Best & Worst of Living With Ataxia
Whilst answering another post with one of issues I found most frustrating about Ataxia I thought why not make it a new post so people can say what they find most frustrating and what they feel they have gained, which they may not have done, had they not acquired Ataxia.
I'll start you off. My most frustrating aspects are the fact in my memory I can remember how to do things like leap off sofa or out of bed and set off running, so to speak, but can't physically do it without pulling something or landing in a heap on the floor.
Typing is another thing I miss as I was so proficient at it before and remember how to touch type but getting my finger to hit one right key first time takes as long as I could have typed a few words in before.
Speaking and signing too with it now affecting my arms and speech more. I used to be able to sign as fluently as I could speak, but now especially things like fingerspelling trying to point to correct finger with the other finger, I often miss or hit wrong one.
So using an interpreter to compensate for slow/difficult speech is getting just as frustrating, as you usually don't know which interpreter you will get until you get to the appointment and if its someone who doesn't know me, they have as much difficulty trying to work out what I'm signing as hearing people have trying to work out what I'm saying!
One of the biggest advantages have to be the inspirational people I have met online from having ataxia and searching for answers.
The computer skills I have acquired whilst researching assistive technology and the tips I have got off other people living with similar conditions for longer. My own problem solving skills have improved and I can now often work out my own solutions to how I could manage something, rather than waiting for OT to tell me what I need and whether they can provide me with it.
My latest challenge I set myself is creating a communication system for around £500 (under if possible) that can do same things as the big companies devices can, who charge like £5,000 upwards.
As people with acquired disabilities and language skills etc acquired before we became disabled, we don't often need the complex structure of some of those devices which include icon based vocabulary (so children who cant read yet can still communicate their needs).
I don't think I would have acquired this knowledge to undertake such a project had I not developed Ataxia myself and have a personal need for such a system.
What do other members find most frustrating about ataxia and what do you think you have gained from it that you may not have experienced, had you not developed it?
I'll start you off. My most frustrating aspects are the fact in my memory I can remember how to do things like leap off sofa or out of bed and set off running, so to speak, but can't physically do it without pulling something or landing in a heap on the floor.
Typing is another thing I miss as I was so proficient at it before and remember how to touch type but getting my finger to hit one right key first time takes as long as I could have typed a few words in before.
Speaking and signing too with it now affecting my arms and speech more. I used to be able to sign as fluently as I could speak, but now especially things like fingerspelling trying to point to correct finger with the other finger, I often miss or hit wrong one.
So using an interpreter to compensate for slow/difficult speech is getting just as frustrating, as you usually don't know which interpreter you will get until you get to the appointment and if its someone who doesn't know me, they have as much difficulty trying to work out what I'm signing as hearing people have trying to work out what I'm saying!
One of the biggest advantages have to be the inspirational people I have met online from having ataxia and searching for answers.
The computer skills I have acquired whilst researching assistive technology and the tips I have got off other people living with similar conditions for longer. My own problem solving skills have improved and I can now often work out my own solutions to how I could manage something, rather than waiting for OT to tell me what I need and whether they can provide me with it.
My latest challenge I set myself is creating a communication system for around £500 (under if possible) that can do same things as the big companies devices can, who charge like £5,000 upwards.
As people with acquired disabilities and language skills etc acquired before we became disabled, we don't often need the complex structure of some of those devices which include icon based vocabulary (so children who cant read yet can still communicate their needs).
I don't think I would have acquired this knowledge to undertake such a project had I not developed Ataxia myself and have a personal need for such a system.
What do other members find most frustrating about ataxia and what do you think you have gained from it that you may not have experienced, had you not developed it?
Views: 4
Replies to This Discussion
-
Permalink Reply by Carol Gow on -
Hello Kati
This really is a hard one. I have thought long and hard for several hours. What I really want is my life back, to be able to do all the things I did before CA took hold. I know that is not possible there is no going back. Make the most of it and move on.
So to the subject in hand. Many things annoy me but three really do frustrate me. Like you I think what I should do, bending, stretching, getting up from sitting etc, but suddenly (usually when it is too late) I realise that I cannot do it. I wake in the morning and just for a moment I forget and plan the day, then I try and get out of bed!! That brings me 'down to earth' with a bump!! (in more ways than one) Cognative powers can be a pain but the alternative doesn't bear thinking about.
Having to repeat myself because the person I am speaking to either does not hear me or cannot understand. This is particularly frustrating if it is a case of not hearing you the first time and you spoke perfectly well only to 'fluff' it the 2nd time around.
Typing is a pain, again like you I was proficient, a touch typist no less. Now I have to watch and concentrate really hard because at times the old fingers have a will of their own.Anything with a double letter in it and the world's your oyster!!
On the plus side my 'condition' has made me strong. If I cannot do something the way I have always done it I look for alternative ways. I am trying to put what talents I have to other uses. I think the most important thing is that I have come across, with the help of this site and others, some inspirational people. I have made some very good friends, people I would never have known and I am grateful for that.
Regards
Carol
-
Permalink Reply by Lit Smith on -
My thoughts are very similar.
I just get incredibly frustrated when I find out that I cannot do something and hate having to ask for help.
When I found out that I had inherited ataxia, I did an art course and discovered my love for clay. My ceramics is now my main therapy! I have also learnt the Waltz and am trying the Foxtrot .. scary but great fun!
