Not sure if I’m in the right place so hope I am. I have had Parkinson’s for some time now but only just picked up the courage to join and introduce myself. I was diagnosed in Autumn 2021 but, with 20/20 hindsight was exhibiting symptoms since at least 2015. The more I read, the more I see little things that were happening but I put them down to other things.
I’ve sacrificed so much in my life to the support or care of others {as a housewife, then as a carer for my late parents} that I’ve not really had a life of my own, so to finally reach near retirement and be able to have some time for me was an adjustment. Don’t get me wrong, I don’t regret my choices nor do I begrudge anything, but I didn’t expect to be in need of looking after myself in my 60’s. I thought I’d have a few years left in which to enjoy my retirement. Turns out it’s anything but. Of course, the pandemic hasn’t helped. I used to be fit, healthy, very active, and never still. Now my weight is making me feel sick, and my fitness is zero. My late 50’s saw me become involuntary housebound as a sole, unpaid caregiver for my parents. They died the year before the pandemic and I went back to work. However, right before the first lockdown I lost my job due to restructuring and last in first out. I was barely reestablishing myself when the rug got pulled. Since then, I’ve become increasingly isolated, and to put it bluntly, one of the forgotten ones. My brain is still very active but now I sit in my chair at home all day long on my own, television is on all day. I can no longer read because I can’t hold a book. I do manage to do some drawing and painting, but don’t know how long I will be able to hold brushes and pencils. I hate going out because of people staring, stupid inane comments that are made, and the general state of the roads where I live is not good if you have mobility issues. There, I am sorry if I’ve gone on too long but it’s time I got it off my chest. Thank you for listening.
Hi Artgeek,
We wanted to take a moment to welcome you to our community forum. We’re sorry to hear about your current challenges, but we do think joining the forum will be a benefit, not only as our community members are open with their advice and experience, but as many of them express their feelings creatively, as you do. Please have a look at our arts threads and you will find poets, humorists, musicians, and creatives of all stripes who have felt these same things and faced these same burdens and who often express them with great beauty.
Just so you’re aware, we have a free and confidential helpline on 0808 800 0303 staffed with advisors with a wealth of support to offer. They are always happy to help even if that means just listening. Added to this we have a website at Parkinsons.org.uk where you can learn about research, community opportunities, fundraising events, and even archived forum discussions. Please feel encouraged to have a look as you like.
We won’t minimize anything you’re feeling, and our community’s optimism is hard-earned, but we can assure you that it very much is a community sharing struggles, wins and losses, and above all supporting each other.
With our warmest welcome,
Jason
Forum Moderator
Good afternoon Artgeek. Welcome to the club. I looked after a loved on for 10 years.
Then I got Prostate Cancer & then I got Parkinson’s. This is life I guess, no point in looking back on life with regrets. We all make the right decision in looking after loved ones as they would have looked after us.
I was referred to the PCN network by my GP & they have been a great help. Do ask your GP for a referral or contact them direct.
They got me a blue disability badge & the Attendance allowance & had my flat made more disabled friendly & got me a 6 week course with the Neurological Physiotherapy department. All free of charge. All helped a great deal.
Best of luck
Steve2
Hello again Artgeek
This has turned out to be quite a long post and I may have read you quite wrong - if I have I can only apologise. However I always try to be honest in my replies and what I’ve written reflects thoughts that came to me on reading your post. I am not trying to tell you what to do, only give you some way to feel a bit more hopeful about your life and future based on what you have written. I hope you will read it and see it as something positive - whether or not you choose to do anything about it or when is for you to decide - and there will be other ways to kick start your life if that’s what you want.
Welcome to the forum and good on you for taking the plunge. It’s not easy and you can only do these things when you are ready. It’s not hard to feel cheated about life when something like Parkinson’s hits. Everyone has to find their own way to live with it and sometimes… I think there are as any different ways as there are people but what there isn’t is a right or wrong way, just the way that is right for you as a unique individual.
Forgive me if I am reading this wrong but it’s what came to mind as I was reading your post and that is now you’ve finally found the courage to come to the forum, you are perhaps interested in changing some other parts of your life. If that is anywhere near the truth I’m guessing you would like to do that but the reality of actually doing something about it is, to put it bluntly, a bit scary and you may be lacking a bit in confidence.
All is not lost Artgeek you just need to take one step at a time. So taking just a few bits from what you have written and in no particular order.
Books. If you like to read you could invest in an ereader. I have a Kobo Libra which I love, It is easy to hold and use and you can borrow books from your local library and download them directly onto the ereader. Ereaders are made for reading books and in my opinion it is worth investing in one rather than reading on a computer screen. They are lightweight and portable and easily slip into a bag if you are out and about.
Weight. I can understand that your weight bothers you so much when you used to be fit and healthy but it is in your hands to do something about that. Personally I wouldn’t consider going on a diet but instead get a better relationship with food, It may take a it of time to lose the weight but the aim is to keep the weight off. For me the first thing I would do is set a manageable goal. I wouldn’t say I want to lose a stone or 2 or 3, that’s too big - aim for 2 lbs a week and in a month you could have lost 8 lbs. The second thing I would do is become a ‘mindful eater’ In essence that means being aware of yourself and whether or not you are really hungry - when was the last time you heard your tummy rumble? Also make sure you are hungry because you could be thirsty so have a drink first and wait half an hour to see if you really are hungry and take note of when you feel full and beware of comfort eating and that second or third biscuit. I am sure I am not telling you anything you don’t know but if you start doing this sort of thing you will find the weight will start to drop off, you will feel better about yoursself and can maybe then start to look forward.
