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About janey

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  1. Plant Paradox

    Anyone reading? Or doing? I just started and it has already been very interesting.
  2. Scared about meds

    Chiming in...just saw a neurologist here who will be my Doc. I was diagnosed originally by a different neuro. This Doc wants me to take Azilect. I am loathe to do so but am rapidly losing fine motor use of my dominant hand. I have otherwise been feeling so well! Supplements, Chinese herbs, medical MJ, exercise. I don't want to mess with some whacked out pharma. Ugh.
  3. A Journey Round My Brain

    Awesome blog. Wow. Thank you. New here...diagnosed in March. 47 YO. w/ GBA.
  4. medical marijuana

    Hi Otolorin, It smells but with the use of the Pax the smell is really not so bad. My husband hasn't said it smells too much. No neighbors have complained. I imagine smoking using the Pax (or another vape) in the bathroom with the exhaust system on would contain the smell. I also use tinctures and they don't smell at all. I use a 5:1 CBD THC tincture and a pure CBD (cannibis not hemp) tincture. It depends...somedays I only take the CBD dose one time. I find if I am having a non computer day I need way less. Typing causes my tremor to increase. I smoke once a day before bed and fall into a wonderful deep sleep. I really feel like a true believer! I never ever smoked as a teen or young adult. This is really helping my mood, outlook and body sensation. The CBD relaxes the muscle cramping and quiets the tremor. Pretty much they all do that. The smoking lowers my anxiety and quiets my whole nervous system. I did choose a specific strain of indica for just that purpose. This is all new to me so I am doing research online (green flower and leafly) and will try other strains. Also finding the info about turpenes and the endo cannaboid system interesting. I saw a Dr. in MA who said lots of her clients find relief using CBD. And she saw no reason why this early on in my disease process that I should using anything else. I know of someone who has been using MJ as his only medication for 10+ years.
  5. Anyone Else in the PPMI study?

    Thank you Shop Guy and YItti! Yah, the radiation is now less of a concern after speaking to some folks. I am doing a bit more research on the spinal tap to quell my anxiety.
  6. Anyone Else in the PPMI study?

    Thanks. That continues to be one of my concerns.
  7. Just got accepted and reflecting on whether to participate. I am particularly concerned about exposure to radiation and spinal tap. Insights? Thank you,
  8. Morning Stiffness?

    My body does feel tight in the mornings. My feet feel strange. I begin with a 20 minute simple yoga series. Forward bends mostly. That helps me a lot.
  9. medical marijuana

    As of right now (and I have had motor issues for 3+ years but only recently diagnosed), CBD and THC are SAVING my life. I am taking some Chinese herbs and my vitamins and then using CBD during the day and smoking Indica at night. I will continue this as long as it works. When I use, the tremor in my body is barely perceptible. And all the cramping goes away. And anxiety too. I was never a recreational user-missed that chapter thanks in part to Ronald Reagan's, "war on drugs" in the 80's. Those ads of my brain frying in a fry pan turned me off to trying. However, now as an 47 YO living in CO (legal) I am partaking and thrilled about the improvement to my quality of life.
  10. Otolorin, Hi! Thanks for your interest. I suggest you invest in the 23 and Me testing- if that works for you. I think for the purposes of this attempt, I need to control the variables as much as possible...for example people with MS have petitioned the fund and been turned down- there are too many variables. BUT! If we can show some possible causality between the interplay of genetics hitting a threshold, "on" moment...then maybe we have something. Being Jewish is less important as a variable. It just happens that the gene is pretty prevalent in Ashkenazi populations. Long winded way of saying...if you have the genetic marker then, yes!!
  11. Lena, I wish that so much for you and for your son and for his children and so on as the DNA travels... As time allows, I look forward to hearing more about your healing journey and will share mine.
  12. Cannabis CBD Oil

    I use CBD cannabis (Live in CO where it is legal). When I travel I use HEMP CBD. I find both help with tremor and restless feelings. I just need to take more of the Hemp than the cannabis. I also smoke now regularly (Indica, usually using a vape). SO ironic to me as I never even tried MJ as a kid. It helps so much.
  13. Thank you Lena. I think, how could there not be an ancestral/lineage fear connection...!! Fear beings such a large part of my Jewish experience. It's like I carry it forward for my peeps. Would sure like to break that cycle. I will definitely report back in. So far there are two of us. I just started. So where there are two...
  14. Hi, I am newly diagnosed, late 40's. I have a theory and am seeking to gather a statistically significant sample in order to petition the 9/11 Zadroga fund to support those of us impacted, including impact on our families. Also, research! If we gather a solid sample, I expect researchers may be interested in learning more about threshold events and GBA/LARK. This might help in the future. Factors: GBA or LARK variant (genetic testing through 23 and Me or also through PPMI/other genetic testing) Lived in NYC during and following 9/11 Likely Ashkenazi Jewish heritage, although I think if you have the genetic variant and are not Ashkemazi we may still be able to build a viable sample Early Onset Diagnosed in the past 2-4 years (2013-2017)- symptoms might be longer standing...but looking at date of diagnosis Please drop me a note or PM me if you meet these variables. And if you know anyone else...send them my way. thank you!