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    • #17462
      Toni Shapiro
      Participant

      I just looked up food cravings and PD and realized I was not alone and that my desire for cokes, ice cream, junk food,chips and fast foods, that I havn’t had or wanted in many years, was a symptom for some of us. I hate to blame everything on my PD but it is weird that I have these cravings that I didn’t have before. I havn’t been a fan of sugar since the 80’s now… Give Me Ice Cream please.

      I bring up holes in the toes of my socks in this post because it doesn’t seem to warrant a topic of its own.  I was just curious because for years the toes of all my socks, no matter how good, would get holes in the toes.  Even my sketchers that are made of material has holes where my toes are.  I never understood it.  Now I see it’s because I walk on the ball of my foot and my toes lift up.  Am I alone in this strange discovery?

    • #17463
      Mary Beth Skylis
      Moderator

      That’s an interesting observation you made about food, Toni. Come to think of it, my Dad is on the junk food train too. But I thought he started making those choices because he was losing weight (due to PD). But you have cravings? What’s your favorite snack?

    • #17465
      Toni Shapiro
      Participant

      Ah ha! Now I see where I am suppose to answer you… after first sending my response to you to myself lol.I should know this by now.

      I don’t really snack.  I eat snack food for my breakfast lunch and dinner with nothing inbetween. So maybe chips for breakfast or spaghetti if I am nauscous (yeah I know…crazy).  I like things you would never think of to eat when nauscous. I eat olives and big macs and packaged kraft dinner or mr. Noodle or ice cream and bananas or apples and salt.  Does your Dad eat when nauscous too? I can only eat what I crave and keep it down. Did your Dad eat junk food before and is eating more or did it just start?  I can’t believe I drink coke. You are a wonderful daughter Mary Beth.  You Dad is a lucky guy.

    • #17493
      Curtis Nelson
      Participant

      I get holes in my socks as well, but I’m thinking it is because of the way I walk,sliding my feet more than what is normal. though I do have stupid feet, hammer toes,bunions and what not.

    • #17496
      Mary Beth Skylis
      Moderator

      Toni,

      haha! I saw both of them, so don’t worry too much.

      Dad really likes things like Chex mix, lays chips and pizza. And he likes ice cream and chocolate too. I haven’t actually asked him if its nausea-related, but now I’d like to find out. His snacking gets to my Mom sometimes because she’s really focused on health. But I figure, as long as my Dad is healthy and not too skinny, eat all the junk food in the store! Yeah, he always has liked junk food. But it seems like he eats alot more of it now. His drink of choice is gatorade, though. The orange kind.

      I don’t know, Toni. I’m certainly not a medical professional but I try to live my life by giving my body what it wants. And I think, in my Dad’s case, that he can use all the calories he can get.

      Thank you for your kind words, Toni. I feel lucky to have a Dad like him.

    • #17497
      Mary Beth Skylis
      Moderator

      Curtis-

      do you get holes in particular places?

    • #17502
      Curtis Nelson
      Participant

      Holes appear under the heal and the ball of my foot.

    • #17519
      Tina
      Participant

      I had given up sugar and chocolate finally after a whole lifetime of battling those cravings. I suffered from terrible migraines and also used coffee, chocolate and meds to control them. When I went on seizure medicine my migraines came under control and my cravings disappeared to the point of never wanting those snacks ever. Even iced tea and ice cream cravings disappeared when I was put on a dopamine agonist.

      Then I went on meals on wheels where they give you little snacks, including chocolate snacks and guess what—I’m now craving chocolate every night after dinner, so I had to buy a bag of chocolates so I could eat 1 or 2 to satisfy. Only now it’s 6-7. And I’ve added cookies too.

      I guess it’s also what you feed your brain that develops cravings, so I’m going to try to back down on the chocolate and cookies. I have been successful in switching to decaf coffee as my neuro says no coffee. And I don’t crave tea or ice cream.  Anyone who knows me knows that’s part of my very being, and it’s strange that I gave those up after a lifelong history.

      So the only thing I can say is it’s PD, the meds, or both, since my food cravings only changed when I was diagnosed and put on meds. And I think it’s the meds since I’ve had PD symptoms starting 20 years ago, which only worsened about 6 years ago, for which I’ve been diagnosed about 1 year.

      My neuro always says it’s not the meds when I ask her anything about PD, but since the symptoms abate when I take them, I just follow her advice. I do have other medical conditions too, for which I take meds, so it’s kind of a tradeoff of what causes what. That’s why I just choose to focus on the things in my life I can control, to keep happy. I just hope I can get under control the number of items I put in my mouth or fear it may be a slippery slope towards the sugar and chocolate trap.

    • #17520
      Tina
      Participant

      My PD gait has definitely exacerbated my foot problems which affect my spine and neck problems, and consequently my muscles and ligaments in a negative way. So hello fibromyalgia, it’s been a long while since we’ve spent time together. Ugghh. And now my rigor whatever my podiatrist says I have in my left large toe joint is now becoming so stiff and arthritic it’s getting harder to walk. Now I know why I love my Birkenstock style negative footbed shoes. They really help with the alignment of the foot and therefore everything else.

