what does everyone do day to day? do u work? stu... - Ataxia UK
what does everyone do day to day? do u work? study? family? etc. is there anything you'd like to do but think you cant?
Hi Nikki!
I spend far too long sitting at my laptop, posting on Ataxia sites! This is mainly on
the US sites, because for some reason this one just isn't active at the moment.
What would I like to do but think I can't? Loads!!
Is this question in relation to the course you're taking?
The biggest irritation I suppose, is having a lot of difficulty maintaining the garden.
I hate dusting and housework, so the fact that this is out of control doesn't really
phase me. But, we have a lovely garden, it was a major factor in the decision
to buy this house and I looked forward to maintaining it because I didn't work.
I would much rather weed, than dust. For me it's theraputic!
best regards
Beryl
I love cooking, gardening, reading , sudoku, brain training on DS, watching TV & of course my laptop. My husband helps a great deal, chopping, getting things etc., there are loads I'de luv to do. My favourite is maintaining garden full of flowers & fruit trees, much like Beryl.
Keep well Nikki
All the best
Berejena
o cool berejena you sound very busy!!! i work as a teaching assistant at an infants school and im studying alongside it. i have an assistance dog who i do regular training with. i get annoyed when people r like "i cant do that i have ataxia" so i thought id find out what it is that people do
hey wobblybee sorry i totally missed your reply, yea this site kinda goes quiet for a bit then gets lively again. nah its not connected to my course just me being nosey really. yea housework dosnt overly thrill me, i can do the basics but cant say i look forward to it. we dont really have a pretty garden as we have 2 labradors but i like throwing their toys for them outside. i want to get them a paddling pool but mum said no. i find shopping theraputic is that the same?
Nikki, I'm also nosey, keep it up!
We have a lake in our garden, your dogs would love that, although I wouldnt like
to clean them off afterwards! One day I was chasing a cat away from the ducks/
moorhens and frightened it, making it fall in the water. I can't swim but felt like
jumping in anyway to rescue it. I was amazed to see it swim to safety despite
the fact it was longhaired, which weighed it down.
Maybe you could rig up a sprinkler system the dogs would enjoy.
I used to love shopping, I could browse for England!
It's not quite the same now, ah! But I could spend hours just browsing, as you
say very theraputic.
We live quite near the MetroCentre at Gateshead, I prefer going there rather
than into Newcastle. The fact that once you're inside the centre you know you
don't have to constantly be aware of different floor levels makes all the difference.
It's a very disabled friendly layout.
Like berejena I like suduko. I used to read before dropping off to sleep but now
I do suduko. You would think it would activate the brain too much for sleep but
it clears my head, somehow I sleep better.
I wish I was more active, out and about more, mixing with people, now that I've
got my head around the condition.
bye for now!
Beryl
Thumbs up to shopping centres. Perfect if you're in a wheelchair, everything you're likely to need, under one roof. If you're lucky you might be able to hire an electric scooter.
Listening to the radio at night, helps me.
hey wobbleybee, i feel the same about shopping at basingstoke near me its like on 2 floor but its curved so u can walk all the way round or get a lift but your not stuck to waiting around forever for a lift like many centres our way. ill take the dogs round country parks in the summer then they can swim all they want. i havent got the grasp of soduku but mum does it and says its good, i like reading though. i have to be careful about overstretching myself cos i volunteer with ataxia.uk do mentoring for the john radcliffe do volunteering for dogs for the disabled and work and study lol and some point i sleep!
have u tried a day centre to meet new people?
Hi Nikki
You put me to shame all this stuff you do!
No, I haven't tried a day centre, it's never
crossed my mind.
