My Parky adventure is slightly different from normal, what is normal ?
My tremors aren’t too bad but right side is getting worse.
My biggest problem is mobility.
I find it hard to stand or walk I’m fine when I’m sitting down so I’m happy I can still drive.
Mentally it’s difficult,I used to be able to converse with anyone, alas now I must think twice before the wrong words come out, this can lead to me being isolated,lots of folk avoid me now and I find it very upsetting, but I’m glad to be here.
A good friend is an inspiration to me, he had a bad cycling accident 25 years ago and is in a wheelchair,what I’m going through is nothing compared him
Anyway the tremors I get while standing, it feels like my whole body shakes, it happened during a really hot afternoon,in Glasgow, 
, I fainted and my wife thought I’d had a stroke, I was out cold for seconds only, came to disoriented, but got checked out and I was fine, the whole body shake is terrifying so any time I’m out I use my fold up electric chair.
I would like to hea from anyone who has similar problems to me
Thanks xxx
Hi gry
Just read with great interest your post, My tremors seem to have stopped! quite a while ago. Its the other thing that PD throws at you. When I get up in a morning (thats only when I have slept through the night) I feel quite a normal me, but after being up 1hour /2/3/4 hours then my PD tries to take over, Just like you my problem is mobility I feel as though I am trying to walk on a ship which is in a 9 force gale. I had to see my PD doctor at the hospital the other day and told her about my ship ride, well it just went over the top of her head, all I got was, Well!!! you do look well, yes maybe I do, but I don’t feel it. I also now have a right foot that wants to drag its toes but it also want to trip me up (I had a disagreement with a concrete slab the other year and guess who won) Now Conversation I find like you my words come out all wrong some times they are the right words but not in the order they should be in., it is worse when I am with family, I feel though I am just talking a load of nonsance, I find it hard to consentrare on any program that I would like to watch on TV, I used to like reading but now can not get past the first page, swimming I just can not remember how to swim, Line dancing/ lawn green bowls now given up I lose my balance.
Fainting a good while ago hubby and I were on holiday we caught a train and next thing i woke up wet though, everywhere, my hubby thought that I had gone to PD doc’s in the sky. Went for a brain scan and never did get the result, probably did not find anything just an empty head. Like you, I know that I have Parkinson’s but it makes you wonder what next it will throw at us. Each time I see the PD nurse /PD Doc or GP and tell them what my problem is I get hummm’ well it could be your Parkinson’s but it might be some thing else So I think it is easyier to post on our site as at least we are not on our own there is always some one out there wiith similer symptoms.
You are not alone.
Hello jcy and Mary1947
I read both these posts with interest. I am not posting to particularly comment on what you have both written but rather because it made me think about Parkinson’s and how we each adapt to it more widely. I did wonder whether I should post this or not because it is actually just my own thoughts about my own Parkinson’s and therefore not only unlikely to be of interest to others but probably quite hard for others to understand because it is quite abstract. In the end I decided I would post on the basis it may set someone thinking a bit differently about their own Parkinson’s.
Over the years I have been living with the ever present Parkinson’s I have come to the conclusion that there is a subtle but nonetheless important difference between professionals and others who ‘know’ about Parkinson’s and those of us who have it or are otherwise more directly affected by it by dint of being family, friend or in some other capacity
No chronic condition, and certainly no neurological condition would be easy to live with but Parkinson’s and those conditions related to Parkinson’s does seem to have unique issues. One of the most difficult is that it can affect just about anything motor and non motor but even where the symptoms are the same their impact on the individual can be quite different; throw into that that it is variable and can change day to day and even hour to hour it is not hard to recognise this is a complex condition. Professionals etc involved in management of our care would of course know this and the advice or recommendations etc they give based on sound reasoning (for the most part, I know some have shall we say mixed feelings about what they are told) but the real impact it has cannot be easily replicated in an education sense and it is something that is very difficult both to explain to someone not affected and to be truly understood by those with no first hand experience.
There is another aspect to this that I often think is overlooked and that is little heed is paid by professionals etc to the individual and their ‘personality traits’ for want of a better word. I believe when push comes to shove, you can only do what feels right to you, that you manage your Parkinson’s as best you can depending on the curved balls it throws at you and how you react to them. People post on the forum, particularly in the early days wanting understandably, to be given definitive answers, but I think there are very few if any, concrete things you can say about Parkinson’s when everybody’s story is different. The strength to live with Parkinson’s for me very much comes from within. It enables me to take on board what is happening with my symptoms and consider advice and recommendations given. Crucially though, it gives me the confidence to do what is right for me because this is happening to me - not my consultant, specialist nurse or GP. Not even others on the forum. It is happening to me and the unique way I and everybody else approaches their own Parkinson’s is the really important thing.
Taking this approach has many benefits for me. Amongst other things it makes me feel I have not handed all control over to Parkinson’s and that I can (and do) challenge my changing symptoms and circumstances. It means that I can still be actively involved in the decision making around my treatment and have a voice that can say ‘thank you but that’s not for me.’ Most important of all though it means I will know I’ve done the best I can to live well with Parkinson’s by my own efforts and that whatever my future holds good or bad, I couldn’t have done anymore. That it’s the way it is because I did it my way (to borrow the song title.)
