For those of you who aren't able to work any more. What do you like to do to fill your time? If you do crafts, what kind of a craft do you do?
I'm hoping all of us can share our ideas to help others (including myself) come up with new things that we can do to fill our time.
Thank you,
Ben
I work out at home and home and in the gym 2/3 hours daily
I volunteer every day at a local senior center
I am active in a local Boy Scout troop
I spend lots of summer weekends at a friends cottage
I play cards one night a week
I keep my self busy doing something most of the day
After 40+ years in the IT industry I've retired and aim to contribute software to the Open Source movement, where computer programs are freely available to anybody who needs / can use them. I'm currently undertaking a self funded training course 8 hours a day to further develop my programing skills in a particular direction.
I have a singing lesson once a week, which I love. I also do Tai Chi and Pilates. I like knitting and cooking (although I need some help with lifting and straining saucepans now) and I am much messier than I used to be. I do still work one morning a week, but this is all I can manage now without getting too tired! I do a lot on the computer (I find the iPad flat keyboard much easier than ordinary laptop). In fact there never seems enough hours in the day because everything I do takes twice as long as it used to.
I like to read books but usually do this of an evening when I can relax better.
I get visits from friends at least once a week and try to 'do the rounds' visiting friends at least once a fortnight - if I feel 'up to it'.
I have just had my room decorated - so it has been 'all go'. I am waiting on a piece of furniture to arrive to complete the room then I can move my exercise bike back in and start using it again.
I used to attend a gym two or three times a week up till recently but had to stop due to the gym closing - I am looking for another local gym that has the same sort of easy access and moderate support and hope to sign up soon. If I cannot find such a gym I will continue using the bits of fitness equipment I have.
Computers are my 'thing' and I use my main computer for various activities. Sadly, I can only use the PC for a limited time due to fatigue, discomfort and the sometime limits of shaky or unresponsive hands. On the flip side of that, using a keyboard and mouse at the computer is good exercise for my hands! Computer activities include; Home office, online gaming (with a great social aspect), internet shopping if needed, LWA and other forums (social again), programing / scripting / coding when I feel up to it and to keep my mind active, light video work and light audio work.
I occasionally make paper-craft models but have had to cut way back on this because it is so very fatigue inducing and because of the problems I get with hand control / pain.
I love watching movies but , again, I need to feel 'up to it'. I just got a new powered adjustable bed and it helps me sit up comfortably for reading or watching a movie or such. :) (I would normally only watch a movie or read a book of an evening - I'm not the type to sit in bed all day when I am able to do other things!).
I have a nice digital camera that I like to go out and about with from time to time - not often though but still an interesting activity to me.
Michael I to say using the computer is good for my hands. I Do some gaming and socializing in game rooms. I do Pogo. Is there another one that is good?
I volunteer down at a nursing home, many of the seniors family's can't visit as often so I spend time visiting with the residents, also I use my WII fit at home
Hi,
For gaming I tend to keep to the Free To Play (F2P) or 'pay once then F2P' Massively multiplayer online role-playing games (MMORPGs). I play against the environment and have some social interaction in game and associated forums.
I keep away from player versus player (PVP) and only group with people I know. This is mainly due to the fact that I just cannot react fast enough for other content and my in game time can be very limited due to easy onset of fatigue, pain and or discomfort.
Fairly good games I have used include;
Themed: World of Warcraft, Guild Wars, Lord of the Rings Online, Star Trek Online and Star Wars The Old Republic.
There are many other MMORPGs some are subscription based a few are totally free and some are free to play but are heavily affected by in game shops - be wary!
Single player online games vary greatly in social activity, in game currency / shop and site availability. Many people use Face Book and the online games there and enjoy doing so - I will not have facebook anywhere near my computer(S) though - this is for personal reasons.
I would stress to anyone wanting to give MMORPGs or single player online games should try to choose something that appeals on another level (Lord of the Rings online is good for Lord of the Rings fans for example). Also - be very wary of any in game online shops and keep an eye on any real life money that is used for 'services' / 'goods' or in game currencies - it can get expensive if we let it! And to finish; KEEP YOUR PC and any online pass codes etc as secure as you can with antivirus and good practice (do not give anyone your pass code etc)!
Lori said:
Michael I to say using the computer is good for my hands. I Do some gaming and socializing in game rooms. I do Pogo. Is there another one that is good?
Your right about everything. But I play pogo because it is free.And so far no problems.
Michael said:
Hi,
For gaming I tend to keep to the Free To Play (F2P) or 'pay once then F2P' Massively multiplayer online role-playing games (MMORPGs). I play against the environment and have some social interaction in game and associated forums.
I keep away from player versus player (PVP) and only group with people I know. This is mainly due to the fact that I just cannot react fast enough for other content and my in game time can be very limited due to easy onset of fatigue, pain and or discomfort.
Fairly good games I have used include;
Themed: World of Warcraft, Guild Wars, Lord of the Rings Online, Star Trek Online and Star Wars The Old Republic.
There are many other MMORPGs some are subscription based a few are totally free and some are free to play but are heavily affected by in game shops - be wary!
Single player online games vary greatly in social activity, in game currency / shop and site availability. Many people use Face Book and the online games there and enjoy doing so - I will not have facebook anywhere near my computer(S) though - this is for personal reasons.
