Hello! Can you help me to understand a bit more about how people with Parkinson’s think about their condition? I work as a Campaigns Officer for Parkinson’s UK and I am trying to help disability organisations understand more about what it is like to live with a progressive condition like Parkinson’s.
Knowing that everyone is different, I am trying to hear from as many people as possible to try and get a wide range of views!
I think that the language that we use to describe ourselves is an interesting starting point. Do you tend to describe Parkinson’s as “an illness”, “a condition”, “a disability”? Do you describe yourself as “having Parkinson’s” or “being disabled” or something else?
Does it matter who you are speaking to, or what situation you are in? And are there any terms that you would never use?
Hi Tanith, I have parkinsons , but I do not use it as a disability , I tell people that I have" Parky ".
As everyone is different it is a difficult thing to describe , I certainly don't feel ill but have a challenge every day, my walking is slow & my balance is not too good , we have a saying in our house P A M positive attitude of mind without it I would be lost. I try walking daily some days a mile some 2 some a few hundred yards. to coclude I think of myself as the same person with a condition not a desease good luck & hope this helps . Marie
i tell people I have Paarkinson's but i don't consider myself at all disabled but I have only had it for 2 years and have very minor symptoms so far.
Yes I have Parkinson's this is usually enough for people to understand why I walk so slow, But I have had a couple of incidents on the bus's as I use a Sholley Trolley to walk and shop with, This means I sit on the disabled seat at the front, as I am not retired people assume that I am OK. and demand not ask me to move this is the only time I am Disabled as I tell them and I am not going to move but I wont tell them what is wrong with me. This happened this week again. But in the main people are helpful and kind when they realize iv got Parky.
Hi, As you will find, it is called the designer decease, because every PD sufferer is different, and all have maybe some similar symptoms, and also great difference in symptoms. My husband is the Parky, he has gone from a fit, and healthy man, with great confidence, to a quivering nervous wreck, who is frightened of everything, lost all confidence, has given up on his appearance, and on life, he has lost interest in everything possible. He has been in constant pain, going without sleep, stumbleling, shaking, dribbling, can't cut up his food, can't dress himself, falls asleep all day long, can't do anything that requires strength or concentration, can't do the simple tasks we all take for granted, like tying shoe laces, making a cup of tea, opening a carton or packet, can't get comfortable at all, can't turn over in bed, and now falls out of bed. These things are just the tip of the iceberg, I could name lots more. On a positive note he is actually coming to the surface and although very slowly with heaps of persuasion, he seems to be gaining some confidence back, there looks like there is a light at the end of the tunnel? just a matter of trying to keep him on track and keep following that light. I would say that PD is being very unwell, and very disabled, but every single parky is so different yet very alike in a lot of ways, it is a very complex illness, and I am a newbie and learning more by the day. love holsx
I prefer the term "condition". You recover from an "illness". I don't much care for "disability" as Parkinson's is neurological rather than physical and most sufferers are not consigned to a wheelchair. I just say "I have Parkinson's". If people want to pigeonhole me, that's up to them.
Parky is the enemy within, Blackheart, I use every facility at my disposal to
defeat or at least drive this wicked entity from my Brain, BLACKHEART invariably
will prevail but not without a battle of attrition, if it takes me down BLACKY goes with me, I am ill but not Disabled , I have intolerable pain, but I wont
back down ,I am ill but I have a powerful weapon at my side Duodopa this enemy of my enemy is my friend and will stop parky in its tracks, its not perfect but it will have to do until someone brings the holy grail of PD , A CURE
Kindest Regards fedex
If you compare yourself to other people you will probably think you are disabled. But disability is a relative term; sadly there are more disabling diseases than Parkinson's. If you compare yourself to those people you will probably think you are less disabled.
If you compare yourself to your younger, pre-symptom self you are probably very likely to see yourself as disabled.
However, if you look in a mirror and compare yourself now to how you are now YOU ARE JUST BEING YOURSELF - remember Parkinson's is a part of you but not the whole of you and no one is to blame for it.
So, my answer to the question would be - I'm just being myself.
See also my blog post: http://dialoguewithdisability.blogspot.co.uk/2013/01/am-i-disabled-now.html
For us, "having Parkinsons" was a "condition", both words describe it as we saw it way back.
However, after 15 years, diagnosed at 47, Parkinsons IS becoming more of a disablity, rather than a condition.
hi Taneth, yes it probably does matter who you are talking to I know when iam talking to work (management / HR) I usually address it as a condition as I feel if I were to say that it was my disability they would probably look at me in a different light..... but then again everyone probably feels different. I wish you well my friend with your research.
I reckon it all depends on how long you have had IT / Parky / Blackheart. After 30 years (say), I may well decide to describe myself as ‘disabled’ - who knows?
I was diagnosed over three years ago but was certain I had it five years ago. To me, this is a condition, not an illness, and only my immediate family knows about it. I told them a month ago when I crashed my car. I play it down, saying: “I'm fine; I'm lucky because I respond well to the medication (ahem); there are worse things; you didn't guess anything until I told you; there's an enormous amount of research going on etc, etc.”
