Hi, I am Michael, as i said in my profile icolation is my concern. Before my diagnosis when i was working and had no health problems this was not an issue. But over the six years since diagnosis the phone has stopped ringing and no one visits. I now feel i am bothering friends and family by contacting them as they have nothing to say to me. I sit in the house, i want to go out but do not know where to go. Working was my main purpose in life but my off periods are to unpredictable for any sort of work. Is there anyone out there with similar issues ? and if so, what do you do ?
Hi Michael
Welcome to the forum while I don't live alone when I had to give up work I found myself with nowhere to go and nothing to do, so found all the local community projects and volunteered to help, some of the things I do I would never have done off my own back and have found some really good friends , every one knows I do what I can when I can and if I don't turn up for a few days someone always rings to check I'm ok,
Give it a go it gets you out and restores interest in life.
Live well Cc
Hello Michael - I used to live in the north-east in Sunderland, but left when my dad got a job in the midlands so he moved as all lock stock and barrel here. It was strange at first (I was only 13) no one could understand my accent, kids at school asked me if I was Scottish, then Irish, then last came Welsh. I remember defending myself and told them I was English just like they were. People in the midlands did'nt seem as friendly as Sunderland, so I'm surprised that folks have 'turned their back' on you, life these days is'nt as it was years ago. But having said that some of us on this forum that have noticed (I for one) when I am out with my OH people who we know always seem to address him and don't let me in on the conversation, it's as if I have become invisible!
Anyway your best bet is have a word with your PD nurse to see if there is a local group you can go along to and meet others. Otherwise phone the help line, they might have the address of a parkinson group for you. Take Care and keep posting - Sheila
Aye aye Mike ma boy welcome to this place we will always talk to you when we get a chance , and for daytime I suggest you go get a job at your local charity shop ( it would be good crack ) and if you go off you can go through the back a while till med kicks in try something good luck
Ian
Thank you all for your replies and advice. It is great to know there are people out there listening. I tried charities but had no luck but will try again. I also intend to share my experiences on here, especially with benefits advice, which i had a lot of problems with. Just getting used to using this site. I will not give into this disease, thanks Michael.
Hi Michael
I have had PD for nearly 17 years but was able to carry on working until 18 months ago.
I was lucky in a way because I was just reaching retirement age but I was feeling able to work an extra year and received a bonus. I did struggle in the second part of the year but I managed to get there in the end. I must admit that I was.feelng sad but that feeling didn't last for very long.
Since then I've been going to a day centre twice a week. This gives my husband a chance to do what he likes. His first choice would have been playing cricket but he isn't strong enough at the moment as he's just had a knee op so he's taken up Indoor Bowls.and he really loves it!
Unforturtately, I've come to the decision that I'm not feeling safe enough at the moment to go anywhere on my own. This means I spend a lot of time at home but I've spent loads of time filing papers we need to.keep and paying the bills etc. When I have the time I like to paint and learning to play.piano using free lessons on the App.
I have a lady that comes round to see me once a week from my local Community and someone from the carers agency comes to see me for 3 hours once a week. This time is really for OH to do other things but while she is with ma she is happy to take me to the. Library, shopping etc.
Of course my daughters help when they can but sometimes it really feels a big gap from Friday 'till the following ,Wednesday/Thursday when I go to the day centre.
So it can get lonely and tedious at times but I try to distract myself and get involved with something else
Hi Casie,
Thank you for your message. I like you no longer feel safe out side on my own anymore because of falls and unpredictability of off periods. I have two sons, but they are not close both have children and work, so i do not see much off them. We all went to caravan for five days at end of June. I have felt very depressed since being back on my own. That is why i joined this site and people like your self have been very helpful. Looks like i need to stop the self pity i am feeling as i am aware that there are folk allot worse off than me. Maybe a hobby would help, like you i used to paint and pastel draw years ago, i may try this again. Plus i may get in touch with PDUK to see if there are any day centres in my area. Thank you for your mail and ideas Michael.
Hi Michael,
Sorry that you've been feeling depressed lately. Just so you know, if you would like to find local support groups you can search using your postcode here: http://www.parkinsons.org.uk/content/support-you
Also, please feel free to call the Helpline on 0808 800 0303 if you need any more help or just want to chat. We are open from Monday-Friday 9am-7pm, and on Saturday from 10am-2pm.
Take care,
Edwina
Moderation Team
Thanks Edwina, i will try that search option Michael.
Reply to Michael.
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Hi michael,
you say you have experience of the benefit system.i went for my pip assessment last week.Was interviewed for 1 hr 30 mins.Now feeling very uptight waiting for reply.Have you been through this.? Wishing you well.xx
I also work part time but dont how much longer i can keep going.and what i would be entitled to ,Would be glad of any advice
Thanks x
Hi Michael
Just to say sorry for the other day. I wasn't trying to be offish. I meant what I said but I didn't mean to be so "Bossy". I realised that I didn't even sign off!
Have a good week
all the. Best.
Casie
Hi Casie,
I found nothing wrong with your post and was very greatfull for you taking the time to respond. I think there are times we need some one to point out what may seem obvious to others. I am feeling allot better since joining this forum. Many thanks Michael.
Hi Glasgow girl,
PIP is a very complicated benefit to claim, now you have done the assessment there is no point in worrying as this stage is now out of your hands.But if you are not happy with the decision, do take it to the tribunal as i found the hearing very fair and i won two benefits after being awarded no points.You can get a good idea of what you are entitled to on the GOV.COM website which explains how it works. I got help with my appeal from the CAB, my local MP and my parkinson,s nurse who pointed me to a benefits specialist in my area, all free of charge. It takes time but you get every penny back dated. I hope this helps as i know how upsetting this all is when you are dealing with our disease, All the very best Michael.
How are you doing now Mike ? Managing okay these days how's th PD affecting you ? The walking is my big prob
Ian
Hi Ian, like you walking is difficult for me but more of a problem is upredictability and length of off periods as drugs not working as good as they once did.Also frustrated with promises of new drugs and treatments that never materialise. Where about in Scotland do you live?, was up there quite allot when i worked, lovely country.
Michael.
Aye aye Mike
the dr are very economical with the drugs it's a job but that's the way of it , we live in strathspey lived here all my life got to go for now I'll give you a shout later
Ian
Hi Ian,
Thanks for talking to me. So glad i joined this forum as i am meeting nice people. Looking forward to future chats with you.
Michael.
Aye Mike
how you doing the night. ? Have you ever been up the Inverness way at all what was your job , am still working for a builder don't know how much longer I struggle a bit now but I will go on working as long as I can . What part of the country are you from yourself Mike ? Aye as I was moaning about my walking my left leg goes into a sort of spasam cramp sort of way when I start shaking and I can't walk through a shoping mall now too many people I freeze its a bugger , take care o yersell
Ian
Hi Ian
Yes i have been to inverness, we went there when we did a job to Gairloch. I used to do furniture removals, just a small two vehicle company, but it made me a good living. I now live in Gateshead, tyne and wear. You do right to work as long as you can, because believe me you will miss it. I hope your PD makes very slow progress, all the best
Michael.
Hi Kev,
Thanks for your message, i have a sister in Werebee Melbourne, though i very rarely here from her. You are the first person with Parkinson,s i have encountered outside the Uk. My Parkinson,s is much worse when the weather is hot, which i would imagine is your normal weather. I live in a small flat in an urban enviroment so my hobbies are painting, drawing and writing etc. I could not imagine having the amount of space you have. Best wishes
Michael.