Any hobbies or pastime recommendations please. - Ataxia UK

Ataxia UK

4,021 members4,557 posts

Any hobbies or pastime recommendations please.

26 Replies

My father was diagnosed with SCA6 about 4 years ago. He is already very unsteady on his legs and has extremely shaky hands. His speech is also affected. He has been a 'worker' all his life and not used to being confined to a chair most of the day. He has started reading alot but I wondered is anyone had any ideas on suitable hobbies pastimes I can suggest to him. He does have & can slowly use a laptop. Thanks

26 Replies
wobblybee profile image
wobblybee

Hi Marina!

Having access to a laptop or computer can be a great starting point.

Your father must be finding it very difficult coming to terms with

being so inactive, and I know how shaky hands cause frustration.

Cruising the internet can bring up interest in all sorts of things.

Lots of people on here will be able to suggest aids useful for

operating computers with shaky hands etc.

Love the cat! xB

edic profile image
edic

I have SCA6, I live alone (this is hard) in Seattle. I was very active, in my job and exercise.

I can type with one finger.

My hobbies are:

Reading, with an e-reader,

Crosswords (on-line),

Rowing (I have a m/c)

The Great Courses (great value!)

EMcK.

in reply to edic

Thank you for the information on The Great Courses. Have never come across this before but just had a good look around and will definitely pursue this idea. Cheers.

edic profile image
edic in reply to

I have many courses. Never pay full price; always get the sale price. They stand behind everything they claim.

EMcK.

in reply to edic

Hello Edic I have had a really good browse through the Great Courses and will buy one for Dad for his birthday, see how we go, thanks again!

edic profile image
edic in reply to

My real name is Edward. Depending on your Dad's interests, I can make recommendations.

Another point, SCA of any sort is frustrating to say the least. However, if you have it and there is no cure then the sooner that you accept it, so much the better.

EMcK.

in reply to edic

Thanks Edward, my Dad is interested in explorers esp. mountaineering. I also bought him the Winston Churchill series of books which he has really got into.

I had thought the Worlds Greatest Geological Wonders might be a good one to test the waters? Have you done this one?

I totally agree with you that the sooner you accept the presence of SCA the better. My philosophy is one day at a time, don't waste it live it!

Have a Great Day! Cheers M

edic profile image
edic in reply to

I don't have that course but Wysession is a good lecturer, I have his other course "How Earth Works".

EMcK.

PeteW profile image
PeteW

Maybe get an off road powerchair and go rambling in the woods (with someone) and just appreciate the wonderful outdoors

The Internet is great as I can kill hours and hours just browsing

I use voice recognition SW to navigate/write e mails etc

february profile image
february

I agree with what others have said! I'm sure it's frustrating for your dad to go from being so active, to having a debilitating condition! Getting online with this site and the Living With Ataxia site (originating in the States where I live) has been a godsend for me, as I feel less alone with this! It's great to have others to chat with that understand and can be supportive! ;o)

shazam profile image
shazam

I live alone with my ataxia. I am fortunate that I have a good imagination so when I think of a line I put it to my voice recorder, my writing being but a scrawl. It is then expanded onto my laptop and maybe an A4 story develops.

I attend an amateur writers group, helpful for company, and gain ideas there as well. It should not matter if the story is for children or scientists as both Enid Blyton and Stephen Hawkings books are entertaining to the right person.

annasgonesailing profile image
annasgonesailing

Still do things that challenge you, the use it or loose it mantra is true. Obviously do things that you want to do.

I sing in a choir (rock choir). I do origami / craft (making decs for my wedding) and I am a rainbow guide leader on the basis that if i can do a craft 5 year olds probably can too.

LOVELY_1 profile image
LOVELY_1

One of my interests is doing jigsaw puzzles. Yes my hands and fingers can be shaky too but the pieces are a decent size(I mainly do five hundred) and also so it's good in many other ways. Certainly for us Ataxians it is exercise for hand and eye co-ordination and very relaxing and therapeutic,

There are companies that will come to your home and show you aids and adaptions for your computer just search on the Internet .

My husband bought me an ipad and I find its easier to touch the keypad because the squares with letters are bigger. A help with the iPad is a stylus with is like a pen with rubber tip and you just touch or dab it on the screen or keypad and it will work like a finger giving you more control. I bought mine on Amazon for 99p plus postage which was just over a pound.