    • #17523
      Lou Hevly
      Participant

      Hi Toni,
      You don’t mention what meds you’re taking, but the agonists (ropinirole, pramipexole, etc.) are famous for provoking compulsive behavior (shopping, gambling, sex, etc.). Even sinemet or its generic equivalents can have this effect. I’m no neurologist, but from what I’ve read, dopamine is a motivational component of reward-motivated behavior. The anticipation of most types of rewards increases the level of dopamine in the brain. So we”re flooding our brains with artificial dopamine, which perhaps has an effect on our desire levels; if normally you have been able to control your desires for certain foods, now with this artificial dopamine flowing, the desires are more than you can handle.

      Eating junk food is relatively harmless unless it gets completely out of hand, but there have been cases where PD victims have lost everything on gambling sprees or have had their marrriages break up over infidelity, and especially the agonists have been shown to be responsible for this.

      As for the sock hole problem, do you keep your toenails short ;-)?

      • This reply was modified 10 months, 2 weeks ago by Lou Hevly.
    • #17530
      Mary Beth Skylis
      Moderator

      Tina – it’s interesting you say that. I’m a coffee/chocolate addict myself. And after a digestive upset a few weeks ago, I stopped eating chocolate (because I only wanted bland foods). And since removing it from my diet, I haven’t had a hankering at all. I don’t have PD, but sometimes I wonder about the addictive nature of certain kinds of food. Salt, for example, makes use crave more of whatever salty substance we’re eating — even after we’ve reached out limit (think about potato chips and French fries). I find this topic very interesting.

    • #17531
      Mary Beth Skylis
      Moderator

      Have you tried yoga to manage the stiffness and soreness? My Dad (diagnosed in 2013) does a little stretching routine every day, and he finds that it helps to manage the stiffness.

    • #17532
      Mary Beth Skylis
      Moderator

      Lou,

      that’s crazy! I’ve never heard about this impulsivity before but it makes total sense. My Dad manages his impulses so they’re not particularly extreme. But he certainly has them. I can think of a few times when I was in the car with him, thinking I was headed to one destination. And then without hardly an explanation, he would change gears and decide we’re going out for lunch. I didn’t realize that could be linked with medications.

    • #17535
      Toni Shapiro
      Participant

      Hi Lou, I appreciate your response.  I have read about compulsive behavious but usually in reference to gambling, shopping or sex so I never thought about it pertaining to food so this is interesting to me. I am on Apo Levocarb and I don’t think it’s one of the medications that provokes it but I will do some research.

      Since my original post I have had a counseling session and after discussing my eating issue my counselor said that it surly is depression, that I am depressed.  All the food I eat are carbs, kid foods, those from my childhood which makes me feel better mentally ….at least for a little while.  So, she thinks I am wanting more serotonin to lift the depression.

      It was very interesting to me as for almost a full year after diagnosis I have been in very good spirits, feeling fortunate that my life has been wonderful up to now and that I have great support, that I could have something worse.  I was very positive and I kept reading that depression was a symptom of PD.  I never understood why I never felt depressed because I had every other symptom under the sun. That said, I had my first breakdown recently when I was calling my insurance company to inform them of my PD.  After the phone call I was shaking like crazy all over and cried like a baby.  It really hit me that this isn’t some research project I have, it’s real and it’s my life forever and it will get worse.  It was the first time I cried or had such intense feelings about it.  It may have been my first true acceptance.

    • #17540
      Lou Hevly
      Participant

      I hear you Toni! Very true, all you say. All I can say is hang in there, enjoy to the utmost everything positive in your life.

    • #17539
      Tina
      Participant

      Toni

      Please don’t feel too bad about getting upset and losing it when having dealings with others. We all get it with PD and there’s a lot of people without PD that get upset.

      I talked with my neuro about it and she said there’s a lot of things going on in the brain, and it’s trying to process it all without having all the chemicals it needs. She said to sit down and try to reduce the amount of things I’m thinking about and it will help me to stay calm.

      I laughed and told her I have multiple master degrees in finance and auditing and used to solve problems  simultaneously while doing a number of other things. Now I can’t talk to anyone about any concern or even pay bills or balance my checkbook on autopay without shaking. It makes me have to refocus myself on something easy so I can calm down. “It is what it is” has become one of my new sayings. I’m very glad I only shake when I’m upset on meds and not all the time.

      My regular doctor said he wondered why my neuro has me only on an agonist and not levodopa. I’m glad though because I’ve read that it wears off and the shaking on the down times is significant. I’m not there yet and can’t predict the future so I’m taking it one rx dosage at a time to see how long it controls the shaking. I feel as long as I can stretch out the effectiveness of a current med by trying to maintain control over my environment and moods, that’s the best I can do.

      I’m a lot slower solving issues but I’m doing what I can when I can. And at my age I figure I’ve earned my spot on this earth and others are going to have to respect that or I just can’t deal with them on their terms. I know I can’t solve every issue without getting upset, but when I perceive I’m not getting anywhere with someone and I’ve done my best to be nice, I just end the conversation and try another time. It’s the best I can do!

