i turned 50 last november.
and i've had pd for five years and my friends are turning 50 as well,
and i am getting invited to party's.
i was looking forward to one last weekend but soon as
i arrived i wanted to go home, my speech went, i had to repeat myself
when talking to people and i felt so ignorant because i was'nt listening
to what they were saying,
i just went home after half an hour.
can someone tell me they feel the same?
is it parkinsons?
medication wearing off?
or do i just have to live with it?
I think that I understand how you feel. I have never been a "party animal", but since pd I have actively avoided social situations. I was dx over 3 years ago, but had been showing symptoms for seveal years before this.
I can only say that in my expereience, it is part & parcel of the pd condition rather than meds wearing off. In fact, I spoke to my consultant about this. She agreed that pd can, if you let it, be a very isolating condition. She advised that I do try to socialise, but recommended that I "warn" people that I may need to leave rather suddenly and have some sort of plan in place for a "get-away" which will cause the least concern to others and embarressment to myself. . Whether or not I say that this is because I have pd is of course up to me. It is quite acceptable to say that "I am feeling a little under the weather".
I do find that I am more comfortable with people visiting me. I do not know why this is - perhaps loss of confidence that seems to be an element of the pd syndrome.? Also , in my own home I feel more able to do my usual constant sit down/stand up/ shuffle about routine that people may find distacting!
But I can assure you that you are not alone in feeling like this. I was invited to a wedding (tomorrow). I wanted to go, but know that I will not. I would literally be sick. Luckily my friend understands.
Personally, I think that you did very well to go to a party at all, let alone for 1/2 an hour
I have very much the same kind of experience but with me it is not yet the parkies causing it, it is because I won't face up to needing a hearing aid. I am 66 diagnosed 2 years ago and against the background 'hum' of a party I cannot pick out what people are saying to me. Not sure if parkies is causing the head in the sand attitude. I am also happier if people come to me.
My advice, for what its worth, is not to let any difficulty stop you from doing whatever you want to do. I went to a celebration of 25 years of marriage on Sunday and had a good time. This is in spite of not being able to speak and risking falling over every time I try to stand up. Admittedly I knew about half the people there and the hostess did rearrange the group photograph around the chair I was occupying, but I did not feel embarrassed.
Excellent advice Weedy and good for you attending the celebration your friends obviously wanted you to join them
What a very considerate hostess to arrange the seating for the photo shot around your seat.
I hope you don't mind me commenting on this problem, but as a disabled wheelchair user myself and a carer for my husband for many years we have had to overcome most of the problems you mention. I felt very awkward when I first used my wheelchair in fact we went forty miles away so I wouldn't see anyone I knew and on the second trip we travelled 12miles away hoping I wouldn't meet anyone again but we bumped straight into a friend who was sitting down in the park, once we got closer and started chatting I realised she was crippled up with arthritis and we were both only in our late twenties at the time, since then I have had an electric wheelchair and go everywhere, well I have to as m/y has had pd for thirty years now, I drive an automatic car and have a hoist to get my wheelchair in the back, I realise with pd it is different as a lot of pwp's I know feel as you do. When we started a branch most people found it so much easier to mix and have a social life and we organised trips out and meals out as people felt more comfortable amongst people who understood, we have some very happy memories of these trips and a few holidays, sadly my husband is now in a nursing home which is 40 miles away from me. I have to keep the driving up and if I have to I will get hand controls. Don't think I don't get frustrated and sometimes upset of course I do, I have trouble getting petrol sometimes as they have to serve me and I have been sent away with a "TOO Busy Today" comment so I am now looking for another garage to assist me.
You all have so much courage so try not to shut yourselves away enjoy what you can and don't worry if sometimes you really can't face it, you may well do the next day.
I have every sympathy for you.
My husband and I have been invited to his sons wedding in September and I am dreading it. It is about 200 miles away so I will be stuck there for the duration, besides he is my husbands eldest child so I HAVE to grit my teeth and get on with it, what else can I do?
My husbands ex wife and family will be there too which is increasing my levels of anxiety, besides which, apart from my husband and our youngest son, i will know no-one.
I am only invited under sufferance anyway as his children see me as the wicked stepmother despite all my attempts to be kind and welcoming to them (for over 21 years)
I don't want them pitying me (or worse, pitying John for being stuck with me) as I turn up shaking and twitching.
What can I do, I can't let my husband down but i don't want to go.
Dear Caroline 211,
I understand fully how you feel even though it is my husband who has pd,as you may know I also use a wheelchair and they are always in the way at these occasions,I have to check which isle people will be coming up and are there any steps in the church etc.I know I don't have the anxiety the same way as pwp's have but it is not easy especially since my husband has to use a wheelchair as well now, he usually holds on to mine and I pull him along if we haven't had anyone else to help us, I try to look our best and make a joke about the difficulties smile a lot, it seems to get us through.
Could you talk to your husband and son about how you feel and then put in some strategy, perhaps get to the church early so that you are already sitting in place and the same at the reception. I wonder if you could talk to your pd nurse and she may have a suggestion, try not to let it spoil you day, look glam and feel secure that you husband and son love you, so blow the rest.I hope you have a lovely day and if you do then that is another mountain you have climbed
I can relate to your situation. As for your husband he wants you there by his side. So for you to avoid any stress that day is going to be impossible. One thing is for sure eyes will be on the bride and groom and even if you feel people are looking at you they wont be.
We DO worry about what people think , why I really don't know .
On that day
You will have by your side a loving husband and your beautiful children so *** what they think.
A stiff drink may help relax...not very good advice but thats what I would do.
Good luck love PB x
im off out to day with my carer for my hour social surport,and again on friday for 3 hours,i have found goin out with joan me carer i enjoy meself,but iam still very wary of people and things around me,no way could i venture out by myself no more,im glad i have the care ageny and also my beci for there surport