I'm typing this with my daughter's 3mth Bengal
kitten asleep on my knee. Our cat growled,
hissed and went out in disgust. The kitten is
staying here for his holidays shortly, I suspect
I'll be kept busy!
i think pets r fantastic for everyone especially those with a disability. they force a routine on us, you have to get up to let them out and feed them regardless of how your feeling. plus they keep coming back even if your not feeling great. day centres can be a good option but look more at a disabled day centre [ i dont no the pc word for that] rather than an old people day centre cos there very different, disabled day centree is focused on what u can do, learning new skills, be social new experiences etc where as old people day centres are more like a way to get out the house
Hi, there's absolutely loads i'd love to do, that's such a big question. I live in France and teach English to groups of adults - only couple of hours per week as now the students come to me as driving has become dangerous. I really enjoy this work. I do a little housework and enjoy baking bread. I used to look after the garden, vegetable patch and planting areas - we have a large garden. Now that has become too much for me. I still do the pots of flowers on the patio. I find that when i'm doing something active my head starts to spin and then i need to sit down. Then the electric current feeling in my body increases. At the moment i'm confused and not sure what i should be doing - should i force myself or rest more???
Before i liked walking in the countryside and mountains, we have renovated our house and i really enjoyed doing that, i like to party ( and still do but i pay the price heavily afterwards).
Hi
I use to enjoy walking around where I live (countryside) but since I have become more unsteady on my legs I don't do that any more! in fact I have given up most things< theatre cinema going for meals with friends I have become a recluse. something doesn't seem quite right when my parents seem more active then me, although I am still currently in work, was always a very chatty person< but get embarrased about my slurred s finding it very difficultpeech,not long been diagnosed still
i can relate i'm 26 going on 60! i dont no if ur at wheelchair stage but theres some wikid chairs for the countryside? there all terrain chairs - not cheap but really good. i walk my dogs in my chair and that goes most places. i try going everywhere the chair dosnt always agree. i gave up alot when i was first diagnosed but im getting back gradually. my work is helping me get back my confidence and get back to normality, we have quite a few social events, usually involving a pub which i try to go to them all and every1 is willing to help me. u kind of have to get your head round needing help which isnt easy. speech wise i find sarcasm helps put other people at ease and shows ur not bother by your speech
wibblywobbly i know what u mean when i was walking i often became dizzy, a few times i blacked oiut when i fell. which is why i now use a wheelchair cos the truth of it is i cant fall in a wheelchair and it got dangerous cos i was at home on my own alot and people couldnt keep coming home to pick me up, and i broke quite a few bones so a wheelchair helps alround. your job sounds fun it keeps you mentally active. i was no good at other languages at school, after 10 years holidaying in france i can do my alphabet, days of the week, count to 10 and say 'i dont understand im english'
i had to give up driving cos my reactions were to slow for the roads. i like cooking, our kitchen isnt adapted so im a bit limited but i try. personally i say force yourself see how far your body can cope unless u put urself or others in danger?
I was diagnosed 10 years ago with my ataxia. I retired from my job as a social worker 7 years ago due to ataxia. I've used a cane for about 3 years. I miss my job (helping people) and would like to volunteer in that capacity. Helping others would take my mind off myself and my ataxia. I do not want to be "locked in" to a schedule, as I have good and not so good days physically with this. I enjoy making greeting cards, drawing, painting on different mediums with acrylics, reading, cooking and doing exercises for strength and balance and being on my laptop, even though it takes me three times longer do do anything. I really enjoy my seeing my family and friends, especially my two little grandchildren! Now that the weather is warmer, my husband and I have taken several walks, although I must pace myself. Before ataxia, I was very active physically and liked sports, as I downhill and cross-country skied, snow-shoed, played tennis, did aerobics, swam and dived. I miss all those things VERY much, although I would like to try swimming again. Just being able to walk or go up and down stairs without falling is a huge challenge these days...,ha!
