S H O U T O U T L O U D !

[JonStamford]

As you know, we frequently run polls on this website, on all aspects of patient experience. That's after all the point about PARKINSON'S MOVEMENT. We seek to represent the voice of patient community.

And we do make sure that that voice is heard. The data from polls conducted here will be presented at the World Parkinson Congress in Montréal in October. Your opinions will be presented to a global audience of some 5000 top doctors and scientists in the field. You will be heard.

But there's the rub. You will only be heard if you answered polls. Yet strangely as many as 90% of you do not. Sure, some polls are just for certain subgroups but most are for everyone. So surely you would wish to be heard rather than suffer in silence.

Wouldn't it be great if we could show the decision-makers data from thousands not hundreds. And there's no reason why not. There are thousands of registered users on this site. Let's hear from you. Don't be shy. Your opinion matters.

The decision-makers in Parkinson's, whether politicians, doctors or scientists can only respond to what we tell them. If we are silent, then we forfeit the right to change our own futures. If we want people to listen to us, we have to speak loud and clear.

We started PARKINSON'S MOVEMENT because we are people with Parkinson's who wanted to make a difference. Two years on, that still stands. WE want to tell the Parkinson's world what YOU think. We can only do that if you tell us.

So please use the polls. It takes only a few seconds to tick a box. A small step on its own. But when thousands do the same, a giant leap for our community.

[isis6361]

We can only improve care and knowledge in our approach to Parkinson's if we truly know what the issues are from the population themselves. There are no books to guide us or DVDs that help us impact on improving you QOL unless you guide ys

[soup]

I am a carer for my husband who hardly needs 'caring' for yet. With my husband I run a group for people of working age with Parkinson's in Cornwall (UK) and am a member of the committee of the Mid Cornwall Branch of Parkinson's UK.

I have found that surveys, from whatever source, are rarely aimed at me. In carers week in UK I get one or two but more often, after the first question or two, I am asked to be the fingers for a person who can't complete the said survey because they have Parkinson's.

I have tended to block out the whole idea of surveys because in the past I have felt that they were not aimed at me and it was not seeking my opinion or experiences. I hope I have been wrong and that this site will provide an opportunity for me to voice my opinions, setting up cares' surveys too. I shall look more carefully next time.

Thanks

Sue

[JonStamford in reply to soup]

Sue, really good to hear from you. I was at a meeting on Monday where we talked about carers as an unheard voice. We need to change that!

[JohnPepper]

I am all for the gathering of information! I have had Pd symptoms for 50 years, but have only been doiagnosed for 21 years. For the past 10 years, nobody would know that I still have Pd, although id still have many of the symptoms. Many doctors say, without ever having examined me, that I do not have Pd, because of my current condition. I can understand that, but do not condone it. They are very unprofessional, making statements based on my current good health.

There is obviously a lot we do not know about Pd, and the only way we are going to find out more about it is to ask questions of those who have got it. We can only get existing knowledge from the doctors, not new knowledge.

I can understand the pharmaceutical industry not being excited about a Pd patient no longer needing to take any Pd medication. I can also understand doctors not wanting to lose their Pd patients, but the truth needs to be examined and we need to learn from it.

Keep the good work up!

John

[Hidden in reply to JohnPepper]

Doctors are very good at making judgements on patients, but often not very good at making a diagnosis.

[tlongmire in reply to JohnPepper]

John what are your PD symptoms? What has changed the past 10 years to improve your PD? I seem to be progressing quickly. Having real problems with my voice and lately a tingling sensation in my legs. They also seem to tire more easily. I also move very slow, have problems with fine motor skills and horrible neck pain.

Terri

[JohnPepper in reply to tlongmire]

Hi tlongmire

I am not a doctor, just a patient! My current Pd symptoms are: Insomnia; constipation; clumsiness; low libido; erectile dysfunction; I bite the inside of my mouth and tongue; get confused with left and right; choking; too much saliva; daytime sleeping; flexed toes; flexed calves; frequent nighttime urination; inability to handle conflict; balance problems; Rigidity; typing problems; unable to walk properly on uneven surfaces; cannot write properly; poor word accessing; irritability; unable to realize that I am cold or overheating; poor muscle coordination; I perspire profusely when doing simpe things; I cry for nothing. This may appear to be a lot of problems, but I regard myself as healthy. I don't take any medication for any of these problems, I have learned to live with them. I am 78 years old and hope to live for many more years.

John

[cabbagecottage in reply to JohnPepper]

I have just re read this comment are you sure you are not talking about my husband , he has EXACTLY the symptoms that you have ......

[tlongmire in reply to JohnPepper]

Amazing! I have many of those problems but only diagnosed since 2010.

[cabbagecottage]

Hello Pepper. My husband is 79 and was diagnosed eventually about 7 years ago .

Nothing will persuade me different than I believe my husband was born with it . When we first met 60 years ago he use to say that his father would tell him he was useless . He wasn't a bad father it was just the f,act that he was awkward and clumsy couldn't tell left from right sometimes . Now we have lived a perfectly normal life but he was USELESS LOL SO many things he would get back to front , he would tell me he could only run up a slope I would have a job to keep up with him . When we dance he would suddenly swerve or reverse , diFficult to explain .

