Generalized Dystonia

[oileann1]

I hope that the Dystonia won't be as vicious or as bad as it can be. Do feel free to email me if you wish to paddyjdoyleATgmailDOTcom. I'm sure you'll figure out that email. If I were to put the address in the usual way, youtube and Google don't let me send this post to you.

[lytaalexanderable]

ive just found out ive got this and its been confirmed at kings college london.

[DarthFurie]

I sympathize with your struggle. Best wishes to you.

[Superflamer99]

I love your adorable dog! :3

[annita645]

God bless you !!!! i am with you ;)

[jaquot7]

Dear Paddy, thank you for sharing your ordeal with us the general public who care.

May I ask since how long you're suffering from GD? About the eamail, you should know that everyone can use the personal email integratade in this website up in the right corner under our name or pseudonymn. I would like to exchange emails in that system because it more personalysed and private. I wish you well Paddy and again thank you for sharing your ordeal with us we sure do ampathise with you my dear friend.

[ILUVHORSES1981]

Are you able to take any meds for this? MY left shoulder started twitching three days ago and I cant figure out why...the only thing that helps it is valium, but after two hours of taking my meds it comes back :( How can u tell if its dystonia? The er doc said it was a focal movement disorder of unknown cause. I also have Lupus so we are trying to rule out a Lupus related movement disorder...I hope u feel better soon

[oileann1]

Thanks for that comment. Life can be difficult but somehow we just have to keep going. Best wishes. Paddy.

[Tayredty]

wow I know excatly how u feel bruh I so srry tht u gotta fight this every single day well thts 2 of us :( man i was recently sum wht diagnosed wit neuro muscular desiease becuz its really diffucult for me to like extend my arm str8 out liike everyone one else and my otha seems to always seems to elavate every time I try to use it(like my elbow goes up) but yeah I was wonderin if this good to take anyone? (Trihexyphenidyl) yeah!!!!!!!!!

May God Bless you bruh...

I'm prayin 4 yu man..

[IrishPrincessEGB]

i wonder how he got the camera so perfectly praportiand to him....

[Loonatiks3]

hope you're doing okay Paddy :-)

[oileann1]

@Loonatiks3 Thanks for that, I am doing the best I can. I appreciate your concern. Best wishes. Paddy.

[whoa10wholepacks]

Thanks for posting. I have dystonia too - meiges..

[oileann1]

@whoa10wholepacks Thanks for your message, I appreciate it. Take care. Paddy.

[oileann1]

Thanks for that kind comment. If you want to email me that would be great. Then we could chat if you wanted to. Best wishes and thanks

[viceatschicken]

If we lived near each other I would come over and help you out with whatever. I think you are very brave and strong. Let me know if or how I can help you.

[viceatschicken]

If we lived near each other I would come over and help you out with whatever. I think you are very brave and strong. Let me know if or how I can help you.

[viceatschicken]

If we lived near each other I would come over and help you out with whatever. I think you are very brave and strong. Let me know if or how I can help you.

[viceatschicken]

If we lived near each other I would come over and help you out with whatever. I think you are very brave and strong. Let me know if or how I can help you.

[vkaplas]

This looks quite a lot like me when I'm having a bad day (I have generalized paroxysmal dystonia). I have no medication (have tried Artane but to no avail). Also, cramps, tics, excruciating pain is an everyday thing. People sometimes ask me to stop shaking and trembling but it is difficult to explain that I cannot.

[oileann1]

@vkaplas This is my everyday life with Dystonia. Various drugs have either not worked at all or made my condition worse. I've all the symptoms you describe but I can't do anything about them any more than you can. Fortunately, people don't ask me to stop shaking or trembling. Best wishes and take care. Paddy

[oileann1]

I've never taken a drug that wasn't prescribed for me by a doctor and may of those drugs caused my dystonia to worsen considerably. Paddy.

[oileann1]

I've never taken a drug that wasn't prescribed for me by a doctor. Most of the medication I was given actually made my dystonia worse and I had to quit taking the drugs. Best wishes. Paddy.

