An MND sufferer newbie

[Maidinkent58]

Great to hear you're positive and getting on with things.

Re typing/PC use: have you had any contact with Speech & Language, OT, Assistive Technology, Environmental Control/Services about your difficulties using a keyboard? There are other ways to use keyboards which should be quicker than using one weak finger - I use eye gaze, for example.

Love Ellie.

Yes, I completed my voice banking shortly after diagnosis, & luckily my husband showed me my computer has a built in on screen keyboard specially for the disabled which is a godsend, so while I still can use this one finger all is good..........eye gaze later when necessary

[Maidinkent58]

Ohh I forgot to mention, I still have my speech too Ellie

[Maidinkent58]

Happy Tuesday fellow members, just an update on different solutions I have found, for my personal difficulties.

As using a normal keyboard on my iMac became more difficult my husband showed me my iMac has already an 'Accessible keyboard ' built in. It is on screen and is very easy to operate with my 'one remaining working finger ', & the predictive text is used all the time.

Drooping head has been a huge issue, due to muscles deteriorating in the neck, however, after much Internet surfing I have solved it. I bought these for trial and error...........& I can say they are both effective indoors and out, traveling in a WAV/car. They are for children traveling in a car, but comfortably fit an adult.

[matthew55]

Brilliant thanks as my neck is in constant pain. Aren't we the lucky ones! 😁x

[matthew55]

I just ordered a blue one 👍😁x

[jd58]

Welcome to our community forum

[Crell]

Hi maidinkent58, my wife is also a maid of Kent.
I was diagnosed (12 months after first symptoms) in March 2020 with c9orf72 familial ALS. I also had a spate of falls, exacerbated by the coinciding production of 25ltrs of cider! I now carry out a quick cost/benefit analysis: I can get upstairs after one whisky; can I manage it after two, three,..?
Thankfully I can still talk (too much!), walk with a stick and foot-up splint, and just about play my many guitars.
I keep repeating ad nauseam: this is not one disease, but several types of neurological degenerative diseases with different outcomes and rates of progression. My mother died aged 49, 5 years after diagnosis. I developed the disease aged 62 (the mean age of onset) and am progressing more slowly than my mother.

[Maidinkent58]

I do believe living with MND is about adapting to a very different way of life, finding what works, having a cheery frame of mind (when possible of course), I have had countless bad days when I feel hopeless and empty, but the support of my husband helps me immensely, & I continue to keep a journal (as I have been a writer all my life, I have documented every emotion & thought since the onset of changes in 2016. Living with MND is a monumental challenge, & I will stare adversity in the face............because I like a challenge!! I WILL say 'why me? '..........but I’ll also say 'TRY ME !!'