He held an important Job down as a press and information officer for large company's . He wrote prolifically , I use to joke that he was only manually dyslexic .

Now he is mostly in a Wh.eelchair , each time we go now to the consultant they say he is doing well and his Parkinson's isn't very bad , He takes SINEMET and uses the rotigotine patch which don't seem to be a bit of help I could throw them all away .

His knees are a big problem has already had some knee surgery which doesn't seem to have helped so difficult to know how much is the pain on walking or the Parkinson's . It is a minefield .

Really glad you are coping and doing ok .

[PatV in reply to cabbagecottage]

has he had physical therapy or massage? Can he get knee replacement?

I know in my 10 + years with dx PD, it's not the PD that's laid me low, but the injuries and procedures. Twice I was convinced I was housebound, and a walking course convinced me I could walk . i live alone and rarely have help. It's a struggle.

[JohnPepper in reply to cabbagecottage]

Hi cabbagecottage.

Some of what you have told me about your husband has happened to me. Like him, I was a clumsy child. I often (not always) turned left, when I was told to turn right. I found difficulty reading, right up till the age og 26, when I read my first book. I failed my final school exams, but became a very successful entrepreneur. I won a scholarship to an English Public School, at the age of 10, but was unable to read properly.Was I dyslexic? I don't know! When my Pd symptoms first started in 1963, when I found that I was unable to throw a ball properly; was it Pd or was it something else? Who knows? None of us can say for certain what Parkinson's really is. Only we can know what is happening to our bodies. We should be careful before we blindly do what our neurologists tell us! They are very busy people and don't have time to really get to undersatnd what we go through every day. We have to take responsibility for all of our actions, including putting toxic substances in our mouths. If our bodies do not get any benefit from taking a medicattion, then stop taking it! I cannot tell you how much money I have thrown away on medication that does not do what the doctor has claimed it would do. Why can't we refuse to pay for medicine that does not work? Why can't we demand our money back, when an operation is not successful? Do doctors not demand their money back if the car they purchased does not work properly? Should we not stand back and take a good look at our relationship with the medical profession?

John

[paddyfields]

I too have a sneaking suspicion I have always been low on dopamine. When I was child I had what can only be described as a mask like expression in repose. I was always physically slow - PE teacher commented slow to get going at 2y school. I could never write fast enough to finish exams. I see to have had to teach myself things and to speed up which others do automatically I can clearly remember realising as a child that other people's faces reflected their thoughts more than mine and so I deliberately taught myself how to "twinkle" so to speak. . One theory of PD is an event earlier on depleting the more than enough dopamine which people usually have in their body and then with the passing of time and the natural depletion of dopamine with age, the symptoms emerge My progression is slow and the PD is straight forward. Most people don't realise I have p unless I tell them although without the Sinemet plus they would soon notice. I was dx 4 years ago..

[PatV in reply to paddyfields]

me too!

[paddyfields]

Hi PatV. Turning into an interesting subject. You could of course be born with less cells and/or dopamine.. Another PD theory relates to stress and cortisol and I certainly have had loads of stress with the family I was born into.

[paddyfields]

Hi PatV. Turning into an interesting subject. You could of course be born with less cells and/or dopamine.. Another PD theory relates to stress and cortisol and genetic susceptibility and I certainly have had loads of stress with the family I was born into.

[cabbagecottage]

we're any

of you breach born , my husband was . and was put at the bottom of the bed while seeing to his mum , it was a home birth in those days , they told get they were not sure he would live but he has to tell the tale lol

[cabbagecottage]

get should have read her ! He has already had a patella femoral replacement and the an arthroscopy about 6 months ago but he is still getting severe pain whenever he stands or walks , he cannot put it under any load . They have said it is arthritis but doesn't need a full replacement , he cannot take any strong pain killers only Paracetamol because he is on Warfarin . I have tried creams to rub in but then his skin flails up . Yesterday I have tried a new gel Pernaton . His sister uses it and it helps her enormously . I really want to see if the pains eased how much difference it would make to his Parkinson's walking , if you understand what I mean .

[export]

I have always been told that no 2 PD are the same. maybe you should look

at the meds what is good one is not good for ever one

[cabbagecottage]

For some reason or another the consultant has been loathe to ever try anything else for my husband , I really wish they would because what have yo got to lose .

Our consultant has recently retired we have been with him from the start , they haven't replaced him as yet so maybe anew broom will sweep cleaner . We can only hope . Unfortunately the Gp who has been very supportive has also left out clinic so we do feel a bit in Limbo . Will let you know how we get n with the cream if it works for him it will work for anyone . lol

[Odette]

In the beginning I answered eagerly to all the polls, Nowadays I rarely visit these pages; just when something interesting occurs. Some polls are hard to answer because there is no alternative that matches in my case. Then I don`t answer.

For ex. it is assumed that one is either less or more creative than before P.D. I think I`m as creative as before P.D.

[DianneWengert]

How do I take the poll?