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Link To Video Of Me Having The Worst Distonia Attack I Have Ever Had.

Link To Video Of Me Having The Worst Distonia Attack I Have Ever Had.

https://drive.google.com/file/d/0Bz1gSHDeDFyQa0...

A MyParkinsonsTeam Member said:

I was in tears watching you! That has never happened to me, my heart hurts seeing you like that! You are an amazing woman, hang in there. I have had PD for 10 yrs. and I hate it some days, and there is good days that I feel like I can put it into remission by working really hard! I am getting treatment from a functional nutritional practitioner. I am on a paleo diet and different vits and minerals. So far it has made me feel better, but I still have a long ways to go to remission. But I will do it with God's grace and me not giving in to it. It does not define me, I'm still the same person inside only a bit broken and fighting to get my life back to some sort of normalcy!
I take cannabis oil and grew some to vape! Helps me with anxiety and sleep. I push on with prayers everyday to my Divine and angels!

posted almost 4 years ago
A MyParkinsonsTeam Member said:

The lady with me was a friend who has pd as well she was struggling to see me like that we met online and in person the day before so she could support me through that which is exactly what she did. This was filmed about 2 years ago and it's why I had my dbs surgery since then not one attack. I agreed to do this for research purposes and I am proud I did, the film was shown at the Royal Albert Hall in April this year the charity event to raise money for research for Parkinson's UK and achieved the sum of £140,000 that's also something i am extremely proud off. The medication I took the correct the attack helped but it took an hour to kick in and that was pills and injections.
I won't be doing it again once was more than enough for me. Trial is now finished that was 6 weeks after I stopped taking the drug and guess what yup I was on the placebo which was decided by computer as trial was double blind mean drs did not know or me untill all on trial had finished and results we analysed.

edited, originally posted almost 4 years ago
A MyParkinsonsTeam Member said:

I will upload one when I have one x

posted almost 4 years ago
A MyParkinsonsTeam Member said:

i am so sorry you went through all that pain, even as part of research----somehow it does not seem right to let someone suffer like that----and i wanted to smack the nurse or whatever she was who was supposed to be helping you----with a big grin on her face, sure it was not her----seeing this will make me wonder if i will ever go through research---many hugs to you....

posted almost 4 years ago
A MyParkinsonsTeam Member said:

I was put in to the PD hospital here at Kingston and they took me off all my meds and after a week they they sent me home and told me to stay off the meds as long I can, I lasted another three days off the meds and I couldn't take the pain any longer so I went and saw my family doctor and he put me straight back on my meds. He wasn't happy with the PD doctors.

posted almost 4 years ago
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