I would stress to anyone wanting to give MMORPGs or single player online games should try to choose something that appeals on another level (Lord of the Rings online is good for Lord of the Rings fans for example). Also - be very wary of any in game online shops and keep an eye on any real life money that is used for 'services' / 'goods' or in game currencies - it can get expensive if we let it! And to finish; KEEP YOUR PC and any online pass codes etc as secure as you can with antivirus and good practice (do not give anyone your pass code etc)!
Lori said:Michael I to say using the computer is good for my hands. I Do some gaming and socializing in game rooms. I do Pogo. Is there another one that is good?
Hey Ben,
I am not a patient of ataxia but represent my father (here on this community) who was a patient of ataxia. I believe if your movements allow you, continue doing everything as you did before detection of the disorder ...Including reading, working out, cooking if at all, gardening, blogging, singing ..I believe the biggest weapon to fight your disorder is to live life king size..What hurts you more than the disorder is the restrictions that one starts putting on oneself because of the disorder...Do all that you like and enjoy each day!! This may sound like heavy philosophy but just sharing some lessons that my father left with me...
Regards,
priya
[I would request you to support my cause for cerebellar ataxia on this page: https://www.facebook.com/pages/Cerebellar-Ataxia/447456042007019?ref=hl]
Well Ben. Pretty good question. I do CASA (USA), however when I cannot, I donate funds (limited but I think all helps.) I help allot of friends with engineering advise. Mow the grass more than it needs.
Building a new house with more wheelie accomodations , but that was put on hold due to condition..
Tried sub teaching cuz I have a degree in engineering, but that did not go so well. Keep trying anything........
I thought I would have a lot of time on my hands, but now I wonder where the days go. Hubby & I go to the Sr. Center for lunch every week day,and we go garage sale-ing on Th, Fr,Sat, mornings and once a month set up a table at a local trunk sale. We go to church 3 times a week plus some other Bible classes on Tues and a once a month gathering at some one's home. I take my walker (rollater) everywhere but will keep going as long as I can, even tho sometimes it doesn't seem worth the effort. I also go once a week to TOPS club. (Take Off Pounds Sensibly )I am treasurer and now have to keep records on the computer since I can't write very well or at all. I have been crocheting for some time now. I am working on a blanket for new great grand due this summer, also using up mil's yarn on a bed spread and striping up plastic bags from wal mart & groceries and making tote bags from them. I signed up as a teacher on line for a Bible based English course. This has been interesting but I figure it is just as well to not have too many students. I work occasionally part time scoring on line for a big company. I just completed a project and have another one coming up soon.Usually this is limited to one project in the spring. I certainly can't put the hours into it that Icould a few years ago. Definitely the old eyes are not up to it. I also enjoy doing crossword puzzle in a book as long as I can scratch out the letters, and do several Yahoo games on line each day--word find ,crossword, 4 word cross, and sudoku. Look at facebook and would like to get back to blogging--maybe soon! No wonder there are not enough hours in the day, when you start listing it all.
Have little routines which I can do.Did do walking ,gardening and socialising.Now go further on my scooter instead of walking,struggling with the gardening and do more listening now as talking is so difficult now. Have been advised to listen to the radio more.All my old hobbies involved movement but have to adapt now.Finding the shift from mobility to sedentary difficult.Keep thinking I can do things and getting stuck and having to be rescued.Very frustrationg for anyone trying to look after me.Think it is a good topic for Ataxians as sometime it might affect a lot of us.
I do cards for a hobby, I have still a certain amount of movement in my hands and I find that holding the tools is also good for my hand movements (if you don't use them you lose them)
I solve English crossword & SUDOKUs, daily.
Well I am the not taking this very well. Had to quit driving (April 2011) because my legs weren't working and hit a handicap sign that fell into the plate glass window. Everyone okay. I was still working for Police dept and the Asst Chief (my mentor) thought it was time to quit. That was #1 big upset. I am a 53 yr old woman and moved from Kansas city to Dallas are and moved in with parents to help out my dad. Then he beat the cancer and he started taking care of me (2011).
#2 I had to quit work. I loved my job been working as a Secretary for 35+ years. #3 Gave my car to my sister in OK yhat needed a second car.
So I am not handling things right. Spend a lot of time in my bedroom on computer. On top of my Neuro disease I do not have a immune system so I get sick a lot.
#4 My dad died suddenly in Feb so it is me and mom. She still works. I am very lonely through the days. I have a hard time reaching out to my support network.
I need to get out of this "funk", my brother had a new deck with a ramp built then redid the swimming pool so I can get some exercise and fresh air on deck.
I'm sorry I am unloading but it does feel good to get it out. Sorry.
Donna, I was worried that depression was an inevitable part of all this and sometimes still feel down about not being able to do what I always have . I talked to GP about it. She asked some questions and offered zoloft,but we also talked about the benefits of exercise and also doing something to help others. At the same time she suggested not driving so much she suggested reading to someone at the nursing home--I thought yeah, if I have to depend on someone to drive me there. I did opt to forego the medicine and try the other tho. That's when I signed up to "teach" on line. I don't do formal exercise enough but Hubby keeps me moving and going a lot. I have learned to sit back and let others do things and not feel compelled to get up and find things for people--namely hubby. lol. Yesterday, I even (grudgingly) watched while daughter and grands set up and tried out an old, old Tyco race car track that I want to sell. Used to I would have been right down in the floor with them working on it. That's hard to stay out of it.. I did go with them (with the walker) to pick blueberries yesterday morning. They come almost every spring from Houston so we can pick berries. I will send you a personal message--interested in you also being in Texas.