I am in the advanced stages of parkinson'... - Cure Parkinson's
I am in the advanced stages of parkinson's. I had to stop working, I worked all my life. What do I do with my time, I feel useless and bored
Hi pdmcc,
How many years have you had PD? my husband has had it for 9 years and has had DBS on Oct 1 this year. He is struggling with it still to get the settings right.
He has felt the way you do for years. He was 53 when he was diagnosed and did not want to stop working that way. He was not ready. He wanted to save more money for retirement and move us to another home. It has been very hard on him too. He is always bored. We go shopping alot. If we don't buy anything we just look. He can't stand to stay home. He gets depressed. We play games. We like Rummykube and Mexican train. He has friends that come to see him. He talks on the phone to friends and family. But he is still bored. I try to get him interested in a hobby but his hands are not as nimble as they used to be. He misses working on cars. He loved doing that.
Do you have an association where you live? Sometimes they have seniors get together and play games or talk or go on short day trips. Maybe you could do that? Or if not, how about a Senior center in your area? There is one near us and they have pool and card games and bingo. It really is a nice place for people to get together to talk and pass the time together and make friends. I hope some suggestions help you. I have tried them with my husband but he does not want any part of any of them! If you don't either maybe the two of you should talk and maybe you could help each other out figureing what could work for you and him!! 
That would really be helpful to me!! Message me if you want to talk to him!!
Mary
Wow, another Rummikub fan. My hubby and I play it often, along with Rummikub dice and cribbage, to have fun while helping to keep my mind thinking numbers.Great games, any others?
Hello pdmcc
I had been made redundant 18 months before I was diagnosed, so I had a rough pattern to my life.
Most imortant is to find your local Parkinson's Support Group.You can choose your own level of involvement.
Then there is the local Council. Start with level footpaths we need 5mm, less than half the legal maximum of uneven lumps. There are plenty more issues you can take up with them, but try and do 1 at a time, otherwise you will run out. Some issues can be revisited anually - such as overgrown hedges blocking the footpath. That's a good one, and you usually get very speedy help when you ask the official to picture his/her mother trying to get past in a wheelchair without the danger of having to go into the road.
Have you considered an allotment?
And my biggest success is becoming a regular correspondent on the Night-time community on Radio 2. There are regulars from around the world on the Alex Lester (weekday) and Richard Alinson (weekend) shows. When I started, I told them in e-mail that I was up because I was having a bad night with Parkinson's, and they read that out to millions of listeners. Now I manage to get a least 1 e-mail read out almost every night, and I sign it from Adrian, Sushi and Mr Parkinson, and they always read that in full, so Mr P is gradually becoming known as a part of every community.
Do you have a garden?. There is a lot you can do even when the joints and muscles start t disobey you. You can even raise some beds.
Do you have a dog? Mine gets plenty of walking. The trick there is to miss the preliminary bit through the streets by taking it to the exercise area in the car. It gives you both a much better quality of exercise. Of course, this has to be done within the constraints of your own ability. My big walk is the first one of the day. 3 miles, but it takes around an hour and a half, and Sushi seems to know when I need a rest, and literally drags me to where I can sit, and she will not move away until she considers that I am ready. You do not argue with 28 kilos of Tibetan Yeti Hound.
Hope this helps
Adrian
Hi, I to , did not want to stop work, I was only 61 and had planned to work till I reached retirement age. My husband and I had planned out our future. Parkie's was not on that plan.
Because My parents isolated themselves,more or less, I did not want to do the same thing. I got involved in the local association, became treasurer, many years, then I was invited to be a member in the State/län(swedish) commitee.
I. too, agree with having a dog. It gets you out, you meet people (they become your "doggy friends")Depending on how old you are, ther's always pensioners group etc, join the local gym
you, of course, ask for assistance for training. Keep your brain active, very important, crosswords, pussels etc. Hope all turns out ok for you
hi try not to despair,dont let work define you and do not le parks define you,its a fight on a daily basis,i got sick at 35 was only diagnosed at 41,had dbs at 49,,not very sucssesful,and i try to find things to do ,i look 4 projects in the comunity that i can volenteer at i take a course once aweek i feel very bad most of the time but when im able to help someone in any capacity sometimes just listening ,it helps quite a bit ,i also do alot of cooking therapy ,as long as someones round to clean up and swep the broken dishes aftter me ,i refuse to hide any more no matter how uncomfortable i am and how people percieve me,i do the freezin thing quite often,get out there ,make a differnce in peoples lives u have a lot to give,and educating the masses is always a treat,go get um,happy holidays.good luck
For instance he loves working on cars if you can't do it why not teach it?
I bet there are many youngsters in the neighbourhood who would love to be able to tinker and service a car
You must have years of experience of life why not impart it other people?
Look in your local directory for volunteer groups, I bet you have a lot to give in life.
don't get bored that is the road to decay.
Well becoming unemployed or having to retire early results in a lot of change, loss of income, loss of status, loss of cameradirie, loss of opportunity to be creative. These and probably others add up to a lot of change that requires a large amount of adjustment to and then there is the adjustment needed to mange the PD as well. All this adds up to quite big deal
How about part-time voluntary work. For example for those in the UK what about the Citizens Advice Bureau. How about training with the Samaritans - now there's a worthwhile occupation.
I can only endorse what Oldtyke says when he said " I bet you have a lot to give in life.
don't get bored that is the road to decay".
These are just two ideas. Can you make a daily walk and exercise program your "job". Set the alarm and go even when you don't feel like it, like work. Also, dogs don't care if we shake and drool and nap alot. So many dogs are abandoned and abused. Can you adopt a companion dog to care for? That is a profound contribution. Kindof like that bumper sticker "who saved who". I am dreading the day I can't work, I completely understand. Oh, here's another idea. Elementary schools value a grandpa to read to the kids. That could really help the kids and the teachers, and it could be a short shift (an hour) so you could time it right with your meds. So many kids are far away from their grandparents - these volunteers are cherished. And sweet little kids have a way of making us smile.
What did you love before you got PD? Don't give up on it. I lack the concentration to finish the daily papers, but keep up with news online and on TV. Enough to converse with folks. I read and pray out loud. I'm convinced it keeps my voice LOUD. Also sing to my guinea pig and in my PD classes when there's music. Do carry on!
Have you considered being part of a clinical trial to aid in finding a cure for PD?
I bought a tablet. I am 54.
You and I are fortunate. We have all the time in the world to do anything we want to. I was diagnosed with PD in 1998. I finally stopped working in 2007. I have become an avid bird watcher. If you can't go outside, bring the birds to you by putting birdfeeders outside your windows. If you can exercise, do it. Treadmills are good for this or a simple walk in the neighborhood will do. This will keep you active longer. Crossword puzzles and other word games can exercise your mind which is as important as exercising your body. Studies show that people with PD who exercise their brains have less chance of showing signs of dementia later on in life.