[lftcoco]

have you ever taken any Antipsychotics or Reglan. These meds cause Dystonia and Tardive dyskesia

[wellnessnumberone]

Hi by chance I found your video, and as I say that I know nothing is by chance, I found your video for a reason. I have spasmodic toricollis, I have been dealing with it since 2003. I have tried many things to get well, I believe EFT, Emotional Freedom Technique is powerful. I am healing myself in a very easy non-invasive way, I hope you will give EFT a chance, there are many You Tube videos. I wish you all the best. Love and Peace

[oileann1]

Thank you so much. Can you direct me to EFT videos or further information on the topic.

Wishing you well and thanking you for taking the time to write. Ir is much appreciated Paddy.

[dasey22001]

My daughter Jessica has Myoclonic Dystonia and has all the same difficulties you speak of, She had the deep brain stimulation surgery in May 2008 and we have notice a significant decrease in episodes. She walks without a cane for first time in years. God bless you.

[oileann1]

Thank you so much for writing, I very much appreciate it. Unfortunately for me I'm not a suitable candidate for DBS. I'm delighted to hear that it had a positive outcom for your daughter. Long, long, may it last. Your comment is very much appreciated. My best wishes. Paddy.

[Ersguterplaya1337]

Wish you all the best!

[oileann1]

Thank you for the good wishes. Much appreciated. Paddy

[oileann1]

Thank you so much. Paddy

[oileann1]

Thank you for your good wishes. I appreciate them.

[eddysacat]

Paddy, my name is Andy and I live in Arizona. I was diagnosed with MS last year and when I got out of the hospital I researched MS for many hours online. In the process, I found many other brain diseases/disorders that made me feel fortunate that MS is all I have. Near the top of the list would have to be dystonia. Number 1 are the various prion diseases, number 2 would have to be ALS.....and so on. Is deep brain stimulation an option for you? You are a brave man and you give me strength.

[oileann1]

Hi Andy, thanks for the very kind comment about me being brave. I'm not sure I'm all that brave at all. I cope, just as you do to the best of my ability or should that be disability. Do a Google on me. Paddy Doyle, See what you find.

[oileann1]

Hi Andy. Dystonia is one of those conditions that is a difficult disability to cope with. Of course I accept that every disability is difficult to cope with. Because of experimental surgery carried out of me as a child, I am now not a good candidate for DBS. I appreciate your kind comments about me giving you strength, I'm not sure I deserve such high praise. Best wishes. Paddy.

[fudgesauce]

Just what was God thinking when he made up this affliction?

Maybe He idles away the time watching youtube videos as well and will rescind the order. Let's hope!

[oileann1]

As I don't believe in God, I can't blame him/her for what you refer to as "This affliction". Thank you for writing your comment. It is much appreciated. Best wishes. Paddy

[fudgesauce]

Paddy, I'm a non-believer as well. My comment was mostly a poke at those who contend that everything that happens, good or bad, is part of God's plan. One would have to go through some painful contortions of logic to reconcile the claims of God's goodness with the hardships you endure daily.

However, I live in a land of biblical literalists (Texas, USA) and such terrible things cause them no pause to wonder. They just swallow it down like baby food.

[oileann1]

I appreciate  your comment being a poke at those who contend that everything is God's fault. You can't win! If I won the lottery that would be God's doing and the fact that I end up with dystonia is also God's will. What a crazy mixed up world we live in. Do a google on me. Paddy Doyle and see what you might find. Best wishes. Paddy.

[Elime96]

keep it up man

[GetFeisty]

Thanks for posting and sharing.

Keep it up!

[oileann1]

Delighted to post and share. I will do my best to keep it up!!

Best wishes.

Paddy.

[oileann1]

The purpose of posting the video was to bring dystonia to the attention of as many people as possible. Thanks for your comment. I appreciate it.

