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About Annemarcel

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    Biking, sewing, reading, watching silly movies with my family.

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  1. Annemarcel

    Insulin growth factors

    My husband found an article about how insulin growth factors might be a more likely cause for brain disorders than protein aggregates. This article is very interesting but I don't understand all the science behind it. It mostly deals with Alzheimers but it also mentions that Parkinson's patients benefited from the study. https://theconversation.com/alzheimers-disease-why-insulin-is-a-new-suspect-97222 This seemed timely for me because last weekend (our daughter's wedding) was busy and stressful and I wasn't able to keep a regular diet. We weren't in a place where we had access to decent food, just refined carbs and lots of sugar. I didn't test myself but I could tell my blood sugar levels were all over the place. I'm not diabetic but I probably should get it checked. Sunday rolled around and I was having a lot of trouble moving and it lasted into Monday. From that experience, as well as my previous food diaries, I was able to connect the dots and realize that sugar had really taken its toll on me. I have always had a hard time avoiding breads and muffins and it makes me wonder how much insulin has really affected my brain. Do you think this could be a possible cause of Parkinson's?
  2. Annemarcel

    Medication/Food/Symptom tracker

    I've been looking for something that will help me track how food and medications are affecting me. I really want to know specifically how different foods affect my symptoms, and I also need to be better prepared for when I have my MDS appointments. I appreciated Mark Comes medication schedule in the Pharmacy forum, but it doesn't take into account what I'm eating and how I'm feeling. After months of scouring, I decided to take his and expound on it. So far, it's been nice to print several out each day and have them in different parts of the house so I don't have to carry it around with me. I'd like to share it here in case anyone else might find it useful but I'm not sure how to do that. Any techies out there willing to instruct me? I created mine in Google Sheets but I've also got it saved as an Excel file.
  3. First of all its nice to find old posts that help me know I'm not isolated and alone in this parkie thing, I could copy almost everyone's description and paste it here. Why some mornings it takes forever for meds to kick in is a mystery. Is it my sleep (or lack thereof), what I ate last night or just PD being indiscriminate? I rely on caffeine along with Sinement and Mirapex to keep me going through the day. I'm sure the caffeine adds to my sleep problems but sometimes you have to choose. Do I want to move now or sleep later? And after years of experimenting on myself, I can't drink carbonated soft drinks without feeling deep muscle and joint pain in my back and legs. Green tea and caffeine pills are ok. Maybe its the phosphoric acid or food coloring I work hard to stay cheerful and remind myself that things could be a lot worse. People seem to be amazed when I talk about PD because I treat it like an inconvenience. But they don't usually see me when I'm off, or feeling discouraged because I'm slow or stiff or bone achingly fatigued. So my day is starting again and I'm waiting for things to kick in. Dang. I've got places to go and things to see.
  4. Annemarcel

    Lurkers? Past posters? Where are you??

    New Normal, what a nice reply. Most often I post not expecting a reply from anyone because like noworky and Christie, I sometimes feel like I'm on the outside looking in. But no worries. Its in situations where I feel awkward that Im introverted. I actually love meeting new people and sometimes its fun to start a random conversation with a complete stranger. But as for the forum, I'd like to think that it does morph us into one big family, posters and lurkers. It helped me a lot before I decided to post to see other people dealing with the same issues I was. I hate being slow and rigid. It really cramps my style. I'm not done being active and creative, but I really have to schedule my chores and actives around my medication schedule. and my fragmented sleep can complicate things. Being tired seems to cancel out my meds like matter/antimatter. (I'm a nerd) Stress and hunger (low blood sugar) make things worse too but I think that's true for most PWP. Its cool you think I'm a young mother. I'm a young grandmother - 53. The kids in the photo are two of my four grandkids with another due this month. DH and I raised six kids (four are married, two have kids and two are still single) but they've all moved out. *whew* Yes, I understand. Same here, in Provo. I have a sister in Gilbert who moved last year from Mesa. Where are you? I had no idea that message came up for my blog. I'm pretty cheesed off about that. No, you're fine.. Its harmless. Its not about PD although I do talk about it. I posted a thread on here on the YOPD forum called My Facebook Post when Robin Williams died. This has been a good thread. Its given me incentive to throw myself back into the fray.
  5. Annemarcel

    Lurkers? Past posters? Where are you??

