Poet Chistopher Robin
Distinguished member
- Joined
- Mar 17, 2012
- Messages
- 147
- Reason
- PALS
- Diagnosis
- 06/2011
- Country
- UK
- State
- Tyne and Wear
- City
- Newcastle upon Tyne
Hello all,
I was diagnosed in June 2010 after taking two years to find out what was wrong with me. I assumed it was mnd als turns out its bulbar palsy. Sadly I used to be a poet online via three very popular web sites, but since my right hand is now partially paralysed as my right side too, I can only type with one finger on my left hand. This too is getting very difficult, I only found out what type it was 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. It’s 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 I’m 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 it’s 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 it’s 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
It’s 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. I’ve been on steroids for 10 days and am seeing a nurse next week about a nebuliser
The local mnd support worker did not want to know me as she reasoned I had nothing of value to leave the mnd association when I finally die as said already above It’s 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
I’ve wrote numerous poems about mnd from my own and other sufferers points of view and I hope I will be able to share them each sand all with you
I was diagnosed in June 2010 after taking two years to find out what was wrong with me. I assumed it was mnd als turns out its bulbar palsy. Sadly I used to be a poet online via three very popular web sites, but since my right hand is now partially paralysed as my right side too, I can only type with one finger on my left hand. This too is getting very difficult, I only found out what type it was 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. It’s 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 I’m 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 it’s 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 it’s 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
It’s 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. I’ve been on steroids for 10 days and am seeing a nurse next week about a nebuliser
The local mnd support worker did not want to know me as she reasoned I had nothing of value to leave the mnd association when I finally die as said already above It’s 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
I’ve wrote numerous poems about mnd from my own and other sufferers points of view and I hope I will be able to share them each sand all with you
