Have just been on holiday and found it extremely tiring, my Parkinson’s is not controlled well although am due new meds this week! My partner and his friend wanted to go to the beach but the access had extremely deteriorated, he said you’ll be fine just take it steady but with my swimmy dizzy head and lack of balance I couldn’t manage and had to go wait in the car. I had a huge emotional response to this and felt a failure/“chicken” and left out as they continued to the beach. It was a really shingly loose rocky steep path and I just couldn’t manage. Where do we draw the line as to what we try to do, obviously I was taking my own safety into account but should I have pushed past my fear of falling. I can feel my life getting smaller and keeping up with others increasingly hard. Thoughts? Also anyone else much more emotional and anxious, my anxiety is through the roof, it’s hard to know who I am any more.
I recognize this. I worry about eating and drinking in a public place. I can do it if I am with other Parky people, but simply can’t face the possibility of problems if I am with a non Parky group. I know it annoys some family members, I eat a meal with them at home and there is no worry, but I cannot go to a restaurant with them if my children’s in-laws are going to be there. The panic leads to me dropping out and I know it upsets them.
Hi Mosie thanks for your reply, it’s so hard to make other people aware of where we are at and what it takes to do just normal things. I think it’s hard for people to understand Parkinsons side effects and symptoms unless they’ve experienced something similar.That’s where groups like this are so important. I don’t feel so alone as people here understand what it’s like. I think I need to work on self acceptance as I am now.
I have just returned from holiday in Florida. It included being outside my bubble of comfort which PD is apt to cause. I was anxious before and during with family support I managed to push through and now on return I feel better able to push boundaries.
Totally understand your feelings. What I feel about PD is that the more active you stay the better you feel.
Your post is a very articulate description the sorts of dilemmas many of us with Parkinson’s are faced with at one time or another and the fact is there are no easy answers because it depends on so many factors many of which will be unique to you and your circumstances. All very well but not very helpful I hear you say. I can only tell you what I do and it is something I have written about many times here on the forum.
For me the most important tool in my box of coping mechanisms is to stay positive and I believe the biggest challenge is suppressing what I call my Parkinson’s brain - very loud and very negative - for the quieter, positive rational brain turning negatives into positives. Taking your post for example, if you turn it on its head you may have written something like this
My partner and his friend wanted to go to the beach. They felt I could manage if I took it steady. I had a look. The access was poor, loose shingle and a steep cliff path, I knew I was feeling a bit dizzy that day and my balance wasn’t the best so made a judgement call that the risk was too great. I told them to go ahead and have a good time and I would wait in the car and read (or whatever) and they can tell me all about it later. (If it’s any consolation I wouldn’t have attempted a path like that either.)
Living with Parkinson’s means making judgement calls on something or other many times a day but ultimately the decision has to be yours. If you tried something and it doesn’t work out it doesn’t make you a failure, it’s just something where the risk was too great; if others can’t see or accept that, it is their problem, not yours.
You said you can feel your world is getting smaller and indeed that is true for many people including me but again it depends on your view. For me positive logical brain needs to be the stronger voice. If you spend your life lamenting what you can no longer do instead of concentrating on what you can do, Parkinson’s brain can run riot.
The fact is the most important person in living well with Parkinson’s, in my opinion, is you. Parkinson’s is not well understood by many people and you can try to explain, to educate if you like but unless you are living with it, most will not really see your concerns and make well intentioned remarks like ‘you’ll be alright if you take it steady’ as was said to you when quite clearly dizziness, balance issues, loose shingle and a steep path add a jeopardy that your partner and his friend didn’t face when it probably wasn’t the easiest route to the beach for them either. So people must take their cue from you, following your lead on how you want to live with your Parkinson’s.
For me as I said the answer is turning negatives into positives. I am not suggesting it is always easy, I have my moments of course I do but my family and friends have long accepted that my view is that I have Parkinson’s, it is part of who I am but it doesn’t define me - I am Tot first and I happen to have Parkinson’s that’s it. I make no apology for it and make whatever judgement calls I need to to fit how I am or whatever I am doing on any given day since it’s a fact I can’t change. My way may not be your way, but if you can try and find a way to make some kind of peace with your diagnosis and its impact it can help you manage all the other things that come with it.
One final thing to say. This trip to the beach may not have worked but there are plenty of other beaches where you wouldn’t have a problem. It is worth doing some research before you go, especially places you don’t know, so that you can all have an enjoyable time. If for example a return trip to this beach was being proposed maybe they could drop you in town to do something you would like to do and meet up later. If you want to join them on the beach, find one that has a safer way down for you - we live on an island after all, nobody is very far from the sea.
