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lenamegan

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About lenamegan

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  • Birthday 02/16/1973

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    Seattle, WA
  1. 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 https://pathwithpaws.com/blog/2017/02/18/using-supplements-to-treat-young-onset-parkinsons-from-lrrk2-mutation/ and some info on using niacin http://www.doctoryourself.com/hoffer_niacin.html Hope this helps! best wishes, Lena
  2. 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
  3. 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
  4. A thread on dystonia http://forum.parkinson.org/index.php?/topic/8506-dystonia/
  5. 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
  6. 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!) https://pathwithpaws.com/blog/2017/02/18/using-supplements-to-treat-young-onset-parkinsons-from-lrrk2-mutation/ 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
  7. 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 https://www.ncbi.nlm.nih.gov/pubmed/2289218 best wishes, Lena
  8. 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
  9. Hi Oto, I'm a veterinarian who does mainly acupuncture and holistic medicine. I do tremor in my work and I am just very open with my clients that I have a neurologic disorder where I don't have full use of my left hand. Everyone has been very supportive and I still have as much work as I want to take on. My animal holding skills are a little reduced but I work around that and ask my clients for help in holding their animals as needed. I work mainly with hospice, cancer, and hard to treat diseases so my disability has been greeted with a great deal of support by my clients. I've seen enough miracles in my work to believe that I can continue to do well myself. best wishes, Lena
  10. Hi Otolorin, I'm sorry you are dealing with all this. I'm also fairly new here. I think it is possible to find a good balance of meds/exercise/supplements. I had horrible side effects on Azilect and stopped it. I am now on a low dose of Sinemet with absolutely zero side effects, which perhaps makes me lucky. I am self employed in the medical profession and my symptoms had progressed to a point where I was afraid I would have to stop working because of my tremors, discomfort, anxiety, and inability to use my left hand much. With a small amount of Sinemet, multiple supplements and daily exercise I am back to being able to do everything I need to do my job again. My body is not normal but I now have very little discomfort and feel like I'm a normal person with a slight disability. For me finding a naturopath who specialized in Parkinson's really helped. She listens to me and is my partner is managing this disease and everything I take for it. best of luck Lena
  11. Hi Sean, I'm a newbie here as well although I've had symptoms for two years after sudden onset. I would consider seeing if there is a good naturopath in your area. I am lucky to be near one of the best naturopathic universities in the US. I have gotten very good symptom control with glutathione injections and there is a thought that they might slow progression. I would also consider having genetic testing done. I just found out I am positive with the LRRK2 mutations and there are some drugs getting close to drug trials that may be able to slow or prevent progression for folks with this mutation. It doesn't hurt that one of the google founders has this mutation and has donated 50 million to studying ways to stop the disease. And as mentioned before, daily exercise makes such a difference, esp with music. best wishes, Lena
  12. Just wanted to post a follow up on the Glutathione injections. They have been absolutely amazing for my symptoms and it seems like every time I get a shot it works better and lasts longer. The weeks I get a shot I am able to half my meds. They now last about a week (my first shot lasted about a day) and reduce my tremor almost to nothing and help with fine motor and rigidity as well. Insurance doesn't cover them but they are fairly cheap. Highly recommend as an alternative treatment! best wishes, Lena
  13. Hi all, I had sudden onset Parkinsons symptoms come up about two years ago including at the time a resting tremor that was present all the time if I was still. A month later I catch a cold and during the time I was sick my tremor was completely gone and my rigidity was about 75% less. It returned as soon as I was well again. So it's been two years since I've been sick and I just caught a cold again. My tremor is much better now that I'm sick again and rigidity is much less again. Not as dramatic as the first cold but still definitely significant. Do other people also see an significant improvement in symptoms when you are sick? Makes me think I have some kind of autoimmune component to my disease. At least being sick isn't as bad as it could be:-) best wishes, Lena
  14. Hi MurrayPD, the glutathione is a powerful antioxidant. It's been shown to help with PD symptoms in some people. There is also an oral and internasal form. I understand your work concerns. I'm the sole provider for my son and me. I have a back up plan that gives me about 30-40% of my current income (I have two businesses and one is run by a great employee) but Seattle is an expensive city so hopefully can continue my physical work also.
  15. Thanks for the welcome! I just got back from seeing a naturopath who specializes in PD. Just got my first glutathione injection and my tremor is about 50% better and slight improvement with fine motor control. Feeling a little hopeful! I find it hard to juggle this disease with trying to support my son and me. Luckily I have my own business with very loyal and supportive clients - feeling very blessed for that but worried about the fine motor going more. ShakerDave my great grandmother was Lena also! best wishes!