People with fear of Parkinson's

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People with fear of Parkinson's

Postby vitalogy03 on November 10th, 2014, 1:36 pm

Helllo all!!
I havce been comming to this site for over three years now! Like so many i googled a symptom and bam Ive gone from thinking I had ALS, MS, PD and man many more.
I have never been able to kick the fear of having early onset parkinons. I guess its not having a test available to see 100% if you have it or not. That fact it takes years sometimes to be dx with it made it so much worse for me. I still go through times when I think my twitching hand/ every so slight tremor (which everybody has) or something else that happenes to me is related to haveing this. I want to hear other peoples stories about their fear of having PD and whats helped get over it.
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Re: People with fear of Parkinson's

Postby SecretAgentMan on November 10th, 2014, 9:31 pm

Fear is a product of the mind. If you want to get over your fears, learn how your mind works and use it to your advantage. Hypnosis and meditation are great tools for empowering people to relax and find their inner peace.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: People with fear of Parkinson's

Postby PEZZA69 on November 20th, 2014, 7:22 pm

I tend to worry most about PD and Lewy Body Dementia as my symptoms tend to match these disorders the closest. Twitchy thumbs, stiff twitchy achy calf muscles, vision issues, restless sleep, dizzy when standing etc At 38 I appreciate this is extremely unlikely especially for LBD but suppose I worry that I am the special one and will get it really early haha

I had even volunteered to take part in a clinical trial (tomorrow....ahhh) as a healthy subject which will involve genetic testing, voice, memory exams, smell tests, neuro exam and various brain scans in the hope that they will give me some feedback that will reassure me to reduce anxiety levels. I am not even sure they give feedback, but one of the terms and conditions of the clinical trial is that if anything is unearthed of concern they will inform my doctor who can advise me of the results. Very scary lets hope I hear nothing or notice the neuro being overly interested in any parts of my exams.

One thing I have noticed since all this kicked off is that I tend to be hyper aware of any symptoms in myself and also other people that I am with. I had self diagnosed my Mum with Parkingsons, then LDB while she was dying of Overian Cancer much to her annoyance. It is one of my huge regrets that I placed this extra stress on her during her last few months when in fact it was a mixture of the cancer causing her immobility and various assortment of drugs (pain killers, morphine, chemotherapy, anti-depressants, muscle relaxants) causing an essential tremor and memory deficits. It was only after I started to analyse my 42 year old sister and Dad (who is 74 and still cycling for miles each day) for symptoms that I realised this had to stop.

Part of me thinks that if this benign condition which we are all hopefully suffering with can almost be as bad as the condition that we think we have.

Anyhow I will let you guys know how I get on with the clinical trial :)
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Re: People with fear of Parkinson's

Postby Karenmg on November 30th, 2014, 10:36 pm

PD is my biggest fear. I'm always thinking that my twitches and thumpers ,which seem to be getting worse , are a precursor of pd. I've had twitches in my legs since my twenties. I now have them in my left bicep, tricep and elbow. Everyday for two years. Sometimes thumpers which almost move my arm. I'm now 63. I've had a normal EMG just showing a pinched nerve. Dx is bfs. I've seen three diff neuros all who say I'm very healthy. However in the back of my mind I wonder as pd can come on slowly over time and there really is no definitive test until you are far along. MS in my family. Father and dtr.
The hardest part is to not focus on it. If we could all do that and not become so anxious I'm sure the twitches would be better. In the meantime I exercise, do yoga and see a hypnotherapist which is extremely helpful.
I i have to comment that this site is very helpful in that it's reassuring when I'm anxious about some dread neuro Dx because the twitches are very active. I can see that other people have the same symptoms, all of which seem to be benign. My head knows it's bfs, it's just hard to believe that's all it is at times. I'm truly hoping I can get to a place where I just ignore them and stop thinking about it everyday. I hope everyone out there can get there as well.
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