Thanks for your posting...I am experiencing same thing recently..I'm 60 in my 14th year with Parkinsons..I had DBS implantation surgery 5 years ago to deal with tremors / dyskinisa .Like you I play golf everyday..Recently experiencing blackouts getting out of golfcart almost passing out.. I'm positive after watching / listening your story I have NOH... Thanks!! Ji m St.Louis Mo.
This is Lorraine, Leon’s wife. He passed away in July 2022 after a revised diagnosis of Multiple Systems Atrophy (MSA) with Parkinsonism. He lived a life of promise and is missed beyond belief.
I’m only 16 but sometimes when I get up for doing school for the whole day my head gets dizzy and I just fall on my bed I dont pass out but it’s like idk I lose all energy. Is it the same thing they are talking about in the vid.
I’m 13 and whenever I stand up I feel dizzy my vision goes black and I almost fall over idk if I should get it checked out by a my doctor tho do you think it’s what they are talking abt in the video? I think urs could be what they are talking abt
Didn't know this was so rare. This is so annoying and scary in the work environment. Came face to face with concrete years ago and many visits and medications later. Covid ramped this up last year and made it so much worse. Still getting tests hope they find a cure.
The information here is so valuable....med student came by....thank you Leon for sharing your life challenges....hope you overcome them
Thanks for your posting...I am experiencing same thing recently..I'm 60 in my 14th year with Parkinsons..I had DBS implantation surgery 5 years ago to deal with tremors / dyskinisa .Like you I play golf everyday..Recently experiencing blackouts getting out of golfcart almost passing out.. I'm positive after watching / listening your story I have NOH...
Thanks!!
Ji m
St.Louis Mo.
I have POTS. I can relate. Postural Orthostatic Tachycardia Syndrome.
I’ve just been diagnosed and it’s given me hope, thank you
This is Lorraine, Leon’s wife. He passed away in July 2022 after a revised diagnosis of Multiple Systems Atrophy (MSA) with Parkinsonism. He lived a life of promise and is missed beyond belief.
Heartfelt condolences 💔 May Leon RIP.
I'm so sorry Lorraine. Thank you for sharing Leon's story.😥
Heck...I now go on the TH-cam's here to travel around the world. Thank goodness for the internet!
I’m only 16 but sometimes when I get up for doing school for the whole day my head gets dizzy and I just fall on my bed I dont pass out but it’s like idk I lose all energy. Is it the same thing they are talking about in the vid.
I’m 13 and whenever I stand up I feel dizzy my vision goes black and I almost fall over idk if I should get it checked out by a my doctor tho do you think it’s what they are talking abt in the video? I think urs could be what they are talking abt
@@Rorakatethis appears often in puberty
@@bowfanatic9669 ok noted thanks!
@@Rorakate I hope you are able to tell your doctor. Risk free “treatment” is electrolyte drinks and compression socks. Stay very hydrated
It needs to be investigated, they thought it was POTS with me to begin with but it turns out I have NOH
Didn't know this was so rare. This is so annoying and scary in the work environment. Came face to face with concrete years ago and many visits and medications later. Covid ramped this up last year and made it so much worse. Still getting tests hope they find a cure.
Doctors won't tell you anything. They say they don't know what is wrong.
I'm 16 why the heck do i have this
Might be chronic fatigue syndrome
That’s what I have
It's really frustrating
I’m 14 and also have it. Sometimes.