Shooting ourselves in the foot?


#1
http://www.parkinsons.org.uk/about_us/news/news_items/all_news/fundraiser_alex_flynn_on_bbc.aspx

This is a truly inspirational story. Alex is an incredible individual. We try so hard to present Parkinson's Disease positively. One reason for this is to reassure people newly diagnosed with PD or with other similar neurological conditions that life goes on and it is still possible not only to live your life but to continue to set yourself challenges and push yourself to achieve.

However, here is some food for thought. It is a fact that charities are more likely to raise funds if they put a positive spin on the publicity for their cause: uplifting stories like Alex's are more likely to inspire people to dig deep in their pockets than are dour and tragic stories which emphasize the uncomfortable, painful, frightening and sometimes downright bizarre aspects of this condition. We need these funds to finance research, support projects, etc etc. But are we in fact shooting ourselves in the foot?

I wonder how many people with Parkinson's have experienced the particularly hurtful belittling or mocking of their condition not only by ignorant strangers but by members of their own families and by people close to them. Accusations of hypochondria, dismissal of the seriousness of the condition, requests to 'pull yourself out of it', comments such as 'it's just a bit of a shake'. A consequence unforeseen by me of the publicising of incredible acts of courage and endurance such as Alex's is this ignorant and hurtful belittling of what is, and I'm not going to pull any punches here, a relentlessly cruel, frightening, debilitating and often humiliating disease. Pain, paralysis, inability to swallow, fear of choking, uncontrollable tremors which rack the body relentlessly, excruciating dystonic cramping and twisting of muscles, nightmares and night terrors, hallucinations, extreme fatigue, loss of independence, and medication side effects which can be almost as horrific as the symptoms of the disease itself.

Are we putting our energies into staying positive, raising lots of money, sharing inspirational stories of courage and fortitude, at the expense of making the lives of those of us with this condition a little bit easier by educating, creating empathy and understanding about Parkinson's among the wider public who are fortunate enough not to have been cursed with this awful degenerative neurological condition?

#2
Well said!

#3
I think touched on this before regarding the positive presentation of PD during radio publicity I think it was. It covers a range of issues from people thinking PD patients have little to complain about to mobility tests assuming we are always in a state of complete, useful medication.
Whilst I am really impressed by some people's feats of endurance and I am grateful for their efforts on my behalf there are a load more people out there who cant stagger to the bathroom. I have no idea what presentation brings in the most money but both sides of the story need to be told.

#4
Thank you, Pokermid and SF, for your comments. I wrote in a real fit of spleen. A relative of a friend of mine had chosen to hold up Alex's achievement not as evidence of his extraordinary qualities as an individual, but as proof that PD is a pretty minor ailment, well-controlled by endless choice of drugs.

I wonder how many pen pushers at the DWP share the same opinion?

#5
Hi Guys,

Unfortunately with any condition in life, the only people who 100% know what is happening are the people who have it.

The second people in the chain are the immeadiate partners .... who in some ways not only have to see their loved ones go through this, but have to have the strength to remain positive, no only for themselves but also their better halves. .... It can be tough sometimes, when you can have thoughts of just wanting to 'head for the hills'

Close family are next in line, and in some cases delluding themselves over certain things is a way of coping .... very much each to their own I'm afraid .... If it works for you do it.

Responses range from one extreem to the other end of the spectrum, nothing surprises me with peoples response on occasions other than how totally surprised I am.

When things are going right anybody can be the life and sole of the party .... when things go wrong in whatever form, you generally find out the people who can stand up and be counted.

I take on board your comments about should we paint a positive picture about the condition, meaning should we celebrate/trumpet achievments, but in my opinion if we overly highlighted the negative side .... what would we generally achieve .... we may have more visitors to the website because one type of human emotion is making yourself feel better regarding your own problems, if you see and hear of other people in a worse state than you .... bit freak showish I think.

We can follow in the afterburners of other peoples achivments in adversity, inspire each individual to do something positive with themselves, in whatever degree that is.

Would one direction positive/negetive be better than the other .... in the big scheme of things I think probably not... like with any condition the major contributers to the cause will be people who are directly effected by it.

Interesting comments though

#6
Hi, I have just read your comments with great interest. and I agree with you. It is great that people go out and achieve so much in the name of Parkinson's but as you say to the lay man that means that people with PD can do almost anything and that as long a we take our meds on time and every day we have nothing to worry about.

I try my best I do as much as I am able to do, I ride and I am active with my local PD Group (I am on the committee) I do street collections and various other things just to get the name of Parkinsons out there to the general public. You do not see much about PD anywhere.

I try to stay up beat about the condition but it has changed my lfie. I have to sort my day out around my tablets if I am arranging to do anything I cant just go off and do it, I have to consider is that a good time of day for me or not.

I dont think people realise just what life is like with Parkinson's. At the moment I am lucky I am pretty stable, but the time will come when that will all change and I am dreading it.

#7
Hello Juststrummin,

This will be my third time of trying to reply to your post so I hope this one gets through.

Your post is exactly what I feel about life with PD and the total lack of understanding of living with such a complex condition.
My husband and I have been members of PDUK for thirty years and I have been a thorn in some people's side for many of those years simply because of the points you made.

Of course it is very important that money is raised for the society and research, I have no problem with that, but it should be equal to supporting pwp's and their families as this is a lifetime condition that doesn't shorten your life.