Exercise. It is well known that besides medication regular exercise is the best thing you can do to help manage your symptoms. Fairly recently I came across a series of exercise videos for people with Parkinson’s and there is a video for just about every problem it can bring. I use these myself, I’ve tried others but they just don’t hold my attention. These you can do at home, don’t take much equipment and I feel they make a difference. This is a link if you want to take a look.
Exercise will obviously be beneficial to your weight loss too
Going out. It is not easy going out when you feel people are staring or making silly comments but you should stand proud. They are the ones with the problem not you, but it can help if you have a few responses ready to counter any comments made - more than once when being a bit slow in a shop and I can sense the person behind me is getting annoyed ‘yes I get fed up with my Parkinson’s making me slow too but it won’t let me go any faster’ usually they will back track and say ‘take your time.’ Do try not to let other people stop you. Unfortunately I can do nothing about the state of the roads lol.
Once you take control over those parts of your life you can do something about and start to feel better about yourself maybe you will have renewed confidence to be more outward looking - maybe join a support group, or a local yoga class for example.
I wish you luck Artgeek. You only have this life and this day once. Don’t you owe it to yourself to make the best you can because you are worth it; we all are and you are much more than whatever Parkinson’s throws at you.
Best wishes
Tot
Wow, that’s comprehensive. Thank you for your time. I would love to reply to it all but may do so in small bites. I’ll start with going out. First. I live in the back of beyond. I don’t drive. I don’t have transport. Also because of a back injury, I have extreme difficulty getting in and out of a vehicle. We have a service called country cars. Unfortunately, there is only one voluntary driver in my area and his vehicle is too low so virtually inaccessible for me. As for the state of the roads there is no pavement so I have to walk on the road in traffic. Where there is a pavement it is either too narrow to take my walker or it is one of those awful flat pavements level with the roads. Where you take your life in your hands as traffic ignores the curb. Also, the immediate road near my house is only one car wide and full of potholes. Not something you can negotiate easily with a walker. or reduced mobility. I have taken the state of the roads up with the local council to no avail. I am at the mercy of drivers who do not think I have any right to be walking where they should be driving.
There are not very many groups to join within reasonable walking distance and disabled access is not something you find readily in the village where I live. I am often confronted with issues such as at the local pharmacy, a door that has to be opened manually almost impossible when using a walking aid. Same at the dentist. I went into this small grocers shop the other day, only to be confronted by narrowed aisles And on delivery day filled with boxes like an obstacle course. Coffee shops and cafes are so full of tables and chairs so no room to move a walker. Many properties here also have steps which I can no longer negotiate, such as my hairdresser. Its easier just to stay at home than to confront the frustration.
I do have an E reader, but unfortunately, my hands shake too much. I have tried audio books, but to no avail as my mind wanders off, and I can be listening for an hour and not hear a word.
I did join an online Tai Chi group but they changed the day and it clashes with my one day I go to a local day respite. My biggest fear of working out is falling. I’m going to check the link you sent today.
I’ll be back soon. Thanks!
Hello Artgeek and I can understand completely what you say. One of the difficulties of replying to posts is that you don’t actually know the circumstances can only go on what is written - there is a lot of second guessing and reading between the lines to try and come up with something useful and which might actually help. I will go over again what you say now I know a little more and put my thinking cap on - although I have to say the state of the roads is something neither of us can do much about except complain. Do try a video many are seated or there is a seated alternative so you won’t fall. I should say they are american which doesn’t bother me but does irritate some. My favourite videos are by Lauren Lewis, she builds up the exercises so that by the end of the video you are doing a complete routine.
Tot
Thank you. Please, what is PCN? I have a Blue Badge. I have been told that my bungalow is not suitable for modifications such as handrails and ramps. I do think I should badger them on that. I don’t think there is a Neurological Physiotherapy Department here.
Hello again Artgeek … I am wondering whether I should suggest you move home to somewhere more disabled friendly. I moved to a 1 bedroom ground floor flat from a house with a large garden, this was done before Parkinson’s. Thank heavens
I moved.
Best wishes
Steve2
Hello Artgeek. PCN = Personal Care Network. Get a referral to them from your GP.
[image]
NHS England
https://www.england.nhs.uk › primary-care › primary-c…
PCNs build on existing primary care services and enable greater provision of proactive, personalised, coordinated and more integrated health and social care for …
Network Contract DES · Resources and support · Development support
Hello again Artgeek
you have probably thought of this but in case not what about a stand for your ereader so you dont have to hold it. There are lots of different ones but I personally like this type which is what I have.
Tot
A big welcome to our friendly group, I think most of us can relate to one/some what you have said. it is hard if you have mobility issues, I live at the top of a steep hill. my hubby broughty me a mobility scooter I hated it, but then looked on the “Positive side” when I go into the village I have made quite a lot of new friends who have simmiler issues, I think what you should say to your self is fotget all the thinkgs you could do and now can’t, take the bull by the horns, look ar other ways, to enjoy your life, there is always help out there you need to find it, sorry to go on but there is only one person who can change your life, I used to be very active looked after mum for 6/8years after dad passed away mum had dementia, I have 2 brothers but as they lived a long way from mum, then it was up to me. I also find it hard to read a book.can not consentrate for long, no longer do line dancing /tai chi/ or go dancing, you find other things to do, Work i loved my work and would like to go back for just a day, no chance. Try to stay positive and do keep posting if you want a moan!! you can do it here, just remember we are all in the same boat any help wanted we are there for you,
I totally agree mary1947
Tot