Hope that is of some help. There's always options.

in reply to LOVELY_1

Thanks bubbub, I thought an ipad with one of those stylus would be a great idea, but Dad said no good! I don't know whether he has tried the ipad or not, seems to think the laptop is better???

grumpygranny profile image
grumpygranny

How would Dad be at doing 'Scapbooks' do you think? - For family - and maybe for friends etc too. For instance I would like to do a scrapbook for my grandchildrens' 18th Birthdays - but don't have the time, or the patience with the technicalities of the computer to make a good job of it. You have to transfer photos etc on to the computer and put them into attractive order with headings etc.....

Litty profile image
Litty

The computer is a great help to us all.

Try to think about what your father's hobbies/interests were before he developed ataxia. Many can be adapted. I love 3D art and make ceramics. They really help me and are a form of therapy.

I cannot read much any more but love listening to books on Audible.

annasgonesailing profile image
annasgonesailing

thinking he might find the current suggestions (including mine) a little feminine (although I don't gender stereotype others do wheather conscious of it or not) how about some computer programming, either webdesign or something like the raspberry pi which I believe is quite easy to get started on.

Or how about OU or an evening class?

in reply to annasgonesailing

I did think OU was a great idea, had a look at some short courses, thanks!

Wow! Thank you for all for responding with such great ideas! My dad in almost 70 and unfortunately neither he or his wife are able to totally accept his situation! The suggestion of the off-road wheelchair is a fabulous idea but he just won't accept he could improve his day by using this. He is able to use his lap top and the Internet so I will try and find him something to give him some interest through that channel. Just found an awesome BBC history channel! I guess you don't find unless you look!

I do find this situation quite hard as I actually live in Australia, so communication is via the telephone or email and more importantly I have also been diagnosed with SCA6 and have found this has caused what was a very strong bond to be broken.

edic profile image
edic in reply to

Try Skype.

wobblybee profile image
wobblybee

Hi Marina!

Now we've almost got your dad sorted, don't neglect looking after yourself. Best wishes xB

in reply to wobblybee

Thank you wobbly bee! I am very lucky I have an amazing husband and some very special friends. I have very few symptoms at the present so take it all one day at a time and live life to the full. The hardest thing I have to deal with is probably my Dad, sometimes hard to see where I will be in the future. I am so pleased I have joined this wonderful group! Cheers marina xx

LOVELY_1 profile image
LOVELY_1

Hi Marina

Is good to hear such apossive attitude from you and a good support network is very important.

How is your fathers speech? Are there any support groups for Ataxia in Oz?

Hi Bubbub

Dads speech not great. He gets very frustrated with people who won't give him the time to respond. Says they think he is stupid! It is sometimes hard on the phone to understand.

I haven't really looked for Ataxia support in Oz. the genetic specialist I went to in Sydney was a wonderful man. I have seen a local neurologist probably 3 times in as many years, he seriously didn't know anything about SCA6 and don't think was interested - wont be going to him again. I did ask him if there was any research in Oz that I could help with, i know he sent a letter to one of the hospitals, but again no response. I am very fortunate at the moment that I have no symptoms and am taking one day at a time. In fact going to see a baby polar bear today with my goddaughter - another day to cherish!

Have a good one yourself, M

wobblybee profile image
wobblybee

It's so heartening to see all this response! We really are here for one another, well done everybody! xB

Guyb profile image
Guyb

I got a joiner to make potting table that my wheelchair could go under and some plastic growing boxes on legs and started growing herbs and fruit there's supposed to be one herb that's good for the pain

You may also like...

Hobbies

balance problems I might want to think of a new hobby as tight rope walking might not be...

Hobbies

helps me with hand eye co-ordination. It has hjelped me keep my fine motor skills and has improved...

Any ideas please?

instead and has suggested I try and get a knee height support bar. A friend has very sweetly said...

Any advice on Employment Law please?

he has had reasonable adjustments!!!! He is all for the council so useless.Anyone have any ideas...

any advice for use of a kindle

for advice for a lady with ataxia who has now issues with her hands, losing her dexterity. She...