question below

Was talking to my cousin today. She lost her sister to PD recently and we were saying that people think that the only symptom of PD is a tremor and do not realise how devastating its effects can be,,

Does anyone else feel that PD is misunderstood and does not get the understanding of other diseases, for example MS? Anyone with PD knows how cruel it can be and the many various forms it can take.

I would be interested in other people's experience when they tell people they have PD. I have had ot for 6 years so can speak from experiemce.

12 Replies

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  • Well I'm not sure where we are going with this...but I consider MS a tough diagnosis because it blinds some patients and I think it is fatal to them too.....ALS (Lou Gehrig's disease) is fatal in less than 2 yrs is my understanding....Alzheimer's eventually is fatal after it has hollowed out all of a patient's memories...it must be awful !! All of these are brain diseases like PD.

    I really think we need to focus on having a good life for however long it will last and I suggest you try hugging all family members which come home this Christmas Holiday because while the vengeance of PD may not be swift PD is a tough diagnosis that needs a breakthrough in treatment too. Both Alzheimers and MS had big breakthroughs in treatment last year so perhaps 2012 is the year for the PD break.

    We should all write a check to MJFF here before yearend while the Brin/ Wojicky (google) matching funds are available. This is because MJ Fox Foundation is committed to research for a speedy "cure" and Sergey Brin (think google co founder) is committed to match all Fox donations received in 2011.

  • I was in no way meaning to suggest that MS is not a very very nasty disease as also are Motor Neurone. Huntingtons Disease etc but to make a comment that many people have no idea of the devastating effect PD has on sufferers and carers. You have to experience it to understand it.

    I just wish it was possible to raise the profile of Parkinsons to make more people aware that it is 'not just a tremor'. I make the most of each day and will keep on fighting to stay active.

  • Court

    Yes i think PD is misunderstood and largely unknown. I feel responsibility to be a part of changing public perception. Being involved with Parkinson's Movement is very important to me for precisely that reason. It is PwP working together to make a difference.

    PDdiagat40 Thankyou for the reminder about MJF foundation, while in Britain we also support the Cure Parkinsons Trust a dediated organisation committed to PD research.

  • Thanks for your comments. You seem to understand where I was coming from. I also find the Parkinsons Movement very important and it makes me feel that other people understand what it is like to have PD. It certainly is no fun!

  • PD is much more then tremors. I have had this disease since 2003 and I have no tremors. Everyone's symptoms are different and have other hidden symptoms like sleep disturbed, depression, and many other behavior problems. I write about these in a book called Parkinson's Disease, Looking Down the Barrel. I was even suicidal at one point. Better now! You have to understand the hidden problems related to get the right help.

  • I know that PD is much more than tremors. I have seen it totally incompacitate a person, stopping them from swallowing, talking, moving, and robbing them of everything we take for granted. In short, taking away all quality of life so that the end was a blessing.I know that this was an extreme case and that PD takes many forms under the umbrella of PD.

    My own form mainly consists of tremors, but I also get depressed, frustrated and want to be me again. I get on with my life. Walking my dogs, looking after two young grandchildren

    children, etc and find exercising a bonus. I think I make the most of what life has dealt me.

  • HI I AGREE THAT PEOPLE MAY NOT REALLY UNDERSTAND THE NATURE OF PD - I WAS DIAGNOSED IN 2010 AND WAS ABLE TO WALK THEN - I NOW AM IN A WHHELCHAIR WHEN I=OUT AND A WALKER IN THE HOUSE THOUGH I STILL HAVE MANY PAIFUL FALLS - CURRENTLYY HAVE A BLACK EYE AND A SMASHED KNEE I HAVE NEVER HAD TREMOR THOUGH - SO YOU SEE HOW IT VARIES FROM PERSON TO PWP

  • Yes. I make it a point to explain to people that I have PD, no tremor, but pay no attention to my groaning, clutching my ab, thrashing of leg, etc. I go to a great Parkinson's exercise class and in chatting with my classmates we find PD to be a designer disease--different for everybody. Most are keeping busy, but one man burst into tears in the class thinking of what he used to be able to do.

  • I can totally relate to these comments. Every case is different. My Consultant told me that no two cases are the same. Perhaps this is what makes it difficult for people to realise how serious it can be.

  • I have fibromyalgia and chronic fatigue along with my PD. I also have had tremendous, unrelenting low back and hip pain since 2002. No one seems to pay attention when I tell them that my memory is bad and mostly in the afternoons I feel confused. It's like everything is separated among the specialists instead of being treated as the whole person I am. I don't know who to ask about what with. That is my frustration. Therese

  • Poor you. How do you cope? Constant pain must be so tiring. Perhaps you should ask for a referral for a 2nd opinion. My memory has its moments too. I think it is to do with concentration. Hope you get some answers soon. Stay strong and fight your case, no one else will do it.

  • You're right about that Court....only I will fight my case. The constant pain is very tiring and very frustrating. I too have crying spells at the things I no longer can do like hiking, etc. My frustration at my pain has invaded my home activities like cooking, cleaning, etc. because I can't stand up for more than a couple of minutes. So my way of being proactive is to keep pushing for good health care and on the internet whether that's just through encouragement or helping someone to come out of their own darkness and into their life - to thrive in their life as much as possible. Teaching my grandchildren, who are young, how to live their lives positively and with joy, how to be compassionate and helpful. This way I have given my life purpose whether its a short life or not.

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