hey february i know what you mean about good an bad days i have that to. i have an arrangement at work so im there voluntary so dont get a wage but do exactly the same as a paid member of staff doing the same role, so if i dont physically feel well i dont go in which considering im going to be having surgery soon makes it easier for me that i dont feel guilty for letting people down. work dosnt give me a wage as such but they pay my training etc. it work for me cos im treated as an equal member of staff but without the pressure. but if i tell people i volunteer at an infants school they seem to think i sit on the carpet reading a book and i do so much more than that. have you considered volunteering in the social work field? so your not 'locked in' but your still doing work at helping. im lucky i wasnt really into sports before i was diagnosed but have done swimming recently with the aid of a woggle, i cant swim lol. you should try swimming its good physio cos its non weight bearing. yea stairs are a huge challenge for me to - i can handle a class of 30 7yr olds but stairs beat me lol. i make hand made greeting cards to all crafts are meant to be goood for your fine motor skills rather than boring physio exercises
What do I do all day? Not a lot really. When I`m on my computer - typing - there is a small battle going on between my brain and my fingers. My fingers try to trick the brain by hitting the wrong keys which makes me have to concentrate even harder and type even slower 
I do like watching sport on SKY TV (except Gulf)
The thing is, my memory is slowly getting a bit worse - I`m actually waiting for a letter from the hospital to go in for some kind of tests, my Dr did say what they were but..............I forgot
So, my legs are redundant, my fingers are in a union dispute with my brain, my memory is going, and the weather is just awful.
What a wonderful world.
Have a nice day everyone, and remember a smile costs nothing...................
well i love your honesty my memory's bad but i blame my meds for that. ataxia is an endless battle between some part of one bit of the body and another bit. i swear each bit is working against another not working together, my brains like "i can transfer from there to there" then halfway through it says "no u cant u will fall" and im like make up your mind! but i do agree keep smiling regardless!
A constant battle between your brain saying "I can do this, why all the fuss" and your body sits in its wheelchair and says"don't be silly"
But sometimes, your body will say "there's only one way to find out. Give me a hand!"
The trick is, knowing when to do what. I've been in wheelchair for 20 yrs and, I no closer to knowing!
I enjoy the countryside from my scooter.I do miss walking and I do not get any exercise but I went much further last year.The dog gets lots of exercise but my hands do get cold this year.I too have a battle as my brain thinks it can still do things but my body gets stuck or wobbles.The going out on my scooter is a recent thing and a new hobby.It is instead of the walking.I like your bit about the wheelchair Nikki as before that I was feeling quite negative about it all.
I am in constant fear of falling and am quite unsteady with the walker now.
I realise there are pros about having a wheelchair but it might reduce my fear of losing my balance and it might lead to greater independence.
hey i found when i started using my chair it allowed me to be a lot more independent - along with my assistance dog. although i continually feel in fear of falling especially during transfering. im due to back surgery at the end of the year and im really worried cos previous hospital stays have led to then taking my chair away and my buzzer and when i manage to get someones attention they treated my like a right diza when i asked for help for things, like passing my drink. im scared of them making me transfer to early and not the correct help/support to enable me to transfer 
Saturday was a wasted day from the word go. I forced myself out to do the
weekly shop with my husband, reasoning once I got out and active things
might pick up. Brain fog and apathy stayed with me all day.
Sunday was a new lease of life. Initally lethargic till mid morning, then
suddenly a spurt of energy kicked in and I enjoyed a few hours tottering
around the garden, even weeding (at a snails pace)!
My brain and body are in constant battle for domination, that's what it
seems anyway. But, actually I think the brain is being two-faced!
i think the overall rule is that no matter how long it takes if u enjoy doing it still do it
I`ve been looking at the different types of mobility scooters - and the width of my front door for access. I`d also most probably have to have a small ramp built as I have a very small step at the door. I do have a wheelchair at this moment in time - manual - but I do not go far because my arms soon get tired and ache, the garden and sometimes a little way down the path from the house before I return.
Maybe a motorised mobility scooter would open a new world for me - I like the idea of solid wheels so no punctures
I think I would have to sit down and talk with my GP first - about this concern on my memory forgetting things etc.
How long does a recharge take and does it eat the electric on recharge?