[MyMichelet]

You don't get Dystonia from a FLU SHOT- onset of most cases begin at t age t lady is- she probably was right about ready 2 begin signs... Educated people about t disease would NEVER of shown that 2 scare people out of getting a flu shot many people need. Ridiculous!! One of my good friends Donna has had it since she was in her early 20s. It is a genetic disorder & various people in her family have it.

[oileann1]

I understand that perfectly well as I understand the various other points you make about Dystonia.

Best wishes

Paddy

[maddancingcric]

This video was really informative for me. I'd never heard of dystonia before today. Are your legs paralyzed? Also, is that the only way you ever sit in your wheelchair? That doesn't look very comfortable... :( Do you have a helper of some sort? I hope you don't mind me asking all these questions. Your life seems complicated but you seem quite positive none the less.

[oileann1]

Glad you found the video informative. As I keep saying, most people seem to think that dystonia is a former Russian republic. I don't have a helper per se. I've no problem with you asking questions at all. I now sit in a new wheelchair which you can see on my website. Just type Paddy Doyle into Google and I should pop up first. I try to be positive, not always easy but I can only live on a day to day basis. Take care. Paddy.

[wayne2166]

faking

[oileann1]

If you mean the video of the cheerleader girl - then I suspected it was indeed a fake but a very hurtful one to those of us who have the condition. It's no laughing matter at all.

[jstark069]

I have generalized dystonia in my whole left side and right side of my neck. That Cheerleader Girl vid made me soooo angry. And I never get upset, because stress can cause an incident. I wrote that news station went off something epic. I would never wish my condition on anyone, but she was so blatantly faking it, it was disgusting. It's also very difficult to diagnose, and with very painful tests (EMG etc.) My heart goes out to everyone with this.

[oileann1]

That Cheerleader Girl made me so angry as well. When I wrote to the person who posted it and expressed my horror of the video. He replied by telling me to F*** off! It was obvious to me that this girl was faking it but it appalled me that You Tube allowed the video to stay up. It should be taken down and thus stop stressing people out.

Best wishes.

Paddy.

[rosenrotdrei]

so the cheerleader one was fake??

[chrisfur2]

@oileann1 are you talking about that stupid bimbo that said she got a side affect from a flu shot? then they showed her doing the chicken walk.

[therockyroden]

Stay strong.

[oileann1]

Thanks for the comment. I'm presuming it is you Paddy. The reason for putting the video there was to educate people as to what Generalised Dystonia was about. I had ten minutes to do it, but that wasn't enough. Best wishes and thanks. Paddy.

[mapleclose]

Thank you, Paddy .. I had not even heard of Generalised Dystonia until our chat yesterday ... I now have an awareness .. thanks .. hopeb to chat again soon (after YOUR busy today has ended)

[dtmbcorp]

Thanks for sharing your experiences with us.

[Loonatiks3]

Hope you're doing okay Paddy. :-)

[oileann1]

Thanks so much for the comment. I am doing alright or put another way, doing as well as can be expected given the circumstances I have to cope with. Take care

[oileann1]

I too hope the right people see it and that those of us with Dystonia will be afforded a better quality of life. I'm not seeking miracles, just something to make life a little easier. Take care and thanks. Paddy.

[kaazoom]

Thank you for posting this Paddy. I hope the right people see it and it makes a difference. Good to see you have a still have a sense of humour despite all of your difficulties.

[oileann1]

Thanks for your comment on my video. I made it so that people might gain a better understanding of Dystonia and all that it entails. My hope is to make a few more video's in the next while. Best wishes. Paddy.

[bennasdwarf]

Hi- thanks for your posting this video. I am familiar with it and am happy to see I am not alone in it or trying to make people understand it better. Your welcome to watch my videos. Mine isn't quite as progressed as yours, but I certainlyy understand what you mean by a different life than what it is for others.

[Cosmodot256]

You're truly a scientist of your own specimen. You have my sympathy and your video has captivated my interest in your ailment. I think the world is full of capable people with a capacity for a personal and/or intuitive understanding of pathology due to the increase of information available to society made possible by videos just like yours. It also increases public awareness of the disorder as being something set far apart from general intelligence and stability of mind. You obviously have both.