    • #17542
      Toni Shapiro
      Participant

      Thank you for sharing this Tina.  I appreciate your support and that of Lou and others. I think whatever it is/was is starting to lift.  Maybe I just needed to let it all out.  I am feeling much better. Filling out those insurance forms made it all so real, so final.  Anyway, I havn’t craved a coke all day LOL!

    • #17543
      Tina
      Participant

      Toni, yeah this forum is great. It helps to vent with those that can truly understand. And it gives our family, friends and caregivers a break from our comments when we’re not at our best.

      I go online for info and to listen and vent. I see my neuro once a month to complain lol. I pray and meditate as often as I remember to, at least daily, which alleviates stress and keeps me humble and grateful.

      My eyes are shot so I don’t read anymore, but I do listen to a few things, mostly the audio Bible and some music. My brain just gets a headache trying to listen to unfamiliar words like stories in books. I do like to watch funny videos, as tv subjects can get boring, immoral, obnoxious, or depressing.

      I just can’t believe that 6 years ago I was investigating financial crimes, developing felony cases and writing ongoing hundred page reports for the 40 cases in my head and files. I also conducted seminars and published articles. I traveled all the time, and now I get lost in a previously familiar airport, and don’t discover I’ve left my bags there until I’ve arrived home.

      Whatever neurotoxins my generation was exposed to is truly criminal. Sorry if I mispell some words, I’m having trouble remembering how to spell and compose correct sentence structure. I used to be a grammar teacher and editor, as well as a writer!

      Well I hope this is not to distressing to others here that I’ve shared all this. I was hoping to connect in a group offline. My PD group meets only once a month for an hour with about 20 people, so it hasn’t been much of a help to me—except to see there are others far worse than me, so it keeps me grateful.

      Most of the people with advanced cases are far older than me, and the fact that they attend is upbuilding in that way.  It’s just the program is designed as a speaker type info session, with no real interaction between attendees except the few minutes before and after.

      This forum is accessible 24/7/365, and I consider it a God send. Otherwise I think I’d be stuck in front of the tv too much. I thought of starting a blog, but I know it’s too much to manage. I’m looking for encouragement, not more work!

    • #17546
      Linda
      Participant

      Toni, I was interested in your comment about foods that you eat when nauseous.  I have been experiencing nausea since starting sinemet.  I am currently on 25/100 3x a day and carbidopa(25 mg) 2x a day supposedly to help the nausea but it doesn’t seem to be helping.  I also have been experiencing orthostatic hypotension which I understand can be a side effect of levodopa.  Symptoms seem to improve some by late afternoon/evening.

       

    • #17547
      Tina
      Participant

      Linda

      I don’t know if it would work for you but when I start a new med or dosage and get nauseous I eat saltine crackers and water. It coats the stomach and absorbs acid. I also eat a flavor of jello I like and it helps. Sometimes it’s bad and I can only eat a few bites but it helps. Then homemade chicken soup.

      It’s weird that stuff they give you in the hospital works but I guess that’s why they do it. Of course after the nausea’s gone I can’t stand these foods. But I always keep them in the house and the soup in the freezer as I don’t always know when it’s going to hit. Mashed potatoes works too and sometimes applesauce and oatmeal.

    • #17549

      Tony, thank you for sharing your experience with becoming overly-emotional…..my husband has handled his diagnosis much like you – in good spirits and thankful it wasn’t an even worse diagnosis.  He is on no medications at this point (he was formally diagnosed almost a year ago).  However, he also finds that he is more emotional than usual – a sad event on TV can be enough to kick this off.  I therefore think that, with or without medication, this is a trait of Parkinson’s.  He does not feel that he is depressed in any way.  He says he realizes that he has to make adjustments to certain activities etc. that he once did with ease – now he has to compensate but it still doing them.  This forum is a God-send for people to communicate with others that are experiencing the same illness – it is difficult for the outside world to totally identify.  We are so glad we discovered this resource!

       

       

    • #17551
      Mary Beth Skylis
      Moderator

      I’ve really come to value this forum as well. Though I don’t suffer from PD, myself, my Dad does. And he feels as though sharing too much about his diagnosis can be burdensome. I think that I like to listen to what everyone has to say on this forum because it gives me a window into his life, but I don’t have to pry.

      I had no idea that nausea was a side-effect of certain medications. But my Dad does get cautious. He says it usually lasts for about 20 minutes and then it’s gone. But he doesn’t want to take any more medications than he has to, so he doesn’t take whatever his doctor prescribes for this symptom.

      He eats lots of junk food too, but he has always had a bit of junk food tooth. So, I never thought twice about it. And it seems to me that he has gotten more sensitive over the last few years. But I figured it was because time is slowing down and there’s more space in his life to think about the details. I didn’t realize there could be physiological things occurring that are changing all of these things.

      So, thank you all for being kind and brave enough to share your experience. It has given me a lot of insight into my Dad’s day-to-day life.

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