Another recent MND diagnosis

[Geek Girl]

I was diagnosed with MND in the last week in January. It was no big surprise cos I Googled my symptoms and found out that there was a clear description to this disease.
I’m 76 years old and living on my own (now a widow). I have no family but I have many friends and neighbours who help me.
I totter around at home on Zimmer frames and my friend Stuart comes in twice a day, with his dogs, and does the jobs I can’t do. His partner Teresa also comes in and helps. I bribe them with coffee and chocolate biscuits!
I am a computer programmer (since 1964) and have been doing voluntary work for the Friends of my local hospital. I’ve done their website and the database of all the Friends. I’ve enjoyed doing this but now I’ve had to give it up cos my eyesight is affected and my left hand can’t type anymore.
I’m isolating like the rest of you and hoping that the covid-19 will go away soon. Then I can go out in my wheelchair! Wow.
Thanks for this website. I’m learning a lot.

[Doug Carpenter]

Welcome ma’am!

Welcome to this fantastic group nobody wants to join.

Here you’ll find huge amounts of information, inspiration and empathy.

It’s great to know that you’ve got such good support from friends and neighbours. Presumably, through your MND clinic, you have OTs, physios and so on who you can call on.

Programming since 1964, eh. Wow! You’ll have seen some changes. Which languages by the way?

Hugs

Doug

[Ellie]

Hi GG and welcome to the Forum nobody wants to join...

Sorry to hear of your diagnosis but I like your spirit!

Hope Stuart and Teresa are doing all possible to protect themselves and you from Covid-19.

Such a shame your eyesight is hampering you - have you been in contact with anyone re making it easier for you to use a PC? My arms/hands don't work, so I use an eye tracker which gives me full PC access (thankfully!)

Stay safe.

Love Ellie.

[Lynne K]

Hi GG, welcome. It’s great that you have friends coming in to help. I too hope that Covid 19 gets sorted so that we can all go out in our wheelchairs. I’d write more but my meal is ready. I prepared it so it’s late as I take so long. Chat soon, Lynne x

[Fru]

Hello GG and welcome to the club that nobody wants to be a member of
You will get loads of support here because I did!!
Best wishes Joy

[Geek Girl]

Hi Doug,
Thanks for this message. The 1st computer language I used was RPG. And then Fortran, Algol, Cobol, Basic, and now C#, psp, VBA.
I’m so grateful to my friends who really help me. And I’m learning a lot from this forum.
Hugs to you too!
gg.

[Geek Girl]

Hello Ellie,
Stu & Teresa are free from the virus. We all avoid meeting people in the lockdown.
The problem with my eyesight is that I can see if I look down but looking up my eyelids close. I’m getting a neck brace which may help.
Thanks for your good wishes,
gg.
xx

[Geek Girl]

Hi Lynne,
Thanks for your message. I was interested in your cooking. I can’t now cook so I get meals for 1 from Waitrose. I telephone them and they deliver them swiftly. They’re good quality and easy to heat up.
Tonight it’s Beef Lasagne! Yum yum...
gg.
xx

[Geek Girl]

Hi Joy,
Thanks for this. I’m really glad I joined this forum cos I’m already getting great messages.
Love,
gg.
x

[Doug Carpenter]

Hi GG

Gosh, that’s quite a vocabulary!

Don’t ya just miss compilers and nested Do-loops!

Seriously though, I think we all benefit enormously from the opportunities modern computing provides – not least this forum. One thing I could mention you might like to think about, not that it sounds in any way urgent, is voice banking.

It’s a sort of insurance against sounding like Stephen Hawking if one’s voice does fail. The system currently favoured by the MNDA is Acapela; they may even help with the cost if asked. Basically, you speak 350 short sentences – takes a few hours but you can do it stages – which are converted to a voice file that you can download and use with any text to speech app like Predicatable.

The general advice is: do it while your voice is still normal. Several members here have done so, using either Acapela or the alternative ModelTalker. I banked my voice several months ago and can see no sign of needing it yet.

Perhaps talk to your Speech and Language Therapist about it.

In the meantime, stay safe and cheerful!

Doug x

[Deb]

Hello GG and a warm welcome to the forum from me,

I am so sorry for your diagnosis but glad you have found our forum. It's a good place for practical advice on living with MND and emotional support too. Theres also humour and the occasional rant!

You sound like a really positive person and it's great you have friends to help you. I think we are all looking forward to being out in our wheelchairs when this is over. I can't wait for hugs with my family and friends!

Take Care ,
Love Debbie x

[miranda]

Welcome GG. From being a speedy touch typist, I now use one finger of one hand but it means I can still communicate using a text to speech app on my iPad. Like you, I’m a fan of ready meals from Waitrose. My husband has had to learn to do the washing,cleaning and gardening but is the first to admit that cooking will never be his forte. Do not hesitate to ask questions - someone on the forum will be able to answer or point you in the direction of advice.