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My goal for 2013 is to raise awareness of Young Onset Parkinson's disease, so I made a slide-show type film for the American Brain Foundation's 2013 Neuro Film Festival.
I asked and received permission from 46 individuals to use their photographs and personal stories in my film. I was shocked by how long it took many of them to get diagnosed properly. I thought my eight year journey was unusual, but it seemed to be the norm. Many were told the exact same things: you drink too much caffeine, you are just under stress, you don't get enough sleep, you are too young to have Parkinson's or my favorite; it's all in your mind.
My film is simple: a slide show with narration, no fancy cinematography, no high tech graphics, no custom music, but I think it makes a good point. All those smiling faces are Young Onset Parkinson's patients.
Please help me spread awareness about Young Onset Parkinson's disease by watching and sharing my film.
To watch my film, use this link: Not our Father's Parkinson's or view it below.
Clicking on the colored words will open a new window and take you to a different story or link.
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ReplyDeletei never really elaborated on my diagnosis, mainly because it was pure divinity that i had sinemet in my medicine cabinet for rls. I had abruptly started taking it when i started having worsened symptoms. Not to say, the rigidity had not gone on for several years and i had an excuse for every symptom from a bad mattress (cervical dystonia, nerves (tremors), hormones (excess sweating) and the bouts of confusion were blamed on the lack of sleep from rls; but since i am usually a chatty kathy it took the abrupt onset of stuttering and postural issues one day to get me to an e.r. It was like all my symptoms had manifested at one time. Particularly on a very hot alabama summer day. The internal tremors and all the other symptoms were"stress" said an er neurologist; but all the xanax, and valium they gave didn't stop them or the tremors and the hotter it got, the worse these symptoms were. I was referred to my neuro who, after mri's, bloodwork and spinal tap, realized that i was his first 30 year old parkinson's patient.Just as you say in your film; "Every neurologist on the planet knows MJFox has it" I had also told him that my tremors stopped for two hours every night when i took sinemet, but after abruptly stopping, i got worse. It wasn't rocket science after that. I dread the summers so much because I can't enjoy them. Temps over 75 are my worst stressor. I often wonder who else out there has this issue.
ReplyDeleteExactly exactly exactly...stress, you've gained weight, hormones (even though tests would be fine) fibromyalgia, tests show nothing (translation: all in your head). Why any of these things would cause 3 falls from top of stairs to bottom, I do not know. Also full blown tremor in right hand/arm (although I would show them I could make it stop for a while by clenching and unclenching fist. Finally even mentioned my gpa had pd...told pd does not run in families. I was in pretty bad shape by the time I was referred to neuro. Took 6 months to get in and by then I wasnt even driving. Everyone just kept wanting to poke antidepressants down me. I told my husband im not depressed, im ticked off, something is wrong. Once or twice a year I would try drs again. Such a waste of years. So glad to have a diagnosis and medicine. Friends say "so sad" but it is better than hurting etc and feeling your being a baby and its all in your mind. Hopefully drs will become more aware and others can get help quicker.
DeleteIt is not just young people who are misdiagnosed for Parkinson's. At least 17 years ago I had tremor in my left hand and my writing kept getting smaller. I was told at that time it was nerves or stress because of my job. A few years later it was called Essential Tremor by a Neurologist. Medication did not help much and after a while I just let it go at that. It continued to get a little worse as time went on and then about three years ago I went to a Movements Disorder Clinic. The Neurologist there did some tests and gave me some pills to take. He asked me to come back after a short time and he would check again. It was then that I was told it was not nerves, stress or Essential Tremor. He told me then that I had Parkinson's. Now I am 72 so there you go. I believe many times it is misdiagnosed because some of the symptoms mimic many other diseases and so it is hard for a doctor unless he specializes in Movement Disorders to properly diagnose what we have.
ReplyDeleteWhat can be done about it? I guess only education will help. Not just for the public that sees us but for Doctors. They need to be made more aware of our symptoms and be more open to the different causes of them.
IF my math is correct, you were in your mid-50's when you symptoms began, which is right at the cut-off for Young Offset. I think the MDS have learned a lot in the last decade, but the primary care Dr's and the general neurologists haven't.
DeleteSo, I am an Old Young Onset Parkinson's People....
ReplyDeleteYou are as old as you want to be !
DeleteI was diagnosed at 35, I'm 41, have had Parkinson's since late 20s... Great site wud like to be very active and give advice if you need me. Thanks so much for this site!
ReplyDeleteI was actually diagnosed within a year, but that is because the first specialist I saw was an MDS who specialized in Parkinson's. My primary care physician sent me home the first time saying it was just stress, and I had to go back a second time to get him to send me to a specialist.
ReplyDeleteI was diagnosed at age 57 but it took 5 yrs-thank you for all that you do.
ReplyDeleteBarbara
It took ten years to get diagnosed, it started in my hand, so was told corpal tunnel, two years later it was disk 3,4,5 in my neck catching a nerve, six years I was ignored until someone told my I had PD. It then took another year to get my GP to send my to get test. I was 42 when my symptoms started.
ReplyDelete