Finally, final I an not naive enough not to know that with the uncertain future we all face, my way will see me through for ever and a day. It has however served me well for 13 years and until such time it is less effective, if indeed that is my future I will carry on as I am and critical cross that bridge when I come it
Don’t beat yourself up, you have Parkinson’s, you can’t change that so why not find a way to make it the best life it can be and start living.
Thank you all for your comments. I was diagnosed about 4 and a half years and it took me a long time to come to terms with it all.
I too try and be positive but my PD brain caused a lot of negativity but I’ve tried to push through it. I had days where the swimmy head and just feeling ‘ill’ made life unbearable and me very unsociable.
My daughter then had twins and I managed to turn the corner determined to help her, not all went to plan, I’ve had to accept my limitations at times but a recent change of meds has helped.
I felt a failure but I’ve realised some days it’s not always possible to be a grandma who can do everything.
Today though I felt a right twit. I was helping my 23mth grandson at his gym club whilst his mum was his twin sister’s partner and I thought I can get down on the floor with him and join in.
I then tried to get up after the opening warm up(mainly singing with these tinies) and I just couldn’t do it and fell and twisted my knee
I was so embarrassed as the gym instructor and a lovely Dad helped me up.
I’m nursing my pride this evening but the main thing is I tried .
The uncertainty of how the illness will progress is a hard one but like Tot I try and put a positive spin on things and
laugh with the family at daft things that happen.
Tomorrow is another day but I think I will sit on a gym cushion next week and not repeat my not so elegant performance of this morning.
Sorry if I’m rambling but it was good to share the annoyances of PD with others and read your thoughts.
Best wishes to you all
Hi Suzanara, I can totally understand your situation. The taking of medication requires a good routine, as soon as this is changed things get difficult. However regimental you are when you are on holiday it’s inevitable that the routine slips. Days out, late meals, different time zones etc all have their effects. I had a complete meltdown for a few hours during a holiday in France.
If you know to expect this and can explain to your friends and family it makes it much easier to get through. Just remember you’re the one with pd and will always have the power over it either by overcoming it or accepting it and changing your mindset to suit when necessary. All the best Hemyock
I’m going on holiday July i always talk to tui assisted help welfare it’s no stress and when book holidays always make sure there good for disabled people
I sympathise with you entirely. It’s difficult to come to terms with each new constraint. One approach that I have found helpful is to say to myself that the constraint might well have come anyway due to the normal ageing process and what would my reaction be if that was the case? It would have been to accept it with a sigh and move on determined to make the most of the new situation as being an opportunity to try something different. It certainly doesn’t help to dwell on the situation but take it as being an opportunity to do something different. Hope this helps. John
I always enjoy (if that sounds ok?) reading posts on the forum on how others are coping with PD on a daily basis; I take comfort from knowing, sadly, I’m not the only one! And especially so today reading your honest account of your day at the beach and the post on eating out, on both accounts I could have been reading my own journey/life, that is exactly how I feel, upping my meds has helped, not that I wanted to do that either, but I just thought give it a try as life had became very difficult.
like all the posts have said we have to find our own way and try to be positive, how true; easier said than done at times, my takeaway is be kind to yourself especially when you’re feeling rubbish! If all else fails……… Eat chocolate and/or lie on the sofa all day or whatever gets you through!
My heart goes out to you. My first thought is how on earth these people could enjoy the beach without you and leave you sitting in the car. Why did they not suggest an alternative?
People just dont get what its like to have parkinsons , it is totally life changing
Fatigue is common , mine has improved a lot since the doctor noticed that my vit D levels were low however i just do not have the capacity to walk very far now.
You need to draw the line under what you do or do not undertake on that particular day.there is only you who can decide.
I liken it to this. Each day i am given a bag of apples, each apple is a quota of my energy for that day. There could be any number of apples in the bag, from 1 to 10 , but heres the thing i dont know how many i have until the last one is gone. I rarely get 10 apples theses days and on the days when i have only one or two i cant do anything much. Getting up and dressed is about all i can manage. Its a good way to explain it to people.
I take meds every 3 1/2 hours which is a pain so i either carry a small flask of water with me or if i dont want to do that i put water in a travel size bottle for liquids.
Stand up for yourself, you shouldn’t have been left alone.