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lenamegan last won the day on March 28

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About lenamegan

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    Seattle, WA

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  1. Hi Tamara, It looks like there is not a lot in the literature but I did find this study on people with segawa which seems to indicate that it is possible to give birth to healthy babies which on l-dopa but being on l-dopa/c-dopa may result in fetal loss. 6 live healthy births on l-dopa, two miscarriages on l-dopa/c-dopa and one miscarriage with no drugs. It is a small number though
  2. I'm doing great on Sinemet with absolutely no side effects - I usually take two a day, sometimes 3. My naturopath, who treats only Parkinsons and works with the MJF foundation, is convinced you can avoid dyskinesia with taking it with fish oil. She has also found that her patients on Sinemet have slower progression and recommends starting it right away. I do take multiple other supplements which are extremely helpful to me and I exercise daily. I actually feel like I have the best health I have had in the past 20 years. My health gets better every month and my PD symptoms decrease, a little at a time. At this point all I have is mild motor issues. I did start with azilect prescribed by my neurologist and it made me much, much worse. You can definitely have good quality of life:-)
  3. My naturopath recommends taking Sinemet with something acidic to aid with absorption. I usually use orange juice or lemon juice. It may be that you stomach acid is low in the middle of the night since you are not geared up for digestion. I also use citicholine to help my meds last longer. I'm more of a newby than you but get a good 6-8 hours and a passable 12 from one pill with the citicholine on board.
  4. I definitely notice changing symptoms with my cycle. My symptoms are the most managed for me when I am menstruating, in fact I feel almost normal even before my meds and that usually kicks in within an hour of the start of menstruation. Makes me look forward to getting my period:-) I stay pretty good until after I ovulate and then my symptoms get worse for the next week and then improve a bit the week before mentruation. Is this similar to your experience?
  5. New normal, I just wanted to mention lion's mane mushroom for your granddaughter. It is the only substance that has been found that seems to enhance myelin regeneration. I have no experience with her genetic disease but I take it for my own PD at 3g a day and it has brought back a good bit of my fine motor function that was lost in my left hand. I hope there are more future studies on it. It sounds so difficult to have someone you love who is so young dealing with that. best wishes, Lena
  6. Welcome! I'm also fairly new here, 44 years old with a 19 year old son in college. While I wish I didn't have PD, I do feel like it has changed my life in positive ways also. I am much kinder and gentler to myself now and I know my own health has to be number one. My onset was sudden and right before diagnosis I feared I would have to stop working because of my symptoms. Now my life is in balance thanks to exercise, many supplements and a small amount of Sinemet. I find I appreciate everything now - walking, exercising, laughing, my work, seeing the trees and flowers. I think because thinking of the future is scary, I now live in the present. Not that there are not times I am scared and feel despair, those come too, but not very often anymore. And I feel like I am actually healing now, my symptoms continue to get better every month. So be kind to yourself, accept the fear - we all have it and do your best to love what you have and what is around you! best wishes, Lena
  7. It's super rainy in Seattle today but we have magical nesting hummingbirds sitting on eggs in our backyard!
  8. Hi Edward, I don't have any experience with rivastigmine, so unfortunately nothing to add there, although I certainly hope it helps you. I've had YOPD for two years and my day job is that I am a veterinarian who specializes in holistic medicine and hospice and difficult to treat diseases in dogs and cats including dementia. I rely on a host of supplements to treat my own disease and many are known for helping with dementia, esp lion's mane mushroom, high dose niacin, ginkgo and fish oil. I feel like I now have the best mental health I have ever had, even before Parkinson's. The high dose niacin was especially miraculous for me for mental health - there are a bunch of articles on it for use for dementia. Before taking it I almost had to stop working my fatigue, anxiety and brain fog were so bad. Here's what I take and some info on using niacin Hope this helps! best wishes, Lena
  9. I'm lucky to not have any balance issues at this point but I do Feldenkrais classes that really help my other symptoms and I know that also can really help with balance. I also do a circus class for folks with PD - we walk on the tightrope and do a lot of trampoline work - very good for balance! Although I imagine not available a lot of places:-) best wishes. Lena
  10. Hi Murray, Ginkgo can have effects on your blood pressure so it may be the issue that causes the dizziness. I also find that any of my supplements that push blood to my brain - niacin especially because I take such a high dose, can make me slightly lightheaded for a short period of time. best wishes, Lena
  11. A thread on dystonia
  12. Sounds like dystonia which is way more common in us younger crowd. I haven't had anything as painful as you but if I can get that part of my body to tremor it will usually clear. Usually a hot bath or certain positions will induce a tremor strong enough to help. I usually think of dystonia as just going along with PD disease. best wishes, Lena
  13. I'm lucky to live in a city with a naturopath who specializes in PD and who teaches and does research at Bastyr university. With the help of her resident and through my own research I've found a protocol that really works for me. I'm lucky to have a medical background myself and specialize in hard to treat diseases in animals so I am used to researching less known treatments. Anyway if it's helpful here's the complete list of what I've found helps me with links to some of the studies (I want to expand on this in the future because there is a lot of information out there!) Also completely agree with Stump on exercise - I considerate daily exercise as important as my meds! I rotate tai chi and feldenkrais with dance and yoga and walk at least 30 minutes every day if not more. I completely get it is harder with younger kids. My son is 19 so I've moved more into a supportive role than one of care. best wishes, Lena
  14. It seems from reading that there is a lot more variation in us YOPD folks. Sometimes my Sinemet makes me almost normal and sometimes it does almost nothing. Luckily I get about 6-7 good hours per dose and about 24 better hours so I'm never as bad as before I started it even if one of my doses doesn't do much. One thing that may be getting in the way is if you eat protein for dinner you need to wait at least a half hour before taking it. You may already know that. I also take citacholine with my sinemet to enhance its effectiveness best wishes, Lena
  15. Hi Oto, I would imagine you might also have clients who are inspired that you have a disability and are fighting it. It might make them feel that you understand their own disabilities and struggles better and can relate to pushing through hard issues. It might actually make them feel like you will be better at solving their problems than someone who can not personally relate. I hope your employer sees it that way as well. best wishes, Lena