    Hi, I'm Marcie and I'm a lurker. "Hi, Marcie". I don't purposely avoid posting, I'm just an introvert and very busy. But I find myself coming here for info all the time. I can follow the logic - I need to be more vocal. Because if I'm looking for help, support and info, others are too. Even if its just to say, "I know what you're going through." fyi, I have akinetic rigid Parkinson's. Moving around and balance are big problems for me. I'm currently taking sinemet and mirapex, and caffeine is very helpful for me, as long as its not carbonated. It makes my joints ache.
  6. Annemarcel

    Drug Interaction warnings

    I'm currently taking: 25/100 carb/levo 5x day .50 mg pramipexole 1 mg Estradiol 112 mpg Levothyroxine 1x day 20 mg Fluoxetine 1x day Magnesium Oxide 250 mg 2x day 5 mg Melatonin each night According to drugs.com I have several "moderate" drug interaction warnings for fluoxetine and magnesium, fluoxetine and pramipexole, and others that can cause dizziness, drowsiness and impaired judgement. My doctor asked if I would be interested in trying Lyrica for pain but after checking the drug interactions, I'm wondering if having so many moderate warnings is safe. Lyrica has warnings with fluoxetine and pramipexole that can cause dizziness, drowsiness and impaired judgement. (I'm taking fluoxetine for mild depression). Is gabapentin the same as lyrica but just an earlier generation of the drug? And should PWP who have balance issues already be worried about all these warnings of dizziness? Are these warnings the same for all SSRIs or just Prozac? I'm mostly rigid with balance issues and have fallen a few times so this is something that really concerns me.
  7. Annemarcel

    Phytic acid pros and cons

    I'm thinking about taking the time and energy to make sprouted Ezekiel bread for the numerous health benefits. But I'm reading different opinions on phytic acid. While some sites claim it can bind minerals like Zinc, Calcium, Magnesium and Iron and prevent them from being absorbed, others say it has neuroprotective benefits. I'm always happier when my magnesium levels are higher and it seems the only way to get that is to take loads of supplements. I'm wondering if one reason I'm having trouble with magnesium levels is because I love love love bread. Is the phytic acid depleting my magnesium? Some sites say it causes inflammation, others say it reduces it. There are so many different pros and cons, I'd like to know what you think.
  8. Annemarcel

    Buzzy head

    This has been a problem for me for quite a while. Like Stevo said, sleep helps a great deal. But making sure that my diet is balanced and that I'm getting enough magnesium has been very helpful. Its not a cure all, but it has made a big difference for me. I've also found that the best kind of magnesium (for me anyway) is citrate. I hope he can find some relief! -Marcie
  9. I really appreciate this topic too. I've been chastised online before for commenting on my beliefs and faith in God. So you learn to keep certain things to yourself when actually they should be spoken from the rooftop. Let your light so shine..... My faith in God and our Savior isn't just something I do, its part of me and how I choose to live. We are God's hands on earth and you just don't know how your actions will affect someone. I would rather be a source of comfort and peace than to be a source of contention. It took me a bit of hard knocks to learn to control my temper when I was young, but its amazing how the gospel can change your heart.
  10. Annemarcel

    PJ Day...

    Thanks for reviving this! Even though I don't post as often as i feel i ought to, I love this group. When I find myself in need of my own PJ day for reasons that I can't quite put my finger on in that moment, its nice to come here and see that I am not crazy or paranoid! The other day I was leading a meeting with three other ladies who are aware of my PD, but since I don't have a tremor its not obvious. By the end of the session, I was hungry, stressed and my blood sugar was dropping. I was embarrassed at how I was losing my concentration and frame of mind and would make comments about how unorganized I was while my hands were shaking as I turned pages in my binder. I left feeling very self-conscious and awkward. I wish I'd had the presence of mind to realize the situation i was in before it got that bad. I should have had a some tea and cookies with me for starters, but I guess I'm wondering how you all have dealt with situations that might be similar.
  11. I'm glad you started this thread. I can relate to almost all of the comments. Electric toothbrush, check. Peeling potatoes "backwards", check. Typing with my left hand, check. Stash of sinemet by the bed for mornings and purse for little emergencies, check. Using a knife to cut something works if I anchor my arm and throw my body into it. And dictation on my smart phone is brilliant for texts, emails and notes. Yippee for technology!
  12. Annemarcel

    Dumb question...yawning

    I wouldn't be surprised if its a tell. For years, I've had a strong tremor on my affected side when I have a deep yawn. I didn't start noticing other motor symptoms until 2008. Its the only tremor I have. I'm mostly rigid, slow and unbalanced.
  13. Annemarcel

    My Facebook post

    Your responses have been heartwarming. Thanks everyone for being who you are. In a perfect world we wouldn't need to stress over little things that feel so big to us. But here we are. I'm glad we have this forum to share our struggles and successes.
  14. Annemarcel

