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lenamegan last won the day on June 7

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About lenamegan

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  • Birthday 02/16/1973

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  1. I definitely think you are on to something. I hope that if I can heal myself, which I intend to do, I can pass that healing back to my ancestors and forward to my son. Hopefully healing some of the karma of the fear.
  2. Hi Janey, I would be very interested in your results. I am GBA and LRRK2 positive and fit all your variables except I was not in NY around 9/11. I however was living in a situation with a lot of fear for about 10 years before my diagnosis. I wonder if the ancestral fear of jews that may be embodied in the mutations combined with the real fear set this in motion as it seems like it would around 9/11 as well. I hope you can find people and you'll come back and share what you find. best wishes, Lena
  3. And it makes you wonder about applying monthly neonicotinic pesticides application many do for fleas as that has been linked to PD in people.
  4. So i talked to the other three vets in my practice and I think you are on to something Otolorin. We have all seen many dogs with all the signs of PD and they are the ones that don't respond much to meds probably because we are treating them for pain and anxiety not PD.
  5. Otolorin, I've been thinking about your question all day. I have seen so many animals with all the symptoms of PD and those are the ones that the standard meds don't work well for. I truly believe we are missing it and not treating it correctly. You have peaked my interest - I might try Sinemet at a low dose in the next one I see. Thank you!
  6. Re Mucuna - I think it is a fine treatment and works well for many and is neuroprotective - it didn't resonate with my body - made me very jumpy/anxious if I took more than one a day. It was the first thing I tried.
  7. Some dystonias are also C/L responsive. I haven't diagnosed an animal with PD but I am starting to wonder if we are missing it in some of the old, shaky, slow, rigid dogs.
  8. Three kitties and a former Taiwanese street dog Alli. Do you have animal companions?
  9. Yes definitely animal geek also - I talk to the crows in our neighborhood every morning and enjoy my four animal companions
  10. Agree with Dave. Get back on the C/L - newest thoughts are it actually slows progression if you start early but keeping your dopamine receptors alive.
  11. I have never smoked. I have all the symptoms of PD - rigidity, slowness and tremor and abnormal dat scan and two mutations that cause PD -GBA ( which raises your risk 5x) and LRRK2 (which gives you a 50% chance of getting PD). However primary dystonia has all the symptoms of PD with a normal dat scan, same area of the brain for both but no destruction of dopamine cells in dystonia. My dat scan was abnormal so I was diagnosed with PD by my neurologist. HOWEVER because Serge Brinn (he is one of the founders of google and is LRRK2 with no PD yet) donated 50 million to studying LRRK2 we know a lot about it. Two recent studies show all people who carry LRRK2 mutations with no PD have abnormal dat scans and all people with LRRK2 have at least some non-motor signs of PD. Do we all have mild/early PD??? So in my case there is no way to show if I have full on PD with secondary dystonia or LRRK2 mutation signs with no PD yet or very early PD and a primary dystonia with partial functional paralysis on my left sign. I got PD sudden onset which is much more common with dystonia and I can trick my body into normality for short periods which is another sign of dystonia. However there is no way for me to tell especially since I may have both. There is some thought that LRRK2 Parkinsons is a different disease because there is usually no cognitive component and there is a thought that the destruction mechanisms are different - from us being born with short stubby neurons that die easily and mirochondria disfunction as opposed to the protein plaques in other forms of PD. However there are many similarities if that's true.My supplements are aimed at PD and my specific mutation. And I'm treating the dystonia as well. Sorry I'm kind of a big medicine/science geek!
  12. It is an extremely strong neuroprotectant esp for cells that product dopamine. There are a couple studies that show smokers with PD progress at a slower rate than now smokers, it also is a strong parasympathic so can help with anxiety and helps with muscle tension. It is in study for dyskinesis from Sinemet which it seems to be good at treating. In some people it decreases PD symptoms. I actually use it mainly as a hack around damage to my nicotinic acetylcholine receptors from a neonicotinic pesticide that I had massive exposure to in my 20s and as a protectant because of my LRRK2 mutation. And on the off chance I don't have PD yet and primary dystonia instead (all people wit LRRK2 have abnormal dat scans so mine is non-diagnostic) it reduces my chance of getting it from 50%-25%. Added bonus - it helps with my rigidity. As I'm sure you know, it is highly addictive though and absolutely not something to be added without a lot of thought. I'm in for the long haul and plan on taking it forever.
  13. So yes very controlled with current program. I also do tai qi, circus arts, feldenkrais, yoga and 2-3 hours of rehab a day (walking, dancing, other movement exercises from Dr. Farias). And I use a small nicotine patch. I am determined to get ever better but even if I stay at this point my life is very good:-)
  14. I'm down to just tremor and slowness in the left side of my body now (mostly left arm especially my hand) and mild rigidity left side only. I can now walk almost normally. All non motor signs are gone and I feel very comfortable in my body again. At diagnosis I was highly uncomfortable in my body, had severe anxiety, GI issues, bladder issues, extreme fatigue, sleep issues, and mild freezing and walking was very slow and difficult.
  15. Hi Otolorin, I'm a veterinarian who specializes in holistic medicine to treat progressive, fatal and hard to treat and diagnose diseases in animals so kind of in the perfect profession for managing PD. So some of my supplements are from my own research and knowledge base. I also work with a team of naturopaths Sam Evans and Laurie Mischley who just treat Parkinsons. Laurie does PD research at Bastry university in coordination with the Michael J fox foundation and Sam is her resident and they added many and monitor my list - they are who also manage my drugs. Here's my full list with explanations of why I take them I've actually on almost no Sinemet (I take 1/2 a pill about every two days) since starting a rehab program designed by Dr. Joaquin Farias in Toronto - just spent four days with him. best wishes, Lena