It`s lovely up here in the North East, sun is out, blue sky, white clouds, really nice
Hope it is nice where you are
yea surprisingly we have sun, im pushing for a paddling pool for the dogs, so far its a no go with my parents. i found the same issue with my manual i did have good speed other so i got annoyed. i then got a pink mobility scooter, a little one, i found the speed slow and it didnt handle kurbs well especially dropped kurbs - which r so not dropped, it just stopped when it hit the kerb. i also found the turning circle a nightmare cos its massive so you need alot of space to turn, i got stuck in many lifts!!! and its a nightmare going round shops due to its size.but thats just my experience i know of others who have them and love them. with mine cos i used my manual in the house and scooter outside i just plugged it in when i got in and unplugged it again when i wanted to use it again so i cant tell you an exact time. i dont think it greatly affected the electric my parents never mentioned it.
personnally i have power wheels added onto my manual chair so they use your current chair and turn it power, bit pricey though, its called alber efix. the battery lasts about 2 days depending what your doing and i just charge it over night
hope that helps
Hi John-H!
Did you know that at the MetroCentre you can hire a small motorised mobility
scooter that gets you easily around the confines of shops there?
I was in Lakeland the other week, wobbling round on my walking stick, when
a very happy lady came into the shop on a very cute motorised mobility scooter.
It looked really nifty, she thought it was great and said it wasn't at all expensive
to hire.
It's lovely here today, I hope you get out and about!
The taxi firm I use to visit my Dr`s etc do have special vehicles fitted for wheelchairs but, they are only available between 9.15am to 1200 lunchtime, and then from 4.15pm onwards. So I have to arrange Dr`s visits to their times and not the surgery - which upsets the doctors receptionists
The Metrocentre is about a 15/20 minute walk from my house, so an electric scooter would cover the distance there and back no problem.
The only problem I have is my failing memory - I can just picture myself going onto the station and probably catching the train to Wylam or Prudhoe or blimey even Carlisle with everyone out looking for me - it would be a laugh
It`s been another glorious day, everyone passing the house in their T-shirts and shorts, hope it lasts longer this time.
hi you may want to check they will take a scooter because the taxi's round mine wont take a scooter but will take a powerchair, something to do with the length of the scooter because you need to be able to turn so u have your back against the seperating glass if that makes sense? we have euro taxi's and black cabs round here which i use for work. you may want to contact your local council cos they will know all taxi firms who have accessible vehicles. you shouldnt have to arrange round the taxi firm they should be available whenever thats their job. plus getting a dr's appointment round your times will be very difficult to arrange and guarantee.
dont blame your memory just do it for fun i would.
we took the dogs for a walk in the sunshine today was fun and empty which i love cos then i can just let them run otherwise you have to keep putting the leads on or holding the colors - which is not easy to grab in my chair! im working tomorrow so hope its not to hot, nothing like a hot stuffy classroom to make life unbearable
hi nikki,
I work 3 days a week and am fairly independent using a scooter outdoors. Im married but still see my parents everyday. Don't get me wrong, I love them and their a great support, but I'm 37 and don't want to be relying on them forever. Its hard to do my own thing on my days at home, as my parents want to take me out to keep me away from depression. I can go into town and use the buses on my scooter, but I just feel I can't tell my paeents I want to go alone abit more.
hey, thats good your working 3 days a week thats quite alot if you look at a working week is 5 days so your doing over half. plus your contributing to society (you probably get told that alot, so do i) i hope to return to 3 days after my surgery untill then my hands are tied. what do you do?
i feel the same about not being to reliant because my parents have allways worked full time ive always been on my own in tthe day so i had to find ways around stuff and it wasnt until my ataxia progressed and my falls got worse where i broke my rib and wrist the council began to recognise us and first of all i was sent to be an inpatient at a multidisciplinary team hospital - which i hated as i was atleast 60 years younger than everyone else - this was as my home was thought to be unsafe. they then built me an annexe on the back of the house, they applied for direct payments for me, which i know use to hire 2 carers/pa's 4 days a week who r my age so we go like clothes shopping, dog walking, pub, cinema etcc. at weekends i potter about doing whatever needs to be done and my parents go out and do whatever.
ive got severe depression but after many fights with doctors and got it recognised and medicated - i know some people see it as a weakness but ive got it and have to deal with it.
i know i keep saying it sorry, have u looked into assistance dogs? mine changed my life, he means i can do so much more on my own, he comes to work with me, they give u confidence and reasurance that your safe. if your going to the conferance next week im talking there
If I was on my own I'd seriously look into having a dog, but I'd be worried about how I'd take it for walks and manage its poop. Where did you find yr pa's? Do they do housework stuff as well as socialise with you?