    My Facebook post

    I posted this last night and wanted to share it here. I know more people read than post here and thought this might be helpful to someone. Robin Williams’ death was a tragic shock to say the least. But to hear after the fact that he had been dealing with early symptoms of Parkinson’s Disease was revealing and troubling. An excellent article came out today that states the number one hurdle that people diagnosed with Parkinson’s have to deal with is depression. http://nws.mx/Ye7cvV “With tributes flowing in for Robin Williams, the chief medical official at the National Parkinson’s Foundation is hopeful the comedian’s passing will help raise awareness of the disease and the “double whammy” it poses to patients who also experience depression. “With Parkinson’s disease, depression is the largest hurdle that people face. You would think it would be mobility problems, but our surveys have shown that [it] is actually depression that they find their biggest challenge,” says Michael Okun, M.D., the medical director of the National Parkinson Foundation.” Parkinson’s has a stigma attached to it that can cause a feeling of isolation. Michael J. Fox waited seven years to reveal that he had the illness. Having the courage to own up and deal publicly with Parkinson’s is tough because of the fear that people will view you differently. I get why Robin Williams didn’t want to share his disease with the public. I wish he had. I think it would have helped a lot of people who are suffering with the disease to not feel like they’re alone. It’s taken me a while to feel comfortable sharing this. It's not the sort of thing that comes up in everyday conversation. But it’s part of who I am, so here goes. In 2008 I started noticing that my right arm wasn’t swinging when I walked. It felt heavy. A few months later my handwriting started getting small and cramped. I had no idea anything was wrong, except that occasionally my hand would twitch when I tried to mouse or do things that involved fine motor control. I thought I had Thoracic Outlet Syndrome. In fact I was convinced and was pretty peeved when a neurologist informed me that I didn’t. Over the next few years I saw a hand therapist, physical therapist, neurologist, vascular surgeon, orthopedic surgeon and chiropractor trying to figure out why my hand and arm seemed slightly paralyzed and non functional. Three years after first noticing something was wrong I got the news that it was possibly/probably Parkinson’s Disease. I don't have a tremor, and I may never have one. Who knows? I'm mostly rigid and slow and since my symptoms were so atypical, the doctor didn’t want to commit to a positive diagnosis. But I responded very well to carb/levo (Sinemet) which is the gold standard for treating Parkinson’s. The only side effect of the drug is dyskinesia, the jerkiness you usually associate with the disease. (Picture Michael J. Fox.) Two years went by with this doctor and still no headway. In 2013 he sent me to the Mayo Clinic because he didn’t feel like he could do much more for me. I had a DaTscan (an imaging technology that uses small amounts of a radioactive drug to help determine how much dopamine is available in a person's brain) that helped the neurologist there confirm the diagnosis. I finally had relief because now I knew what I was dealing with. Before that, I spent many nights in tears because I felt like I had lost control of my body and it wasn’t getting better. Mixing a bowl of pancake batter was an ordeal. Putting on makeup and brushing teeth was interesting. One night while brushing my teeth by holding the toothbrush with my right hand and moving it with my more mobile left one, my daughter came in and asked what on earth I was doing. “Shut up! I’m brushing my teeth!” I’ve learned to use my left hand for a lot of things. Walking is sometimes a chore. My right foot often drags and it puts extra strain on my left leg to keep my balance. I have to take extra care and pay attention to where I’m walking. Falling down is a big fear of mine. And stairs. I tend to be overly cautious going up and down stairs. I had more anxiety not knowing what was happening at the beginning of all this than I do now, knowing full well what my future may hold. Sinemet is wonderful! I can walk, write, sew, and do almost everything I want to do. And with more awareness and research, more options are becoming available. I’m an optimistic person. I always have been and I think I always will be. Life is an adventure! I think I’ve adopted that as my mantra. I’m not about to give in without a fight. I love being creative. I enjoy appliqué quilting, cooking, renovating our home, and gardening just to name a few. I know that things can change, but for now I’m happy with life. We’re all given challenges, and I think that how we deal with them says a lot about what kind of people we are. It helps immensely to have an incredibly loving, supportive husband and family, and a passel of great friends. My heart goes out to Robin and his family. -Marcie
  15. Annemarcel


    Thank you for sharing, Mark. My faith in God makes it easier for me to handle what the future may or may not hold. I'm glad to hear Tim is able to be with his family. My prayers go out to them. Here's to your speedy recovery! -Marcie