[eeveeREALLYsucks]

not from a year ago, fuck Google

[oileann1]

Hi there, I'm desperately trying to remember where it was we met and in what circumstances. I appreciate very much the kind comment you've posted. Thanks for doing that. Stay well yourself and have a wonderful Easter.

Best wishes

Paddy.

[johnnysno1]

Hi Paddy,Hope al is well for you at present,just wanted to say I wish for you all you wish for yourself,your a great guy who has my total respect,I met you several years ago in Dublin and was amazed at your courage and determination and here you are still getting a message out there.Stay well Paddy,Oh, and have a great Easter.x

[oileann1]

I wouldn't be an ideal candidate for DBS given all the surgery I had as a child and besides, I don't believe it's all is made out to be. I wish you luck with the neurosurgeon on April 2nd. If surgery is offered to you and you go ahead with it, I hope it will be a complete success.

Best wishes.

Paddy.

[KILLAMANJARO3]

have they fofered you dbs (brain surgery) to stop the movements? I have essential tremor with POSSIBLE secondary neck dystonia (cervical dystonia). i am meeting with a neurosurgeon april 2nd, finally to discuss two different surgery options. 26 years later for me!

[oileann1]

Hi there. I've plans to do another video. I'm amazed at the number of viewings my first one has had, almost 12,000 last time I looked. Take care and thanks for posting a comment.

Best wishes.

Paddy

[bracefanx]

Hiya Paddy, hope you keeping well mate. Looking forward to another useful video from you. Anything in the future? Cheers

[oileann1]

Thank you for such a kind and sensitive comment. Please do share the video with your colleagues and by doing so you will be helping those of us with Generalised Dystonia to be better understood and perhaps to find a treatment that will alleviate the tiring symptoms associated with the condition.

Thank you

Paddy.

[and4414]

no entiendo mucho lo que dice realmente... pero las imagenes alcanzan... te felicito por tu valentia al mostrarnos este video...

Soy estudiante de Medicina, y con gusto lo compartire con mis compañeros.. Gracias! :

I do not understand much what he says really ... but the images reach ... I congratulate you for your courage in showing this video ...

I am a medical student, and we will share it with my colleagues .. Thank you!

[and4414]

no entiendo mucho lo que dice realmente... pero las imagenes alcanzan... te felicito por tu valentia al mostrarnos este video...

Soy estudiante de Medicina, y con gusto lo compartire con mis compañeros.. Gracias!

[oileann1]

Pity I don't understand the language but thanks all the same for the comment. Gracias!

[bracefanx]

thanks, well as I say keep it up man! just by the way - you are really sexy :-)

[oileann1]

Thanks for the comment and thanks for the comment!!!:-)

[bracefanx]

Just a quick one to say hello - thanks for the videos they are so useful and informative. Stay strong mate :-)

[oileann1]

Thanks for the comment, I appreciate it. I'm glad you found the videos useful and informative. I will do the very best I can to stay strong. It's not always easy.

Best wishes

Paddy.

[oileann1]

You can contact me through my website. Just do a search for Paddy Doyle+Dystonia on Google and email me from there. I do not believe that you can tell anyone how to recover and furthermore, I believe it is a dangerous suggestion to make.

[nonsulen]

I still deal with pain from the damage the condition caused to my neck but that only lasts a day or 2, most of the time advil takes care of the pain. Contact me and I will tell you how to recover.

[nonsulen]

Hi. I recovered from dystonia. Don't let the doctors tell you there is no hope and do not let then drill holes in your head. I believe everyone can recover a minimum of 95%. I was told I was heading towards a wheelchair, well 1yr later I walked into the doctors office and told him he is a lier and from here on he will not be using my money to buy his new BMWs. Its been 4yrs now and no dystonia.

