feet tall). I now weigh 95 pounds. Although 10 pounds may not sound like a lot, on a very small person, it’s the equivalent of what would be a whole lot more on a larger person. I don’t have any more weight that I can lose. At my previous MDS appointment, I weighed 98 pounds, and at my appointment yesterday, I weighed 95, so my weight has been gradually going down. I try to eat as much as I can, but my appetite isn’t all that great, and if I eat too much, I feel bloated and sick and can’t eat the rest of the day. I try to graze throughout the day and have several smaller meals, and I don’t avoid fattier foods (although too much of them at a sitting will make me nauseous). It’s a battle, because I do like food and enjoy eating — but food doesn’t like me back. I have enough energy (most of the time) to exercise regularly and do Rock Steady Boxing. But I also have sleep problems (as do most/many people with PD) and excessive daytime fatigue, which doesn’t help my energy level at all.

    • #17995
      Mary Beth Skylis
      Moderator

      Marcus- do you mean that you’ve gained weight since the diagnosis?

      Jo- I think my Dad struggles with the same balance. He tends to eat lots of junk food (which he was fond of long before the diagnosis). Luckily, my Mom and sister are very health conscious and also come up with ways to put healthy (yet dense) food into his sights. Have you found that certain foods irritate your stomach more than others? And what are some of your favorites?

    • #18000
      Jo S.
      Participant

      Hi, Mary Beth. I’m very health conscious, too, when it comes to my diet. I’m vegan, so my favorite foods may not be suitable for your dad. Foods that irritate my stomach/gut are raw garlic (or a lot of cooked garlic), raw onion (or a lot of cooked onion), and anything that’s really high in fiber (as that slows my digestion down to a near halt). I love vegan ice cream (it feels so soothing on my very dry throat), but it’s not a health food, so I try to limit how much I have of it, though I do have a little bit almost every day. In terms of soothing foods, I like mashed potatoes (with vegan butter), tomato soup (made with V-8 juice) with rice or rice noodles in it, pasta (especially with vegan pesto), rice with cooked veggies and tofu and a sauce, nuts/seeds (pistachios, almond, cashews, sunflower seeds) and nut or seed butter (such as peanut butter, almond butter, and tahini), hummus and crackers, canned beans, well-cooked kale leaves and other dark leafy greens. Raw foods tend to be harder for me to digest, so I limit those or have very tender raw items (such as butter lettuce), which seem to agree with me better (and go down more easily). Higher-fat foods for me typically are the nuts/seeds and their butters, vegan butter, vegan mayo, and vegan ice cream — but these must be eaten with discretion because fat can interfere with medication uptake and also slows digestion. Every day and every meal is a bit of a juggling act.

    • #18027
      Jacque Walston
      Participant

      I have not lost weight, but gained. Not too much, and it seems to have stabilized. I gained about five lbs, but I attribute it to nervous/depression eating as I adjust my life living with Parkinsons symptoms. After six years of no apparent progression, I now feel clumsy as my fingers move awkwardly like fat sausages, making fine motion impossible, and handwriting poor. I don’t so much walk anymore but lumber along being careful of my balance.

      I would say go for that ice cream. Why hold back when you NEED the calories and enjoy it.

    • #18036
      Jo S.
      Participant

      Hi, Jacque! Thanks! I do indulge … I just don’t want to fill up on ice cream in lieu of other more nutritious foods, especially because I have a limited appetite and get full very quickly.

    • #18046
      Mary Beth Skylis
      Moderator

      Jo – it sounds like you have a very balanced and nutritious diet. I think I could convince my Dad to eat many of those things. And my little sister airs on the side of vegan so she’d probably love it too. I know for sure that he loves ice cream. I doubt he’d notice if there were no cream in the ice cream 🙂

       

    • #18047
      Mary Beth Skylis
      Moderator

      Jacque – have you found that the things you like has changed since being diagnosed?

    • #18060
      Jo S.
      Participant

      Thanks, Mary Beth! Let me know if you make any headway with your dad with any of the foods I mentioned. It’s cool that your little sister is leaning toward vegan!

    • #18131
      Mary Beth Skylis
      Moderator

      Thanks Jo! I will. I can also say that he underwent DBS last Fall. And since the surgery he put on 20lbs, which everyone was a little relieved about. So, his tendency is to drop weight but something about the surgery helped him stabilize.

