Something that I mentioned to another user of this forum has led to this post.
When I am around other people, particularly people who are important to me such as my familiy, I concentrae very hard on NOT displaying signs of PD or even mentioning it.
Clearly this is not always possible - git, other movement, freezing and speech are just some of the areas where PD emerges.
Nevertheless, I find such periods where I am “trying my best to be normal” physically and emotionally exhausting. Why do I do this? Do I need to do this? Does anyone else behave in similar ways with similar effect?
I definitely do this when I am when I’m with my mum or with my children because I don’t want them to worry about me. I do it much less with other people who are less likely to be so concerned. It does put a strain on me and isn’t entirely logical as I’m happy to talk about my PD to my children at least. My mum is 94 though and has her own health concerns so I really don’t want her to spend time worrying about me.
I don’t do it.
But it’s only my son and me so I don’t worry
If I go out I don’t worry either I have turned my attitude round now people can take it or leave it this is who I am now.
Yes I definitely do that, I do it for myself as I want to feel ‘normai’ I am a little ashamed to say I don’t want most people to know I have Parkinson’s, which I know is not supporting the condition.
I don’t want to feel it is getting the better of me, which is probably short sighted,
Standing the the line for security at the airport, I try and be as ‘normal’ as possible.
I decided from the beginning to let my family and friends know about my condition,
The first friend I told, replied that the friend on holidays with him also had PD so he knew a fair bit about it.
Much the same with others I have told. They all seemed to know other sufferers so there weren’t any awkward silences.
My sister has a friend in her breast cancer survival group with PD as well. Discussing my problems with her has helped my sister understand more about what her friend is going through.
While I had the dog at the vet’s getting her annual vaccinations, the vet said “I would normally tell you to hold the dog STILL but in your case, I won’t embarrass you!” The wife of one of the other vets has PD.
My speech therapist wants me to speak loudly when ordering coffee etc. That is something I do find embarrassing.
I do find it easier if those around me accept me for who I am, with PD and if they don’t like it, it’s their problem, not mine.
Thanks Jim, maybe I just find those who don’t want to undestand a little more! I get the bit about speech - my voice volume decreases quite a lot quite often - usually eliciting the response “You’ll have to speak up a bit” but sometimes my daughter has interpreted this as being indicative of feeling “down” or even depressed. Take care
I forgot to say that I don’t hide any symptoms from my husband but only occasionally talk to him about them. I do ask him to come to consultant and PD nurse appointments with me though as that ensures he is fully informed.
Like you, I’m a ‘great pretender’ … and I try especially hard not to succomb to my symptoms when I’m with my wife. She’s a lot younger than me (I’m 76) - and she has a successful ongoing career which is her life’s focus. She’s an extremely capable person, and ever since we got together, it’s been my main aim to support her in every way I can … she ‘rescued’ me (in every sense) when we fell in love not long after my first wife’s death many years ago - which is why it’s been my life’s aim and privilege to be her soulmate and emotional anchor ever since. In the light of all that, I guess it’s not hard to see why my PD diagnosis (last year) hit us both very hard psychologically. I just want to protect her from worrying about my struggles today - and fears for what lies in wait (for us both) tomorrow.
Given all that - by bracing myself to be as ‘normal’ as possible whenever we’re together, I’m finding it’s helping me fight off depression and negative thoughts for hours on end. Yes - it’s tiring … and I’ve no idea how long I can go on doing it … but right now, she’s my main motivation for pushing back on my PD - and in the process she’s helping me to live with it - far more than she can ever know.
I try to be natural, accept the fact that I have got PD but be absolutely open and unashamed about it. The trick is to think about what my predicament means to the other person. The disease is not contagious. What can I do to put them at ease and avoid embarrassing them? If I am fumbling for my change or need to ask a sales assistant to pack my bag for me then a flippant stance may help. E.g. “i’m afraid my Parkinson’s wobble is not being very cooperative this morning, could I ask you please to…?”. This type of jocular approach implies that you are not embarrassed to admit to your condition. This in turn reduces the risk of embarrassment to the other party who, up to now, had no idea what sort of idiot they are confronted by and what is expected of THEM. And people are always eager to help someone in trouble provided they know what they are dealing with and what they have to do to help.
Put yourself in the other person’s shoes and make them feel relaxed about it. This works for me every time. JCPB
Cheers Cled … I think my main ‘message’ is that whille the physical symptoms of PD are inevitable, uncomfortable,and progressive, its power to undermine our morale CAN be ‘pushed back’ by ‘acting well’.
In my case, the main ‘audience’ every day is my wife - and my main motivation lies in my love for her - but I wonder how many PD sufferers would agree with me that in any social situation where we struggle generally to ‘act normal’ - we actually manage for a while to deceive OURSELVES - becoming more positive and outward-looking in the process. Wow! - something to ponder huh? …
Hi @vicdavies. Just read your post and I do agree with your comments, my main audience is also my wife. On the subject of ‘acting normal’, what is normal these days? I’ve said in other posts in the forum that there are people out there who are visually, hearing and physically impaired but they don’t hide it. They act as normally as any other person would. I have Parkinsons, if other people can’t deal with it then tough.
For me is ‘chin up and best foot forward’. Grab the world by the scruff of the neck and say, 'I’m here, I have Parkinsons, don’t get in my way. I have a life to live, and I’m going to live it. MY WAY".
Keep safe and good luck.
Martin
Cheers Martin ------ I’ve just been re-diagnosed (after a DAT Scan) as having ‘Vascular Parkinsonism’ … I’m not sure whether to laugh or cry! Apparently that means I’m not officially a Parkinsons’ patient any more - and I may have to leave this website , oh well … what’s in a name anyway? I’m following your lead and ‘chinning up and putting my best foot forward’ regardless!! …
All the best -
Vic
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