I don’t know if any of this will make any kind of sense to you but I want to thank you both for posting since it has helped me see how I manage my own Parkison’s in a totally new way ie I live my life with Parkinson’s in exactly the same way as I lived my life before Parkinson’s namely take whatever life throws at you and do the best you can to make that experience have some meaning and value to you as a person. If I can continue to be true to myself, I will be doing just fine.
And if you made it to the end and haven’t ended up thinking ‘what on earth is Tot on about’ I can only say well done - your way of thinking obviously at times follows the same obscure paths as mine.
Tot
Morning Tot
wow !!! I agree with all said
Please keep posting as you say it’s up to your self how you manage PD. My mobility is getting worse but I have talked hubby into a small holiday in Wales. Hopefully we will manage to get there, he is getting on in years but it is only 2/3 drive to where we are going but as we both drive it should not be to bad. If we feel as though we can’t make it we will just return home. Good luck in the future and as I have said please do keep posting. Stay safe
My biggest problem is that it’s so much hassle to go anywhere in becoming reclusive, need to make sure disabled parking is close by,can I take my wheelchair
eg Next years open is at Troon, we have a caravan 5 miles away, ,so I’ve contacted them about disabled parking, it’ll be interesting if I get an answer.
The number of times I’ve contacted football clubs to no avail
Still I keep trying:sunglasses:
I do hope your holiday works out mary1947 but even if you do return home you at least gave it a try - and if you have to stop a bit more frequently than you hoped does it really matter if it takes you a bit longer to reach your destination. The journey is part of the holiday enjoy it - I am of course assuming you won’t get caught up in some horrendous traffic jam lol
Tot
You’re quite right gcy, it is recognised that many with Parkinson’s find they live in an increasingly shrinking world and that is largely because as you say you have to plan so much more , it’s not easy to be spontaneous that’s for sure. You are also right that we too often have to fight for all sorts. Taken together it’s easier not to bother - and I must admit I do on occasion give in to that and there’s nothing wrong with that so long as it doesn’t become the norm, it’s very easy to give yourself reasons not to go somewhere or do something but in reality they are excuses. The key thing is that you recognise what is happening and you are making efforts to keep living the life you want in spite of all the brickbats thrown in your path. The cumulative effect of little victories do add up. Good luck to you, I hope you make it to Troon next year - that’s a powerful motivator and would be a wonderful achievement. It may be hard going but you’re not down and out yet. I look forward to hearing all about it in due course.
Tot
Many thanks ,Tot for holiday wishers.
Watch this Space? will post all the details about the holiday.
Catch up North Wales holiday we did have a good time, no falls no slipping in the shower and more which I shall not bore you with, Had a go at archery seeing as I am a Nottingham girl (Robin Hood) just for those folk who don’t know well managed to pull the string back arrow left the bow but missed target not once but 3 times. When we arrived home we decided to book for Potters they do seem to cater more for our mobility than Warners so watch this space.
I was delighted to read your post mary1947 and even better that you are already thinking about your next holiday. Parkie’s not got you beat yet lol
Tot
Hi Tot sorry that I am late getting back to you, due to now having more mobility issues I am finding it hard to come to terms with my PD. I think that I am now going into the next stage, of PD. I do get lots of support from my family, but they are all working and they have their own lives to live. My hubby is great he is always there when I need him but this year he is 81 five years older than myself. So what will happen in the next few years !!! I have just joined this PD exercise group they don’t take it too seriously We do exercise /chat / sing silly songs but we all have a good time. If any member lives near Eastwood then the group is run by Nigel in the hall back of the Church on Church st.
Well just letting you all know that we went to Hop-ton-Sea Norfolk will tell later how the holiday went. We are now at the stage and have sold the car, finding it hard to concentrate with having Parki!! and hubby went for an eye test and the result was not good, So our proud procession had to go. We thought holidays just been to Warner’s and did not rate it. So having been to Potters before we booked for 4 nights, Booked train tickets (Brought a disable rail card) well worth it, One big problem we could not reserve a seat, but it was not a problem. I can not praise Potters enough, staff 110 % for there customer service they go that extra mile for you, booking in and booking out easy peasy, asked for a bungalow with walking shower due to having Parki, hired a motor scooter mobility not a problem,There is something going off all day right till late supper at aprox 12 15. I would recommend this place but if you go just tell them beforehand that you have Parkinson’sons. In the evening the theatre company performed on stage, They are really good It’s like seeing a first class London show.If you have not/never been to Potters then give it a go!!! YES it’s not cheap but what you get in the package is unbelievable plus it’s AI.
Hi mary1947, I would say that it might seem that they don’t take the exercise sessions too seriously but don’t dismiss it. As long as you do the exercises to the best of your ability, they will help. Chatting is a huge benefit - Prof Chaudury (I think) recently said that social interaction is perhaps second only to medication in helping us, and voice therapy is another biggie. Everything there will help. Neil
Hello mary1947
Just wondered how you were gettting on because in your September post you felt your Parkinson’s had moved on a bit. Hope you are not finding things too hard and not becoming too concerned about the future. Are you still going to the exercise group? Perhaps when you get a mo, and I appreciate this is a busy time of year, you could drop a quick line letting me know how things are.
