Learning Lessons

[Admin_MND]

This thread has now been locked due to several comments that have been made which break our Forum Guidelines.

Please can we urge all Forum users to please refresh themselves on the guidelines https://forum.mndassociation.org/forum-guidelines. We will be removing any comments which break our guidelines and/or upset other members.

[Admin_MND]

Dear John,

I was offended by your comments previously about my 700 day stay in Salford hospital. I am entitled to be "bitter".

When you are bed bound and cannot talk, care becomes very problematic and when some auxiliaries really can't be bothered to provide the level of care necessary in the frenetic environment, then life becomes unbearable.

I have now learned that you have complained to the MNDA about this thread!

I expect and demand a public apology from you.

Hi Graham,

We can confirm it wasn't John D and we hope you will issue John an apology.


Thanks

Forum Admin

[John D]

Graham - I have never complained about any thread or post. I trust the MNDA Administrator will confirm that.

[matthew55]

I wish I'd joined earlier mate. 😉😆👍🤗xx

[Graham]

Interesting Matt. Romans threw deformed babies on the trash heap, within living memory the Irish put babies out of wedlock in the sewers too!

I think just before you joined, a forum member implied that we with MND were all suffering bad karma and could not understand why her husband had MND, "...he has only ever been good"! Obviously I reacted but then took criticism from other forum members!!

Yes, I agree that some think our lives are cheap and we complain too much and that we are even bitter!

It is a matter of education and going through MND is a start.

[matthew55]

Spartans threw us off cliffs, the Chinese kill girl babies, animals do their thing. Life is cheap. 😡☹️xx

[Graham]

Yes, I agree Matt. When your loved ones turn against us with MND, life can seem like it is impossible.

People throughout the ages must have had MND. It was always considered to be a 'curse'. There must be a possibility/probability that those with MND were sacrificed or used as bait for the young warriors by the village elder.

[matthew55]

I am convinced that in certain circumstances individuals can concisely decide to die. I have experienced it.

[Lynne K]

Good luck for that Mathew x

[matthew55]

I have no idea. I'm seeing my community neuro tomorrow so I will ask her. 😁👍😘😍xx

[Lynne K]

My next clinic appointment at Salford is 1.30 on 8th September Mathew. I’m with a great female neurologist. I don’t think that we’re supposed to put names on here. I vaguely remember that you are with somebody else. How come you’ve not heard from them? Lynne x

[matthew55]

I'm with Salford but haven't heard anything from them in ages.

[Lynne K]

John, I signed up for the MND Smart Trial at Salford Royal (Greater Manchester) but failed that they do initially. But I had all of those tests and more done by referral from my GP and results were good. I contacted the trial specialist nurse via email to let her know and since then asked in an email if she’d yet had authority for me to go back onto the trial. She doesn’t usually reply to emails but I expect that she’ll catch up with me at my new clinic appointment in the first week of September. Lynne x

[John D]

I registered for MND-Smart which has recently opened trials at St George’s in London so hoping to be called in despite losing my voice in the meantime.

Is anyone on here involved in that trial anywhere?

[Graham]

For the first time EVER, there are a couple of treatments available for MND for a small subset of variants. They are experimental and you may have to ask to join the trial.

Amazingly, our spinal cord falls apart in many variants of MND. This is detectable with a spinal tap.

The NHS typically tries to fob you off, but there are exceptions to every rule.

Asking / talking about the above two FACTS with your consultant will tell you everything you need to know about your consultant!