Second time around

[Londonpaul]

Hi guys,

I am fairly new to this forum. I have mostly just been lurking.

In a funny twist of fate, this (MND) is my second terminal diagnosis. In 1997 I was diagnosed with HIV; at that time, there was no effective treatment. Over the years, considerable advances in treatments, so HIV has gone from a terminal illness to a chronic disease.

Who knows, there might be an effective treatment for MND just around the corner - I could go for a third terminal diagnosis.

Hey ho, life sucks, then you die. But I have had some great times in-between.

All the best,

Paul.

[Lizzie]

Hi Paul. You’re right that having MND doesn’t preclude you from other life limiting conditions, but It’s great that you can stick with the positives. It really is the only way forward. We need to find the things we can do and enjoy, and stick with them. I wish you a smooth road ahead . 🙂 Lizzie x

[Barry52]

Hello Paul and welcome,

I’m pleased you got a second chance and if only the research was funded in the same way as HIV then I think we would have a better treatment than riluzole. It is ironic that one of the drugs used for treatment of HIV is now in trials for MND.

Best wishes,
Barry

[Gordan1111]

Welcome Paul - We hope you you get your wish!

[Bowler]

Welcome Paul. You are one tough cookie. The world awaits a breakthrough.

[Ellie]

Welcome, Paul x

[Beemer]

Oh my goodness Paul, you are lucky
I have been lucky up til my 63rd year, previously I had been fit as a fiddle, until I was diagnosed with MND in 2020, and whilst I was going through the tests they found thyroid cancer too. Pah, the cancer was nothing compared to MND as they cut it out. I wish MND could be dealt with in a similar manner.

[Lynne K]

Welcome onboard Paul. You have been through the mill. Here’s hoping that as you say a good treatments for MND develops similar to the HIV breakthrough. Lynne

[matthew55]

Keep dreaming kiddies 😉😄x

[denise]

Hi Paul
nice to meet you. What a wonderful attitude.
Denise xxx

[nunhead_man]

Good afternoon Paul

Good to hear from you on this forum and good to know you are being a good fighter with your motor neurone disease.

Indeed, MND may not be the only thing that people diagnosed with MND have and I count myself lucky in a way that is all I have at the moment.

Best wishes from another MND warrior!

[Suefromwakey]

This is a bit like the finding out that the Dexamethasone used for some Cancers gives Covid sufferers a better long time survival rate, they say up to 5,000 fewer deaths could have been noted if they knew about it from the start of the Pandemic,

They have to keep on testing everything they possibly can - I don't see this as false hope but more of a positive

[SueM]

Welcome to the forum Paul

[richard]

Welcome Paul to the ‘club’ no one wanted to join. You will find lots of friends here. Feel free to ask what you want, or shout, scream, rant, rave, laugh or cry. We have all been there.

Richard