Tot
Hi Tot still very stiff but the spinal doctor from QMC hospital phoned and did a consultation over the phone. ps had spinal surgery in Feb 2023 the only fault is if I say anything or ask any thing it goes like this, PD Nurse this is what i have “Is it PD” nurse well it could be. QMC doc this is what i have? "Is it to do with my spinal opp? Well it could be, Now I know its hard to say if it is PD or not but a better answer. would be nice. I have not been to my exercise group for a couple of weeks its closed now till Jan 2024 but i will be going back. I do worry about the future, as we are in a bungalow which is at the top of a very big hill. At the moment my husband is my carer but he has heart condition and is 4 years older than me. We do not own the property as when I found that I had PD we sold our house and went on some good holidays. The property belongs to a HA it is a nice place but we have tried to move but because we have a bungalow the council don’t want to know. When we moved in we did not take any notice of the hill , as we were both very mobile. So sorry to bore you but what i want to know is were do we./I go from here? Oh Tot Merry Christmas xx
Hello mary1947
I too live at the top of a hill with steps up to my flat. I think if I can’t manage the hill on my own that would be the time to move as I would run the risk of becoming quite isolated. There is always something with Parkinson’s, it seems to me, that tests you in a way that you wouldn’t be tested if you didn’t have this or indeed a similar condition. When you are well you carry on living without giving a great deal of thought to the future and if something happens like a stroke or heart attack, generally speaking most people can work round any issues that may arise therefrom. With Parkinson’s it’s different because you know it will catch up with you at some poiint even if you don’t know exactly how and that forces you to plan ahead a bit with approriate housing being a key and very important issue.
My feeling with your particular circumstances is that you will probably have to dig your heels in and fight for a move to a flatter area. The bungalow may well be appropriate for your needs but long term where it is located is not. If you and your husband cannot manage the hill you will probably be in the same position as I am and run the risk of becoming isolated - not at all good for one’s mental health. I also think you would become more dependent and are likely to need increased services because you can’t get out to do them yourself - this could potentially cost the council more than moving you to somewhere you could manage and maintain greater independence for possibly a substantial period of time. Any support you could get from your GP, Parkinson’s Nurse, social services etc would help your cause.
I am not sure you are at that point yet, but you can start thinking about it.
There is an alternative which may suit. In my area it is called Flexicare but it has other names in other areas and not all areas have them but it may be worth finding out about it. Basically it is a complex of flats so you have your own front door but there are care staff available on site. Whilst not exclusively for people with Parkinson’s is does allow for variable care to be given depending how you are on the day. In my area with a condition like Parkinson’s they allow you to forward plan so I have had my name down on the waiting list for a few years, I just confirm each year I want to remain on the list but it means when and if the time comes I am already off the starting blocks. If there is such a scheme in your area it may be easier to make a move there than move per se. Although I am keeping my name on the list, I probably won’t be taking up a Flexicare offer. The reason being that the sale of my flat will mean I have quite a lot of money in the bank and that means I will have to pay full market rent and any other charges and won’t be able to claim anything until I drop below the savings limit. This means the funds from the sale of my flat will gradually decrease and I won’t have any way of replacing that to pay for any other long term care I might need so I have changed tack. I now think the best way to protect my only asset is to move into one of the new care homes - which are more like 5 star hotels - and use the money from the sale of my flat to but an annuity to pay the fees. This would also mean I only have one move. Your situation is different because you’ve already sold up, so Flrxicare or whatever the scheme is called could be ideal for you both. See what I mean aboiut having to think in a way you wouldn’t if you didn’t have Parkinson’s.
Incidentally, I share your wish for a more constructive answer sometimes. My normal pressure hydocephalus has several similar symptoms to Parkinson’s and I get a lot of ‘it maybe….’ Nowadays I tend to think what does it really matter which is the cause I will just deal with the consequences but it is another thing that occupies your mind from time to time.
It was good to hear from you and I hope this has given you something to think about. If you do want to go into battle to move I will help if I can.
Merry Christmas to you too - let’s hope 2024 is kind to both of us
Tot
Hi Tot just read your post and I agree with everything you have said, I will look into the matter after Christmas. I will let you know the
outcome via the site.
sue xx
Thanks so much NeilT for your encourgement, I must admit it does help, but if you read my message to Tot you will get the jest of what’s going off. At the moment my exercise class as finished till Jan 24 but i do a lot of my exercise at home, I stick Alexa or U-tube on and just dance away, I hope you are keeping well? well as we can having PD but who cares be Happy!!!
Merry Christmas & A Happy New Year x
Hey,
Ensure you allocate sufficient time for your daily tasks to avoid rushing. Don’t be disheartened if certain exercises or tasks feel challenging at times. Take your time to accomplish tasks independently, regardless of the pace. Focus on one activity at a time, refraining from multitasking. Stick to a consistent routine of simple exercises.