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PoetChristopherRobin
15th March 2012, 01:25
Hope everyone is all doing as well as can be expected under their different circumstances

I had never asked what sort of MND I had, never ever asked, but just assumed it was most likely ALS turns out its bulbar thanks to the error made by two folk in sending me a copy of the letter about a talking machine, when I do not want the letters, as they will only cause my other half grief in time when I am gone.

My worry now is it took them two years to find out it was actually MND, which means I will not have that long left. Itís a damn shame that these folk are here to help you die with dignity, and they just cannot get it right, no matter how hard they try. I just hope they never ever have to live through this themselves. Mistakes made should happen once and once only in such situations

Other than that Iím okay have an electric wheel chair, and a folded bath sheet under my pillow helps my neck pains (like to whip lash) no ends. But itís getting very difficult to type with the one finger on my left hand, more and more daily, my right is now totally out of action, and itís getting harder to walk and breathe normally not forgetting I also have extreme emphysema as also copd on top off the MND (which basically means my lungs are gone too)

The talking machine a DynaVox v max is okay too other than being very heavy and extremely slow at starting up from power on

I also bought a program called natural reader, this reads anything aloud typed into msword or office and reading my poems I would rate it at 95% it only cost me £32 for the two voices, well worth it for anyone with speech difficulties

Itís getting harder to sleep in bed too as I can only relax on my right side after a good hour of fighting to get to sleep, and finally eating, walking with a stick is becoming a very slow task indeed and very problematic

I had a terrifying experience last week where I could not breathe, it felt like I was drowning, this was apparently down to the copd and emphysema. Iíve been on steroids for 10 days and am seeing a nurse next week about a nebuliser

Other than that Iím ok and still writing the poems, and adding numerous cut down versions of the poems onto facebook every day

elle
15th March 2012, 23:39
A big welcome back Chris,
you have been very much missed,i replied to you on the "what makes you smile thread" not realising you had started this one oh well replied twice to you now, so sorry to hear your having a lot of problems i suffer with COPD and bad asthma it's a scary experience when you can't breath , i think we are all facing difficulties with this disease it's a very difficult one to deal with and we have no choice other than deal with it best we can.
It's good that your still able to write your poems keep it up as they are a work of art and a credit to you
you take care Chris x Elle x :):):)

PoetChristopherRobin
16th March 2012, 00:11
Hello Elle, am starting to miss the keys when typing, but am keeping motivated too,

They wanted to charge the mnd hospital support here in newcastle £100 for a tiny keyboard, which costs about £5 at a computer fair, Disability is one major rip off truly

Hope you're doing okay, they say the pain is a part of the mnd for numerous sufferers

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