MND

[WrenChasen]

Truly, there are times when there are no words (other than the excellent links posted above) and only a hug will do, so...

(((Paul)))

[csearle]

Just read this. So very sorry to hear of your plight. MND took my dad in 94. I think a link was established between mercury poisoning and MND. I recall dad used to mildly mock health-and-safety and cited his pouring mercury from palm to palm in school as an example of things we couldn't do anymore. He worked as an industrial chemist. I rather suspect that his job might have been the cause. He too struggled to lift his arms up. I remember shaving him and losing composure.

I hope you have quite a few years left to enjoy family, friends and Fools.

Chris

[Mike4]

Far canal, I've only just read this. What a shyte turn of events pje.

Have a manhug. (((((((pje16)))))))

[staffordian]

I can't begin to imagine how pje16 or anyone diagnosed with MND copes with the news then lives with the diagnosis, and the last thing I want to do is speak for him, but whilst I can see CK's point, I would see the odd beacon of hope or good news story as something to glad of.

Regardless of the level of support one has, surely the message is also the importance of trying to remain positive. Not easy, I suggest, but perhaps more important than medics give credit for.

Whilst I'm commenting, can I finally say how affected I was when I read the first post in this thread. I haven't commented previously as words seem so empty, but regardless pje16, you have my very best wishes and hopes that it develops slowly.

Rob

[Clitheroekid]

... whilst I can see CK's point ...

It would seem that you're now the only one who can. I assume my post was removed, though I've not received any message to that effect. My apologies if it caused offence, it certainly wasn't meant to.

[monabri]

... whilst I can see CK's point ...

It would seem that you're now the only one who can. I assume my post was removed, though I've not received any message to that effect. My apologies if it caused offence, it certainly wasn't meant to.

I posted an email and CK replied. I intended no offence ( completely the opposite) so rather than risk any offence I asked a mod to remove MY post. It looks like CKs post was also removed.

[pje16]

An update
I still feel the same though my speech is getting worse
I do have a voice banked app on my phone a (Speak Unique) which uses my voice when I type into it, that is quite amazing
you can also save phrases, and it keeps a history of what you've used before.
I did send a “Thank You” email to my excellent care team

When you are first diagnosed with MND, after the initial numbness you feel as if you are on your own
None of your family or friends have it, so you have nobody to compare with.

That feeling soon goes away when discover how much help and support that you never knew existed is out there

My excellent neurologist Dr Poneh Adib-Sammi (gives you handwritten notes about your session along with future targets)
told me about the MND Association

What an organisation they are, when I registered they emailed me to arrange a phone call, when I replied explaining my slurred speech meant that was probably not the best idea, Alli Anthony made an appointment to come to my house - amazing.
They also funded the voice bank for the Speak Unique, which is a superb app
The various zoom calls are great, and the forthcoming VR session sounds exciting.

I have great service from the NHS as well
Lydia Lam has given me physio sessions along with arm and neck exercises and just 5 hours after she said she would arrange for me to see a specialist about a neck brace I get a text for an appointment

Emma and Jessica held a great speech therapy session with me and gave a great demo of a speech app for your phone
Emma mentioned a potential coffee morning, that has now come to fruition and is in my diary

Last week, occupational health therapist Laura came to my house to see if there was anything I needed, and also told me what was available for the future if and when I need help. She also mentioned that you know each other, what a feeling to know there is a whole team to support you.

Thank you all so much

[Dod101]

An update
I still feel the same though my speech is getting worse
I do have a voice banked app on my phone a (Speak Unique) which uses my voice when I type into it, that is quite amazing
you can also save phrases, and it keeps a history of what you've used before.
I did send a “Thank You” email to my excellent care team

When you are first diagnosed with MND, after the initial numbness you feel as if you are on your own
None of your family or friends have it, so you have nobody to compare with.

That feeling soon goes away when discover how much help and support that you never knew existed is out there

My excellent neurologist Dr Poneh Adib-Sammi (gives you handwritten notes about your session along with future targets)
told me about the MND Association

What an organisation they are, when I registered they emailed me to arrange a phone call, when I replied explaining my slurred speech meant that was probably not the best idea, Alli Anthony made an appointment to come to my house - amazing.
They also funded the voice bank for the Speak Unique, which is a superb app
The various zoom calls are great, and the forthcoming VR session sounds exciting.

I have great service from the NHS as well
Lydia Lam has given me physio sessions along with arm and neck exercises and just 5 hours after she said she would arrange for me to see a specialist about a neck brace I get a text for an appointment

Emma and Jessica held a great speech therapy session with me and gave a great demo of a speech app for your phone
Emma mentioned a potential coffee morning, that has now come to fruition and is in my diary

Last week, occupational health therapist Laura came to my house to see if there was anything I needed, and also told me what was available for the future if and when I need help. She also mentioned that you know each other, what a feeling to know there is a whole team to support you.

Thank you all so much

Well done pje. I have little doubt that they will appreciate your email. You are obviously getting very good support and that must be very important in your circumstances both for both you and your immediate family. You come across as with a very positive frame of mind and that must also help. Keep us posted and I hope things go as well as they can for you.

Dod

[6Tricia]

I just want to second Dod's message pje. Your positive attitude, with all that is happening in your life, is truly amazing and I look forward to reading your posts for a long time to come!

Tricia

[Clitheroekid]

An update
I still feel the same though my speech is getting worse
I do have a voice banked app on my phone a (Speak Unique) which uses my voice when I type into it, that is quite amazing
you can also save phrases, and it keeps a history of what you've used before.
I did send a “Thank You” email to my excellent care team

When you are first diagnosed with MND, after the initial numbness you feel as if you are on your own
None of your family or friends have it, so you have nobody to compare with.

That feeling soon goes away when discover how much help and support that you never knew existed is out there

My excellent neurologist Dr Poneh Adib-Sammi (gives you handwritten notes about your session along with future targets)
told me about the MND Association

What an organisation they are, when I registered they emailed me to arrange a phone call, when I replied explaining my slurred speech meant that was probably not the best idea, Alli Anthony made an appointment to come to my house - amazing.
They also funded the voice bank for the Speak Unique, which is a superb app
The various zoom calls are great, and the forthcoming VR session sounds exciting.

I have great service from the NHS as well
Lydia Lam has given me physio sessions along with arm and neck exercises and just 5 hours after she said she would arrange for me to see a specialist about a neck brace I get a text for an appointment

Emma and Jessica held a great speech therapy session with me and gave a great demo of a speech app for your phone
Emma mentioned a potential coffee morning, that has now come to fruition and is in my diary

Last week, occupational health therapist Laura came to my house to see if there was anything I needed, and also told me what was available for the future if and when I need help. She also mentioned that you know each other, what a feeling to know there is a whole team to support you.

Thank you all so much

It's very heart-warming to hear about the help and care that you're receiving. I know it's a cliché, but it's easy to get depressed about the state of the world simply by absorbing, consciously or unconsciously, the constant drip of doom from the media, for whom good news is no news. But in the real world, the one we deal with in our everyday lives, there is so much kindness and decency from ordinary people, and it goes a long way to counteracting the `official' negativity and gloom.

I would hope that one of the (very) few consolations of your situation is the realisation of how many truly good people there are out there who want to - and, more importantly, are actually able to - help you.