[oileann1]

You're obviously one of the lucky ones. I've never heard of anyone recovering from dystonia. I wish you all the luck in the world from here on in. It's too late for me now with regard to the "holes in the head". I had my head drilled when I was a 9 year old child. I am now a wheelchair user. No point in recriminations.

Thanks for your comment.

Paddy

[oileann1]

I just do the best I can to manage pain. I've tried to many things that nothing makes much difference. With regard to the treatment of Dystonia, I've tried every drug from A to Z without any success and without any improvement. In fact in most cases the meds made the Dystonia worse. Paxil is a drug I'm familiar with. I was told by my then Neurologist to stop it without even easing down. It was a horrendous experience, one I wouldn't wish on my worst enemy. TEN DAYS OF HELL.

Thank you.

Paddy.

[nonsulen]

Hi. I recovered from dystonia. Don't let the doctors tell you there is no hope and do not let then drill holes in your head. I believe everyone can recover a minimum of 95%. I was told I was heading towards a wheelchair, well 1yr later I walked into the doctors office and told him he is a lier and from here on he will not be using my money to buy his new BMWs. Its been 4yrs now and no dystonia.

[zkorpioz]

What about the pain? How do you manage that?

I have experienced dystonia, but in my case I couldn't control my whole body... mouth, eyes, nek, abdominal muscles, back muscles, legs... I don't remember if my feet were also doing that.

And all this was because I stopped taking Paxil (Paroxetine); I forgot to ask my doctor for more refills. Second time was when I tried to quit the drug... and then that's when I realized it was Paxil withdrawal causing that!

[dystonia64]

I'm not quite sure what to say. Seeing you makes me cry and reminds me of my pain and wondering what my life is going to be. I've already lost so much.

My disfigurement greatly resembles yours but also involved a retrocollis (pulling backwards of the head) which caused me to loose the hair on the back of my head and wear hats.

I want to be careful about what I say but I have felt very frustrated with the medical community as to the treatment I received in my 5 hospitalizations.

[oileann1]

I often think when one is unsure of what to say that it's best not to say anything. I don't say that with any degree of smartness but with sincerity. There have been many times in my life when I've said that there is no glamour in being disabled and that it's not a good "hand of cards to have been dealt"

I fail to understand why those of us with disabilities so often find ourselves afraid to be seen to be critical of the medical profession. Constructive criticism is healthy.

[oileann1]

Thank you for your comments. There is no doubt that GD is difficult to cope with. We would all prefer not to have a disability. The fact is that we have. The best we can do, given the complexity of Generalised Dystonia, is to try and live within the confines which it places on us. I'm a great believer that knowledge is everything. The more we know, however frightening, the better prepared we are for what lies ahead. Thank you for you kind comment regarding my courage. It's not always easy!

[Cosmosis]

I just wanted to add that I have been a coward, & in denial that I even had a diosability. Your courage is inspiring. Thank you for helping to raise my awareness of generalized dystonia. I would like to contact you at length but YouTube doesn't allow a person to say much in a comment. From what I have seen so far each case of dystonia is different, but I can realte the most to yours. I am sorry that we have this disorder, but it's good to finally know that I'm not alone like I thought I was.

[Cosmosis]

I was in a serious car accident 13 years ago that left me with a neurological disorder that nobody seemed to be able to treat or diagnose until today. I came back from the neurologist and started doing some research on GD, as that was what the doctor told me I had. For years I have been ridiculed & mistreated by others for something I have no control over. Thats almost worse than the pain. My condition is progressing & I'm a bit scared, but with knowledge there is hope. God bless you.

[paddydoyle51]

Lene. Sorry to hear you've been unwell. I look forward to hearing from you when you feel like writing. In the meantime, take care and get well. Best wishes. Paddy.

[Selah7777]

Paddy I have been ill these last few days and cannot do much at the computer but will write soon. Lene

[Selah7777]

I am wanting to communicate with you, Could you please give me your e-mail address? I tried to hear what you said but could not hear it right. BTW I have Spasmodic Torticollis/w Tremor

[paddydoyle51]

I would be happy to hear from you. You Tube doesn't allow a person to post an email address here. I have tried to post the email address but without any success. If you look at my video, you will see my website address if you log on to that you can find my email address by clicking on "contact me" at the top of the first web I look forward to hearing from you.

