People just do not understand

I live alone with Parkinsons, i have had it for 12 years and my mother had it before me.
Friends just do not understand the condition. I have spent all morning trying to explain to a friend what parkinsons is and explain that my biggest problem is fatigue, sheer total mental and physical exhaustion. I have learned to manage the condition, i exercise , i keep busy but my energy is limited.

I have no family nearby , my 93 year old father lives at the opposite end of the country , and my son - a GP - i see as often as he can manage it. I’m ok with all this , just having a rant . Just when you think you have got through to someone they say the most thoughtless things
Anyone else experiencing this?
So, after explaining all this to a friend she said why not go on holiday, its only three trains to the airport … NO, i can’t do that any more.
With each stage of this condition there are new delights to learn how to deal with. The problem is that i present myself in public very well, -but only on days when i feel well. Nobody ever sees me at my worst


my partner is sometimes unsympathetic. the problem is that i look like i can do things. much/most of the challenges we face are internal obstacles that are invisible to others.

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That is exactly it. People say i look fab, they comment that i exercise etc, what they don’t see are the days in between when i am fit for nothing. I do something one day and pay for it the next. Hey Ho.
Stay positive :blush:

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Hi Starlet, I am waiting for a diagnosis for PD but have previously been diagnosed with ME/CFS (25 years ago). I also suffer a lot with fatigue and it is difficult to get people to understand the difference between fatigue and either tiredness or ‘just feeling a bit off’. I read an article by an American lady who had fibromyalgia. She was out with friends one day at a coffee shop and one of her friends asked if she could explain fatigue. The lady gathered 12 spoons from the table she was sitting at and a few others until she had all 12 spoons. She laid them out in a line on the table and said to the friend, who had asked her to explain fatigue, to describe, in detail, what she usually did once she had woken up in the morning. The friend began by saying, ‘I get out of bed’. At which the lady with fibromyalgia took one of the spoons away and said, if that was me, it would take 1 unit (spoon) of energy to get out of bed. The friend then went on to describe her morning routine. By the time the friend had got to putting the kettle on for a cup of tea for breakfast, there were no spoons left. The lady with the fibromyalgia had taken a spoon, or in some cases, two or three spoons, every time her friend used done an activity that required using energy. When there were no spoons left on the table, the lady said to her friends, the 12 spoons represented her energy level for the whole day and that she had to be very careful about how she used her energy otherwise she would run out of energy before her day had finished. She said she could borrow a couple of spoons from tomorrow’s 12, but that only left her 10 spoons for the next day when she wouldn’t be able function properly. I have used this a couple of times with family members and friends and it appears to work as both groups have a shown a better understanding when I say, ‘I can’t , I’m too fatigued’.

Thank you for responding. Yes i know that analogy and have used it on occasion
Its not just about fatigue though is it, parkinsons is very complex and difficult for others to understand

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I love the spoon theory

Be careful of theories, they can enforce a belief which may or may not help .
So You have not been diagnosed yet?
Please try and be positive , and get lots of exercise outdoors to increase your serotonin, even if you do not feel like it at the time a walk in the sun can only do you good. Also, have you tried CBT?
I was just commenting on how i look so well that some friends can’t believe i have had P D for many years.
I am very happy , i keep fit and healthy , and i stay positive
Good luck

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Hi Starlet, im a new member, the most trouble i experience is fatigue, i struggle every morning to get up for work and being positive for me is so difficult as i used to be very active at the gym twice a week, does exercise really help that much? Im on 350mg a day of Madopar, i have depression and anxiety problems also, just think its overwhelming me .

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Most definitely, it is essential. Have a look on YouTube for Parkinson’s warrior exercises uk and ask your parkinsons nurse about exercise.
I have dance lessons , exercise at home and walk as much as possible. It is necessary to keep the brain active too and to also practise some sort of mindfulness .
It may seem counter productive to exercise when you feel worn out but you do need to push yourself. It benefits your mental health and You will sleep better too.
All the resesrch points in the way of exercise ,do google it. I can honestly say that EXERCISE WORKS ( but do something you enjoy) good luck, let me know

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Glad you and the whole Parky community can be fully seen here - the ups and downs, the struggles, the wins.

In my experience being fully seen is so important for my mental health.

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We all have bad days don’t we, and its not surprising! Nobody would ever jump for joy at a Parkinson’s diagnosis . it takes so much from us. Ruined my retirement too - i am too exhausted to appreciate it.let alone enjoy it.
Best wishes to you