As many of you already know the complex issues of living with pd place a huge strain on not just yourselves but spouses and families as well. When we joined there were people in the Welfare dept that were always trying to get Welfare on an equal footing with research.
There was a lady who was simply marvellous, she would go around the country giving talks and workshops on coping with the various issues this complex condition brought to everyone's lives, she was highly respected for her work for pwp's and families, I understand that there are a few of these days still but not enough. There was also a lady who would again go around the country giving talks on stress management and counselling and one who found and produced a book on holiday accommodation suitable for the disabled and families, she also actually organised holidays both in this country and abroad which many people enjoyed especially people who live on their own.
Now although there are Support workers in most area's who do a good job it is completely different.
We all want to hear really positive stories but as people are at different stages of their condition we need to do more to inform and show the true picture of the ongoing lives of pwp's and their families then perhaps families, hospitals and care homes would be better equipped to care for pwp's of all ages and stages.
Life is difficult enough and I know some of you will not agree with these comments but time may well change your view, so lets have more input for day to day life coping with pd.
best wishes
vivian

#8
Thanks again for the comments. Lots of food for thought here.

I believe that if we intend to fight the PD battle head on, we HAVE to be positive. Keeping the spectre of depression at bay is central to this. So the litany of horrors I list in my first post must be kept locked away at the back of minds.

I agree that denial is definitely part of the problem. When we broke the news how many of us I wonder have ended up being the one to provide comfort rather than receive it? Not knowing what to do to help a loved one in ill-health is not easy. Is it in some ways harder to be 'the carer'? We all protect ourselves in different ways. More food for thought there perhaps.

Every now and again though maybe it might be an idea to remind the general non-shakey public (and unsympathetic family members) that PD is not a walk in the park - just to help maintain some balance - but not at the expense of our emotional well-being. It is so true that the only people who truly understand these things are those of us unfortunate to have it. So I suppose we have to try to be patient, and strong, and take up the challenge of exploiting opportunities to try to educate the ignorant, while continuing to celebrate the extraordinary.

#9
Hi Just Strumming

I have now realized who you were referring to in your first message. I saw the one show last week (Mon and Tues) when Alex was on and I thought how fantastic but I also wondered how he was able to achieve that. He must have pushed himself to the absolute limit to do that. He raised a load of money and got PD into the public eye (for two days) but to what cost to himslf I wonder. It would be interesting to know how he is doing now. I hope he is well and not done himself any harm.

#10
The biggest problem with the perception of what it's like to live with Parkinson's is undoubtably the imprecise, unpredictable and variable nature of the illness and it's symptoms. I was diagnosed 7 years ago and I still don't understand it myself, so how can I expect understanding from my family, let alone the general public?

I truly hate the disease and, given the choice, would gladly have settled for a more mainstream illness such as heart disease or cancer instead. At least it would all be over by now, one way or another. One of the worst things about Parkinson's is that it is a life sentence. Diagnosed at 50, there's a possibility that I might live to around, say, 85. That would be 35 years with the disease, over half my adult life! That thought really scares me.

#11
Hello Innominate,

You describe the situation of pd and the reason for the lack of understanding spot on! My husband was diagnosed aged 39 yrs and has now had pd for thirty years which has certainly made a huge difference to the best years of our life. Your concerns of life in the future are very understandable but you really need to try and live life the best way you can now as anything can happen any day of anyone's life, so please don't miss the best of today for worries of tomorrow, if you see what I mean.
I wish you all the best,
vivian

#12
You're right, Vivian, and I try not to look too far ahead but sometimes it almost overwhelms me. I used to suffer from quite bad depression, but although it is still there beneath the surface I generally now have it well controlled, with the help of a moderate amount of medication.

It really is a case of trying to make the most of each day and just writing off the days that are particularly difficult - there is always tomorrow!

#13
:grin:
In the immortal words of Mr Spock ,your thoughts are my thoughts, I have been
dealing with PD for over 14 years , some days I get away with it and try to do as
much as I can other days Iam shut down completely , and it feels like the latter is my task for today its becoming more and mor difcult to typ AAH I wil have too get back to you, appologes
fedexlike

#14

Glad I found this sobering and important subject.

i realise I haven't read everything on the forum, and probably never will, so. I'm jumping in with both feet, and possibly renewing an old subject.

But I recognise so much of this in myself, how should I 'be' when I'm with other people, known or unknown.

Should I put on a happy face?

or tell the awful truth?

I came to a tentative conclusion that neither was right, or wrong.over the years

What I have come to see is that, for me, it's best to be HONEST about how I'm feeling.

one minute I could say how awful I'm feeling and yet quarter of an hour later I can  honestly say I'm feeling great because my meds are working.

Now that means that I can appear to be lying, lazy, useless.....

but actually if I can  just 'be' for a few moments, then perhaps a truer perception could be formed of ourselves, by ourselves, and also the 'message' that is put across to the public?


#15

 

 Hello Juststrumming,

                     Strong words and a frightening description of the average day we may or may not have to endure even Duodopa can sometimes fail me under the merciless battering BLACKHEART can mete out, its like Russian Roulette you just cannot be 100% sure which chamber holds the round yet each day we must spin it and hope

                                                                 Kindest Regards       Fed


#16

I have spent hundreds of dollars trying to find the right shoes for my feet. I have hammer toe and the ball of my foot is large, regular shoes fit well but soon start hurting my feet. Orthofeet’s shoes fit perfect, wore well right out of the box, very little break in. These Shoes are so much more than covering your feet. Primarily therapeutic shoes that are designed to alleviate heel, foot, knee and back pain.


#17

I have plantar fasciitis and these shoes help a lot. I still have some heal pain but it’s not terrible. They are not strange to get used and Orthofeet serve their purpose well. I didn’t have to put in any other arch support insole to help with my plantar fasciitis. I was impressed!!!


#18

I don’t think this thread is actually about feet you know! Also you seem a little obsessed with this brand of shoes as all your posts are about them. I don’t think they’re even widely available in the UK anyway.