[candernut]

I appreciate that you were courageous enough to put this video on you tube. I am a nursing student and learn better visually. Watching your video helped me to be able to learn the differences between dystonia, tardive dyskinesia, and pseudoparkinsonism. Thank you again and God bless.

[paddydoyle51]

That you for your very kind comment. I appreciate it. My feeling was that by putting the video of myself on You Tube it might help people to understand more about Generalised Dystonia. It is as you know, a very misunderstood and misdiagnosed condition.

My best wishes to you.

Take care

Paddy

[paddydoyle51]

People like you shouldn't be allowed comment on anything. Now your blocked and reported.

[EpIdEmIcViRuS]

you know what i was being sympathetic and i did cry so fuck you asshole....unapreciative jerk

[EpIdEmIcViRuS]

i cried this whole video.....i feel horrible for ever laughing at this disorder:'(im sorry

[paddydoyle51]

I doubt you did cry while watching the video I put on You Tube. Why would you ever laugh at someone with a disability? Also why had you not the courage to leave your comment visible on here. If it's worth saying, it's worth saying out loud and allowing people to see what you're saying.

Best wishes

Paddy

[paddydoyle51]

I look forward to hearing from you and to seeing you be it the New Year or this year. Do please email me via my website and let me have your personal e-mail address

Best wishes

Paddy

[paddydoyle51]

Hi Graham. Good to hear from you. I remember the exchance of emails well.

Yes, I do remember Martin Hoban well. Give him my best wishes. Now the idea of a few pints sounds like a very attractive proposition. Say the word and I will do the best I can to be around. What plans have you in mind?

Medicine being the most inexact of all the sciences, it comes as no surprise to me to read that the medics got it wrong.

I'm still banjaxed but let that not get in the way. Thanks for making contact. Paddy

[plummer51]

Hi Paddy

I'll have a chat with Martin and see what we can sort out. It may have to be in the New Year. I'll e mail you again via your other website and send you my personal e mail address.

Best,

Graham

[plummer51]

Hi Paddy

We e mailed each other a few years ago, talking about the Social Model and stuff.

Do you remember a guy called Martin Hoban - I worked with him for a few months and he sends his best. How about we both come over from Cardiff to visit you and share a few pints? Both my kids, 11 and 19 have got dystonia - I have cervical d - and the medics said is wasn't genetic!

Hope you're OK and not too banjanxed (as you said to me last time!)

Best

Graham Findlay

Wales

[paddydoyle51]

I wish your brother Tony every success with his DBS surgery. I hope everything goes well for him and that he will emerge from the surgery with a new lease of life as well as a great quality of life. Than you for taking the time to write to me. Alas! I won't be a candidate for DBS to to many experimental brain surgeries when I was just a nine year old child. You'll find more about that on my website if you wish to go there.

Best and warmest wishes

Paddy.

[chilloutdani]

I watched this with my brother Tony that also has dystonia. We will be going to Swedish Hospital in February for him to get DBS surgery. Hopefully you will be able to get relief from same treatment. God bless and stay stong.

[CherylSpeaksOut]

is yours geneic, it looks like it

[paddydoyle51]

Yes, as far as I can ascertain, my dystonia is genetic however I can't be sure of that as I went through a lot of experimental brain surgery when I was just a nine year old child.

[CherylSpeaksOut]

hi Paddy, ok, you give me hope, as in I am not alone, I cant survive without help, I know about the surgery I wouldn't want it I don't think they have done so much damage already. I do hear of it being helpful tosome degree for others including parkinsons, I will look for camcorder with remote control and that has tilt on it and not too heavy. I will upload more as able, much I am doing as well is evidence I have saying different than on my records,

[paddydoyle51]

It's very kind of you to say that I give you hope. Whatever help I can give I will. The surgery I had is not like the modern day surgery that does help people. The surgery I had can be found on my website the address which I've given you in a previous comment. Most of the modern day camcorders are very light so you should be well able to manage it.