I work at a special needs college as a classroom assistant, luckily I've got a helpful volunteer driver who sorts my chair out for me (it stays there), but my mum still comes to see me in and out the house. Maybe thats something a pa could do in the future? Can you give me some contacts for the Nottingham area? I've thought about contacting social services to see if they'd help or maybe a mentor? I feel like Im going behind my parents backs, and that Im tredding on their toes, but their retired, it should be their time shouldn't it?
When is your surgery? Hope it goeswell?
I cant get to the conference nxt week, but I hope your talk goes ok.
hi these were my concerns also but i look after my dog on my own, theres ways around things for walking you dont have to go alone? maybe u could go with your parents when your out with them? the benefit is you can literally take the dog everywhere with you. the poo side you can include it in your carer/pa contract so they pick up at home or when your out or you can get long arm poop scoop for at home? there is otherways the charity teach you. im not forcing the dog on you just it worked for me. my pa/carer is my sister and im part of a care agency and specified i wanted people around my age now ive got a girl my age who helps me, i prefer agencies cos u get backup if the person is ill where as hiring a private pa your left with nothing if their ill and sometimes u have to pay sick pay too. yea your pa can get u ready for work and make sure your safely in the car before they go. u tell them what u want them to do. mine do domestic work and my dog helps by emptying the washing machine and getting my clothes out from my cuboard for me to wear. i dont have any contacts for nottingham but google care quality commission, you can search care agencies covering your area from your postcode, care quality commission aare the governing body but social services can help to ask them to explain direct payments to u cos it varies between councils.
your not going behind their back just trying to be more independent which they should want for you. my surgery is meant to be september/october ive been waiting 2 years so im excited to be without pain but the recovery will be hell
thankyou did u go tostansted? i did the same talk there
thanks, will google care comission and email social services. I can do most personal care but maybe someone at home while I have a bath is a good idea (Ive got no house adaptions, I manage and have found ways of doing things, not always dignified or safe, but I get on with it!) I like my hols and have 3/4 a year, I wouldn't want to keep putting the dog in kennels, do you go on hols? My hubby puts the washing out, so I don't really know how a dog could help, apart from companionship. I dont tend to go to the comnferences, maybe I should, but transports a problem as well as fitting it in, maybe ataxia nottingham support may have some answers. Do yoi know where they are?
yea that what i do, they clean the kitchen while i shower, close enough to hear if i fall but not in the shower with me. yea im an lsa too so i love the holidays to. yea i went away ast year with my pa but this year im on a cruise with my parents and a minibreak with my pa to see one of the other ataxia girls. oh he doesnt put it out he pulls it out of the machine so i dont bend, go on dogsforthedisabled.org that shows diff tasks the dogs do. u can take the dog anywhere in the uk and they supply a family to have the dog if you go abroad, my other sister is having mine when i do the ccruise she has her own dog and mine and hers get on well. tthe conference next year is in manchester
I'm off on a cruise too, there fantastic! Do you know what day the conference will be held? My hubby may drive there if we can get time off.
Hi
Hope you don't mind me interrupting your conversation with Nikki. The annual conference is on Saturday Oct 5th at the Raddison hotel at Manchester Airport. I will be arranging a get together for anyone and everyone who uses HealthUnlocked on the Friday evening so we can all meet each other! Booking opens soon and there will be further details in the next edition of the Ataxian.
Best Wishes
Harriet
hi harry thats fine i wasnt sure where it is in manchester - i cant go cos of surgery planned for then
That's a shame Nikki. Good Luck with the surgery. I will see you tomorrow in Basingstoke.
yea mums just pointed out i have no direction or agenda so had to do a quick print. is lunch is included? i couldnt see that on the site
Lunch is included. If there is anything else you need to know, just ask.
Thanks, may be possible to get. Where will you meet on Fri?
Ok, I'll see what hubby says. R many staying overnight? As we'd prob book an accessible rm if diid go
is this for 2013 or 2014?