Hello starlet
I have been pondering your post people just don’t understand since reading it. I doubt anyone who has Parkinson’s would disagree with that and there is much talk of raising awareness and educating the general public. However I think it is probably much more complex than may appear.
The fact is until some life changing event be it a stroke or Parkinson’s or whatever, comes knocking at your door or you happen to have personal involvement with it, very few give these sorts of things much thought. They may be interested in an item on the news or support someone doing a fundraiser etc but it otherwise doesn’t impinge much on their conscious thinking. Nor should it, we couldn’t live/function if we didn’t filter out quite a lot of things that go on around us. If something does happen to make us aware, what we know about it tends to be that which we come into contact with depending on their involvement. The work of many health professionals can look like an entirely different job depending on the setting where you see them work.
Over and above that general obstacle that I think will probably always be there, I can’t imagine a time when this would not apply, I think there is a particular problem in getting people to understand Parkinson’s - and I would say here that the spoon analogy is an excellent attempt - is not only the changing nature of it or the fact it is very individual in its impact, but also we can only use regular words that anyone can use - fatigue, mobility problems, pain and can only use regular words to describe it. The reality is others may have experienced pain or fatigue - and who are we to say different but equally can we understand their experience any more than they understand ours. Why should ours be any worse than theirs? Others will just try to be supportive by saying they too get tired or whatever when they clearly have no idea of the reality but again why should they - did you really have any idea until it happened to you?. I know there’s lots of things about Parkinson’s that experience has taught me which prior to diagnosis I might well have responded in a cliched way in an attempt to be supportive.
Then there’s us, people with Parkinson’s. We don’t all easily cope with the diagnosis so may hide it, avoid talking about it or underplay its impact for example. People we come into contact with won’t learn anything unless we let them in. Equally though I know I don’t want to ‘talk Parkinson’s’ or have it centre stage in my life any more than I have to, so I’m probably guilty of saying as little as I can get away with to move on to more important everyday things - there’s not much opportunity for raising awareness there lol.
I am not suggesting for one minute that we shouldn’t keep trying to educate and inform and raise awareness generally and, in my opinion particularly in general hospitals and other health settings where lack of understanding can make life much more difficult than it need be. Maybe we shouldn’t expect others to have any more understanding of Parkinson’s than we might have had pre-diagnosis nor be so exasperated when they ‘just don’t get it’ when you got a response like you did starlet, after taking time to explain. Maybe all we can do is keep plugging away and every now and again score a small victory when there is sometimes a person who does ‘get it.’
I appreciate that what I have written could be seen as something of a theoretical argument, and up to a point would be a view I can agree with. Nevertheless, in writing this post I think I have raised some valid points about the complexity we face in getting Parkinson’s understood. Finally, I don’t believe that Parkinson’s is alone in being poorly understood. I think there are many conditions that have the same problem and whilst we can perhaps be more empathetic than others to this because of our own experience we have to accept there may be elements of their condition that we ‘don’t get’ too since they are different to what Parkinson’s may bring.
Theoretical it may be, but it makes for an interesting debate all the same.

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Goodness me, this is so very accurate, it would take me ages to respond fully right now, so i am going to keep it and read it again
This needs sharing with more people
On Wednesdays i have a dance class which i love , i never talk about my condition and most dont even know. Thursdays i pay for it, i could do absolutely nothing yesterday.
Most people would say to push through the tiredness, but its a different sort of tiredness where it is impossible and fruitless to even attempt to fight it. I hardly had the energy to get out of a chair. I pottered around my apartment and did some stretches but thats all. Nobody ever sees me on bad days so they do not know what it is really like.
I will keep reading your marvelous response, please get it published , you are a wonderful advocate
Thenk you so much

High praise indeed starlet, thank you. I am happy wiith it just being posted here and others can share it as they wish. It is only how it seems to me, not backed by any supporting evidence for example and personal opinions (which is what this is) don’t carry much weight in the published world. Sometimes I think I just have a strange way of looking at life that is a bit out of step with the majority but then people don’t have to agree with what I write and it may perhaps make them think a little differently.

Your opinion is wise, and well thought out.
I do think Parkinson’s magazine should see it. But its your decision. Today i feel ok ish, so i am going out for a while. Yippee…small pleasures
Have a great day and thank you

I will think about it. Hope your day was kind to you.

Hello starlet, just to let you know I have submitted it as you suggested. To be honest I’m not sure it ‘fits’ with the magazine but it might be interesting to get their view. I will let you know when I hear back from them

Thats very brave of you , and i am glad you did it.
I sometimes go and talk to student doctors about the condition

Hi Starlet,
I was diagnosed with Parkinsons 7 yrs ago, how totally i understand how you feel, I also live alone and have good and bad days, and I used to travel but not now, I used to walk miles but not anymore. If i go out for a short walk, that is me totally exhausted for the rest of the day, i am unable to do anything else. I try also to explain to people about my Parkinsons, they try to understand and are kind, but in my opinion unless you are living with this, or caring for someone with Parkisons they dont. I also experience people saying you look so well, and as you had said people dont see you when you are at your worst. Music helps me with my illness it gives me a postive lift and is good for my wellbeing.

Hi, I think because there are so many symptoms people without Parkinson’s fail to understand this, as they say you will rarely find two Parkies the same. I visited House’s of Parliament couple of weeks ago with some fellow Parkies and Caroline CEO of PUK, the key is raising awareness and explain that there’s not one face of Parkinson’s.

I have convinced handful of councils to light up in blue on World Parkinson’s Day 11th April.

I am looking to start a zoom chat with a group in Canada and some others around the world, happy for you to join.