Best wishes and take care.

Paddy

[CherylSpeaksOut]

I have secondary myoconlic dystonia caused from pschyatric medications,mine isn't on my files. I have just been left here like this and whoel body damaged.

I have been wanting camcorder, but can't lift much, and was thinking if htey had remote control, so saying yours does, can you leave or send me what make and model it is, I need ones current of the condition I am in and go through every day not on my medical records, well it is or not, as psychatric to cover for them

healing love

cheryl

[gargos25]

hey paddy, I have the same shit going on... I only do it when I am alone though because parents taught me it was something bad... don't worry mate, I actually think the problem lies within some tiny blocked nerve... Yoga and a healthy spine will definitely help us... I am starting soon

Don't forget: TAKE IT EASY, all people are different consciousnesses of the same THING

[paddydoyle51]

Thanks for the comment.If the problem does as you say, lie within a blocked nerve, would you please pass that message on to neurologists around the world. I can't manage Yoga and as for a healthy spine, well mine is wrecked as a result of years of being pulled and dragged around as a consequence of dystonia.

Perhaps you explain the last part of your comment as I don't understand it.

Best wishes.

Paddy.

[gargos25]

well, I wouldn't trust conventional medicine on solving this issue (if I would at solving any issue). Searching Google intensively helped me a lot with solving my posture problem, which causes a very wide range of modern "civilization" diseases. Real yoga seems to heal nearly any issue. In your situation, I would definitely give it a well aimed shot (alternatively, visiting a quality native guru may bring a solution).

I'm interested into the holistic way, therefore the ending of my last comment

[paddydoyle51]

Believe me, I've tried ever way, conventional as well as holistic to try and beat this bummer of a condition. Nothing worked. I've been on ever drug from "A" to "Z" they all failed me as well. Tried Yoga as best I could and it did nothing, meditation and so all all failed to bring even the most minor or improvements in my Dystonia.

Having said all that, I agree with you that a holistic approach is the way forward. If it works for you, then great. I didn't for me.

Paddy.

[gargos25]

I wish you all the best, mate...

[paddydoyle51]

Thanks for that. Much appreciated. Best wishes.

Paddy

[jgh548]

Paddy - thank you for this video, I hope people take notice of it. I am 28 and have Dopa-Responsive Dystonia (Sinemet relieves my symptoms but I have no degeneration of the Basal Ganglia, so not Parkinson's). My symptoms are similar to yours, although nowhere near as severe. I appreciate your struggle and I think much more needs to be done to raise awareness of this bitch of a disease.

[paddydoyle51]

Your comments are very much appreciated. I decided to post the video to show people how difficult the simple things of life can be when one has a 'bitch' of a disability like dystonia. I've been tried on every drug from "A" to "Z" and they either made my dystonia worse and/or made me violently ill. I agree that much more needs to be done to raise awareness of dystonia. Few websites if any, deal with the generalized form of the condition. That to me is a shame. Paddy

[jgh548]

Paddy, have you thought of taking this to the press?

There's so much awareness of Parkinson's now, but not Dystonia.

[paddydoyle51]

I have indeed thought of taking it to the media/press but they're not interested. Dystonia is not regarded as a "sexy" disability and the press thrives on "sexy". Mention Dystonia to a media person and they think you're talking about a Russian Republic like Estonia! Thanks again for your comment. Paddy

[oileann1]

If I thought the press would take an interest in Dystonia, I would most definitely take it to them. The fact is they aren't. Best wishes. Paddy.

[DurtyDominican]

you're completely wrong they just did a story on a woman who developed it from a flu shot... so perhaps you should take it to them while its hot along with your best wishes

[cooldocmom]

Yes, and I believe that woman has psyhogenic dystonia ( I don't mean whe is making it up, I mean that it is caused by a psychological issue of some kind) Notice the big differences between her and Paddy: how symmetric, rythmic and coordinated her movements are, and how good her balance is. It would be good to bring attention to the valiant struggles of those with this illness, but I'm not sure this woman is the way to do that..