Love Lit
-
Permalink Reply by William Phillips on -
My Ataxia has been very slow in progressing.There are a number of things I can't do that I used to take for granted, walking, running, cycling (I was a keen cyclist) and living a more social life, so I obviously miss all that plus other more minor things. I used to be a bit of a D-I-Y type of person (Decorating / Building and Physical / Mechanical things in general). Now I have to get help to decorate etc and the feeling of self satisfaction is lost when someone else does a job. Can't honestly think of any plus side to having Ataxia. I just get on with my life to the best of my current abilities. It's a bit scary wondering what the future holds in store due to the progressive nature of my Ataxia but I refrain from thinking in that way and try to live for today. After all who knows what tomorrow may bring. One thing I can be glad of, which is nothing to do with Ataxia, is that I have an active / inteligent mind. Best wishes to all. BILL XX
-
Permalink Reply by Kati on -
Can't think of a plus side? what about making friends with us lot! You might not have met Carol if you hadn't both met on here?
-
Permalink Reply by William Phillips on
-
Sorry Kati, your right, but I'm afraid I may have taken that for granted. Put it down to the old excuse "Senior Moment"
Re one of your previous posts asking "What is normal" I think it's living your life to the best of your abilities whatever your abilities are. xx BILL xx
Kati said:Can't think of a plus side? what about making friends with us lot! You might not have met Carol if you hadn't both met on here?
-
Permalink Reply by Carol Gow on
-
Hello Bill
I agree with Kati, that was a wonderful response.
Time we met up again, I fancy some fish and chips!!
Love to you and big hug for Joe
Look after yourself.
Carol
William Phillips said:Sorry Kati, your right, but I'm afraid I may have taken that for granted. Put it down to the old excuse "Senior Moment"
Re one of your previous posts asking "What is normal" I think it's living your life to the best of your abilities whatever your abilities are. xx BILL xx
Kati said:Can't think of a plus side? what about making friends with us lot! You might not have met Carol if you hadn't both met on here?
-
Permalink Reply by William Phillips on
-
Thanks Kati & Carol.
Took me quite a while to think up that definition / response. When I first read Kati's post I thought of all sorts of definitions for 'normal' but they realy all depended on a persons point of view and a book could be filled on the subject. For instance someones idea of 'normal' may be working 9 to 5 - 5 days a week (Not mine) or lazing about all day doing nothing (Not mine). Able bodied - 'Normal? Disabled - Normal? and the list goes on. One thing I think isn't normal is to mope about worrying about our particular conditions.- Take things easy but take 'em. Bill xx
-
Permalink Reply by Marie Turner on -
Hi Kati
I identify with many of your frustrations.I get rfrustrated trying to type. My fingers used to be fast. I was a classical pianist but now everything is so clumsy and slow. When I type, like you my fingers hit several keys at once and it ends up like gobbldygook.I do write to a fellow ataxian and we don't edit anything and we can still understand. It saves so much time. I find I have to get up slowly and point myself in the direction I wish to go as any fast movement of the head leaves me disorientated and that is when I fall over. I don't like any uneven surface and get cross when faced with stepps in public places without a hand rail. However my condition is fairly mild and i do feel for all of you who have got it worse.
I have learnt over the years to treasure each day. There are so nmany trhings I ca n do to help others. It gives me a real buzz and purpose instead of feeling trapped ina job I cojuld'nt keep up with.I am so grateful it is my mobility which has been affected and not my thinking and emotions.Ataxia has slowed me down but that is a good thing. I was all over the place mentally and emotionally. I also love my blue badge.What a help! Please excuse the typos. It's getting late.
Marie
-
Permalink Reply by Kati on
-
Hi
I found I can type better using bottom of little finger and hand is in relaxed fist so don't have as much tension in hands trying to keep index fingers outstretched and steady enough to hit right key. for short bits of typing I can steady one arm by putting weight of other arm on it as I do if i just need to sign something. If I'm doing for longer periods like art or typing blogs I also use weighted wristbands so can use both hands as effectively as possible.
I used to tense all fingers to try typing and moving arm up and down keyboard but this gets very painful quickly and had to use one hand one day and other next day to give each hand a day off, from the pain.
I also now use word prediction program that allows me to create my own abbreviations and panels of pre-stored sentences which is great for chatting, letter writing & form filling and reduces amount of keystrokes you need to do.
For keyboards with keys that are closer together you can get typing sticks I think carol mentioned having one or maybe come as pair I'm not sure? You can find all past posts on typing help by putting in search box typing or word prediction, large keys keyboards etc
Please Like Us On Facebook and Follow Ben's Friends on Tumblr and Twitter
To Support LivingwithAtaxia.org, Click an Ad. Or Two.
Powered by Bensfriends.org
This community is part of the Ben's Friends network of patient communities. Learn more at bensfriends.org.
Patient Communities
Acute Disseminated Encephalomyelitis (ADEM)
ADHD/ADD
Adrenoleukodystrophy (ALD)
Arteriovenous Malformation (AVM)
Ataxia (International)
Ataxia (U.S.A.)
Atrial Septal Defect
Autism
Brain Aneurysms
Charcot Marie Tooth (CMT)
Chiari Malformation
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Crohn's Disease
Disabilities
Eagle Syndrome
Erythromelalgia
Fabry
Fibromyalgia
Glossopharyngeal Neuralgia(GPN)
Hepatitis C
Lupus
Multiple Myeloma
Myositis
Primary Sclerosing Cholangitis (PSC)
Psoriatic Arthritis (PsA)
Synovial Sarcoma
Trigeminal Neuralgia (TN)
Von Willebrand's Disease (VWD)
Other Rare Diseases
© 2012 Created by Ben Munoz.