    • #18260
      Laura
      Participant

      Hi Marybeth, I had the same experience with my weight before DBS surgery.  I was never overweight, 5’4” and about 125 lbs give or take a few,  but always carried an extra few pounds in the thighs and places I could never loose, but then after years of struggling with PD, and always having to exert so much more energy to do anything, my body started to use it’s stored fat for energy, melting away pounds, my weight was dropping to 110 and below, which I hadn’t been in over 30 greasy. Then 3 years ago I had DBS surgery, and my doctors did not stress the possible effect it could have on my eating habits and weight gain.  After about 6 months, at my doctors visit, I had already started putting on weight, I asked what was going on, the surgery had changed how my brain perceived hunger, I never felt satisfied when eating, my food intake increased, I craved sweets and ate more. I’m not sure if the doctors had stressed this side effect if it could have helped,being aware from the beginning, I’ve put on an excessive  amount of weight that I don’t ever think I’ll loose, just something else to deal with.

    • #18266
      STEVEN OPPEN
      Participant

      I have lost about 20-30 pounds off of a 180 lb. frame (only 5′ 8″). Actually, I’m very happy about the weight loss – I’m staying at the 150 lb. level, which is much healthier for me. I had some concern that, as I came down in weight, it seemed that it would never stop, but stop it did. When I asked my neurologist his thoughts on why I was losing weight, he attributed the majority of it to my dyskinesia ! And he may be right. Apparently, it takes a fair amount of calories to “bob & weave” all day long. But I’ll take the quirks of dyskenesia any day of the week over the horrible “off” periods that I can encounter if my Rytary doesn’t work properly.

      Be well,

      Steve

    • #18283
      Mary Beth Skylis
      Moderator

      Laura,

      has the weight gain been an unwanted side-effect for you? In my Dad’s case, he was looking really skinny before the surgery. So, I felt quite relieved to know that he gained some weight. But I’m wondering if it’ll eventually stabilize or return to how he was before the surgery.

    • #18284
      Mary Beth Skylis
      Moderator

      Steven,

      I’ve wondered why weight loss happens in PD, too. And dyskinesia does seem like the most probable cause. Do you feel strong and healthy despite the changes in weight?

    • #18309
      Laura
      Participant

      Marybeth, no my gain is excess of what I would have wanted, it seems to have leveled off now, but the extra weight remains and can’t see ,losing it.

    • #18319
      Mary Beth Skylis
      Moderator

      Laura, that sounds like a frustrating side effect. Have you discussed that symptom with your neurologist at all?

    • #18570
      Robert Harris
      Participant

      In high school, I was a macho meanie. Six feet one, and intimidating everyone by hulking around at 179 pounds. Okay, the macho part is a lie, as was meanie, intimidating, and hulking. Actually, if you think about a 179 pounds hanging off a 6-foor frame,  you will more than likely think, “string bean” instead of “nightclub bouncer.” Then I went to college and graduate school and got some jobs and finally ended up at 220 pounds, somewhere in the 1980s. Many years after that, I stabilized at about 199 pounds, and went through two careers at about that weight. Then, in just the last, maybe, six months or so, I  have been losing weight. Earlier this week, I was down to 182.  My levodopa and rasagiline doses are the same (have been for several years). The only things that have changed are the addition of a Neupro patch and the addition of magnesium citrate and docusate sodium, both designed to improve the waste elimination of processed food. For me, they add some help, but are not the greatest thing since bacon-wrapped filet mignon.

      Speaking of bacon, I have a dilemma to submit to you. My weight loss has my wife worried. And I mean worried. Usually I get three or four slices of bacon once a year. In this past week, she has made me two bacon sandwiches of six slices each. She has cooked beef, and dropped that fake hamburger stuff. And tofu–you know, those little white pencil erasers–has disappeared from the menu. I mean, Paradise has seemingly arrived early. Corned beef hash, which used to be contraband in our house, can now strut around and smirk, just before I dump it into the frying pan. My wife allows all this and more because, she says, I need to gain weight.

      But  here is my dilemma. I just weighed myself and I am now crushing the floor at 186, up four pounds in a week. If I tell her, will she toss the bacon and put a lock back on the hash? We haven’t discussed what my ideal weight should be, so I’m rather skittish about bringing up the subject.

      So, that’s my tale. I don’t know what exactly is  causing me to drop pounds, but I suspect it might be the intestinal fortitude meds.

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