[wayne2166]

its not psychological its the way she is reacting to the drugs

[Maysey1]

My dear friend it must have taken a great deal of courage to share this with us and my sincerest thoughts and prayers go out to you. I've never heard of this disease and I'm sure it's a good thing for you to share this with others. We should all be very grateful for all that we do have and more compassionate to those with disabilities. A special thanks to PressPlay2Go for sharing this. Have a peaceful day and please listen to my song I've posted above. your friend! Mark

[paddydoyle51]

Mark, thanks for the comment. It is much appreciated. What those of us with disabilities need more than anything is not so much compassion or a 'hand out' What we do need is a 'hand up' and to be treated as any other member of society would be treated. Nothing special, no pity.

Take care and be good to yourself

[wasswitchu]

my prayers are with u

[paddydoyle51]

Thanks you for you're comment. It is appreciated.

[foryoutulips]

My heart goes out to you. Wish you many blessings.

[paddydoyle51]

I appreciate your comments and thank you for them.

Take care and accept my best wishes.

Paddy

[bethabq]

Thank you for sharing Paddy. It looks like that was quite a struggle for you. Are all your activities so difficult? You seem to have much better strength in your arms, do you have paralysis in your legs? Will you be posting more videos?

[paddydoyle51]

I've been trying to post a message to you for ages but it just didn't work for me. Perhaps this will work. Activities are difficult. I do have good strength in my arms and don't have paralysis in my legs though they are weak. I hope to post more videos.

[youngbethabq]

So sorry we have been able to get in touch. I am back online now, hope to chat with you soon.

[oileann1]

I look forward to hearing from you and to chatting soon. In the meantime, take care. Paddy

[hotlez008]

so i have asked several people with dystonia this and have yet to recieve an answer, does massage therapy help at all?? isnt part of dystonia similar to a form of spasms

[paddydoyle51]

As far as I know Massage and stretching of muscles does help. The problem is trying to find someone that is familiar with Generalized Dystonia to carry out such massage or physiotherapy. I've tried and failed.

[hotlez008]

aw im sorry about that. hopefully you have better luck

[Newmann76]

Thanx for sharen

[paddydoyle51]

Delighted to be able to share. Paddy

[wiscsuzski]

Well done. I hope this video proves to be worth your great effort.

[paddydoyle51]

I appreciate your comment and thank you for it. Best wishes. Paddy

[fuckoffycus]

Thanks for sharing Paddy, I had never before heard of Generalized Dystonia until you posted this vid. Very informative, and for those of you who are in the medical profession, take note! I look forward to seeing more of your vid's Paddy; your strength is inspirational *****

[rooarcamun]

Paddy, I am so pleased to see you are still making noise, and this is this kind of noise that will make a difference. It is time the rest of the world appreciated the very real difficulties and trauma you and others who have dystonia have to deal with on a minute to minute basis. I hope the people who are able to make a difference get to see as well as read your work. Glynne

[paddydoyle51]

Thanks for the comment Glynne. We'll manage to put Generalized Dystonia on the map yet.

[jendorn]

Thank you so much for sharing what life is like for those of us living with generalized dystonia. We need more awareness particularly amoung the medical profession. Your relationahip with your dog is remarkable. The bond is strong and it is great to see his love for you. Keep up your great work.

[paddydoyle51]

Jen. Misty sends her best wishes. She's the good looking girl with the nice sleek black coat in the video!

We'll put Generalized Dystonia on the map yet. It's time people knew it does actually exist.

Best wishes

Paddy

[nyprincess10001]

Great Job. Glad you are getting the word out to help others.

[paddydoyle51]

Thank you. You're comment is much appreciated. Paddy.

[PressPlay2Go]

Astonishing. Yes it has significance.

[adelfred]

This video says a more than all the info you can find on the net.