I have taken part in 6 shows since my diagnosis, and the last one involved me wearing a long garment and walking up 20 stairs in regal manner in front of an audience of 500 whilst fanning the King with peacock feathers! (Oops, why does that sound pornographic?) It was slightly scary at the top, with a sheer drop visible through the floorboards, but I had to appear the same as everyone else. I certainly didn't want them making allowances for me.
I'm currently preparing for my seventh show and have no expectations of failure. And, most importantly, none of the 50 to 100 other people involved have guessed there's anything wrong with me so why would I want to describe myself as 'disabled'?
It doesn't matter who I'm speaking to or what situation I'm in, if others choose to regard me as 'normal', then I'm 'normal. Just don't pity me – ever!
Hi, there. I thought I'd have a go at a view on this. I've had pd about 5 yrs now and I consider it to be a condition and that it is disbling in various ways and to different degrees. Some people have a lot of pain and some have none or very little. I myself find walking difficult with a jerky gait but often with dystonia in the feet causing them to turn on their outsides, forcing me to stop walking until they "normalise" a bit. I also have days when I am in a mental fog and not able to concentrate properly. Also, eyes watering etc. My vision has been affected to the extent that I had to give up driving because I was seeing double due to the effect of pd on wearers of multifocus lenses. Overall, I count myself lucky - there are many people worse off than I am.
First of all I just want to say how delighted I am to hear that somebody working in the field of Parkinson's is taking some time to find out about it. I know it isn't always the case and I hope that you are able to get what you need from this written form but I suspect you might do even better if you got out somewhere and spoke to a few people.
To answer your specific questions directly, I tell people that I have Parkinson's; and if we are to myself and my friends as people with Parkinson's And I talk about the people who live with Parkinson's.
I had been diagnosed for over 18 years, since the age of 39. I can describe herself as having an illness, in as much as there are many days when I feel significantly below par. I also know that in recent years had begun to describe myself as disabled as I cannot walk without using sticks and there are a number of other things which I manage better with the use of some sort of aid.
You know I'm sure, that Parkinson's goes well beyond a movement disorder, Known now to affect many other parts of the body and recognised as a significant contributor to depression and cognitive limitations. If you can get hold of a copy of Chapter and Illuminating Verse, (Amazon)You will find a series of poems which many readers with Parkinson's have said provides a very accurate account of how they feel having Parkinson's.
Good luck with your learning.
sorry about the errors in my post above. I use voice dictation and didn't edit it sufficiently carefully.
I had meant to say that although I refer to myself as being ill, I do not call Parkinsons an illness or disease. It is a condition.
Apologies again for the errors above.
Wow! Thanks so much for your responses so far, everyone. This is my first foray onto the Forum, thank you for being so welcoming – and so forthcoming.
It seems that many people see being “disabled” as something that may not happen until Parkinson’s becomes more advanced, or symptoms become harder to control. And up until then, it seems like many of you would not choose to describe yourself this way.
I wonder what happens when you see things about disabled people, eg on the news. Do you pay more attention to them than you did before you were diagnosed with Parkinson’s? Or do you tend to assume that they are about people with different experiences and issues to you?
(Thanks also for your important comments about talking to folk, Radar! I agree it is the best way to find out about living with Parkinson's! I’ve been with Parkinson’s UK for nearly 6 years now, and really couldn’t have done my job without getting out and about and speaking to people face-to-face! It is the only way that someone who hasn't experienced Parkinson's can even begin to have insight into how it can affect people.)
Only too happy to help.
Although I always describe myself as having a 'condition', this invariably leads to further enquiries - and at that point I tell people I have Parkinson's. I was diagnosed over two years ago - on my 55th birthday - although I had displayed symptoms for at least another two years before. Every doctor I saw insisted that my problems were entirely the result of anxiety. Then my husband took a job in Romania. Within a week, a GP referred me to a psychiatrist...who referred me to a neurologist...who immediately sent me for an MRI scan. Bingo!!
Now to answer the second part of your question - how I think of myself. I have heard people with PD refer to experiencing four seasons in one day, and that is precisely how I would describe myself. I can be carrying heavy bags of shopping from car to kitchen, feeling almost normal. So I put the kettle on and, in the few minutes it takes to make a cuppa, I am reduced to a crippled wreck, doubled up with back pain and completely unable to carry the mugs into the living room. So, although I despise myself for it, there a plenty of times during a single day when I consider myself to be unwell and/or disabled. But then the medication kicks in,I start dancing around to my favourite music...and the world seems a better place again. For a while.
Do hope this is of some help.
All the best!
Such clarity of thought, Dr Jonny. I think that’s probably what I was trying to say in my muddled, angry way. (Anger against the condition, that is.) I’m certainly impaired, and I struggle every day to disguise that impairment, but I’m not disabled. One of the things that helps me, personally, to disguise my impairment is keeping my condition secret so that I don’t get scrutinised. Other people will have their own ways of dealing with the condition, and disguising it might not be so important to them.
So, Tanith, I think it’s also important to understand that we’re all different and we all have our own ways of dealing with things, however flawed and futile our methods may be.
Hi , I consider myself to havea disability.
I also consider myself to be disabled due to a chronic illness.