Learn by documenttion

I have learned that in my seven years of having Ataxia that it was greatly appreciated by my Neurologist to know that I journal, research, and workout as much as I can, It helped me, my doctors, my PT people and all that reads my writings. I cannot lie about what’s happening to me if every one else is saying the same things. Now if I notate specific things I do due to research, approval form the doctors, and show where I got my information. I know you can help the world to find a cure or maybe slow it down quicker then normal. People, this is our future we need to notate things we do. KM, TM! Ross

:slightly_smiling_face: At one time, I could simply delve back in my mind and recall exactly what and when my first symptoms were. Appointments didn’t present as a problem, I felt confident I’d be able to converse accurately. Now, it’s a different story, it can be a real struggle :smirk: That’s ataxia for you :smirk:
I have an upcoming appointment, with a new Neurologist. It’s time I put pen to paper in preparation :wink: xB

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Hi all. When u can’t be understood p

B😏 It must be especially frustrating if speech problems get in the way, specifically at appointments. It’s all very well preparing questions in advance, and having them written down to give to the Neurologist.

But, if the Neurologist has something new to discuss with you, and conversation is difficult… Hopefully the doctor is patient, anticipates the difficulty and allows time to make it as easy as possible.

I volunteer as Ataxia Support at my local Ataxia Centre. I’ve met people with severe speech difficulties, and realise how frustrating, and exhausting it must be for them. It takes patience on both sides but it’s often worth it :slightly_smiling_face: xB

Computerized diary programs may be helpful too as many of us no longer possess good penmanship skills. Writing/printing is no longer one of my strong abilities. It is truly frustrating to try to remember each detail, I too was able to recall easily, not so much now. And professionals always seem to find the darnedest solutions in the details. Things the average person may not think of. Therefore, it is very important to keep good notes.

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So often, people equate problems with speech with stupidity. And, nothing is further from the truth.

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:smirk: I’ve been embarrassed myself when either my voice has failed to be heard, or I’ve been misunderstood because I used a ‘substitute’ word when the one I actually wanted failed to pop into my head :roll_eyes: Even with the best preparation, sometimes you just have to ‘think on your feet’ and plough on :wink: xB

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I find it much easier now to communicate via “computer typed” or text messages. My GF always comments how I use much more verbose and complex wording when typing a message vs. talking, I always explain this is because before my speech became impaired, I used to talk this way. Public speaking and presenting was my career. Now I have learned to use much simpler language. It requires a lot of practice and effort though. I still think one word and use another to avoid stumbling while talking.

:slightly_smiling_face: I ‘think best’ and find language skills are far better when sending emails etc. ‘On the spot conversations’ can be hit and miss :joy: xB

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My problem is that my typing finger gets tired! I am also really slow-probably all the typos don’t help.

I use an iPad, with a stylus. I’m forever puncturing the stylus’s :grimacing: :joy: There is a keyboard I can attach, it would probably be more cost effective if I just persevered with that :wink: xB

I’m using a wireless keyboard at the moment, I find it extremely un-responsive to some of my keystrokes.:angry: It seems cumbersome. I’ve changed the batteries, reconnected it, I’ve considered that maybe it’s just the operator!:upside_down_face: I have a heck of a time using my phone to text or message of any sort, my fingers just don’t seem to hit the keys.:rage: Even still, my messages are far more readable than hand writing in cursive or printing.:relieved: A good keyboard brand suggestion would be appreciated.

:smirk: I empathise, I have arthritis, my fingers seem to have a mind of their own. Previously I used a fairly large laptop (because of eye problems) then found an iPad and stylus were more practical for me. I have a Logitech wireless keyboard that’s compatible with the iPad. There didn’t seem any point in spending unnecessarily. But, the keyboard is a ‘plastic’ finish, my fingers are inclined to slide off the keys. Of course it probably would help if I trimmed my nails :wink: I think a soft rubber finish would suit me better. Texting on my iPhone is frustrating, hitting the right keys can be a challenge :face_with_raised_eyebrow: I would never ever use it for anything other than calls, or short texts. With the wealth of technical bits and bobs available now, there’s bound to be something that fits the bill perfectly. We just need to persevere with current appliances in order to find it :wink: xB

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Hi Beryl

I did know the email went through I thought I wld continue next day bcos was looking on my handphone & hard to reply. Now I am using my laptop but it not easy keying the words now.

That why u notice that I did complete my sentence

But u know what I was sayinge

Thanks anyway for understanding. Earlier walking problem - not steady. now worst even with frame & I must nd use tube & bag for urine. bowel issues and body shake if I sit forward on wheelchair or when eating at dining table. now I eat at mmy armchair. Food must be cut up so easy to scoop n I have to hold bowl up to my chest. even at home is difficul

t to be understood even if neoxt to me & must use speech apps its slower n if don’t save may get erase or when typing wrong words comes out.

Its been 4.5 years now since I been hhome bound. But for last 2 yrs got a helper ( But hard for anyone to understand this sickness) as now cant be alone as also recommended by therapist. But its so frustrating.




om: Beryl_Park ■■■■att


Hi Jacob :blush: Yes, I can see where you left off :wink: As you say, this whole thing is frustrating to say the least :roll_eyes: It’s always good to hear from people who’ve found ways of dealing with specific problems, it gives the rest of us hope :slightly_smiling_face: Be good to yourself Jacob :blush: xB

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