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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
This below is all true and has took place since 2009 and it hopefully shows or reflects the resilience of each of us as humans, (although the people where I originate from are luckily a very tough hardy breed) this also clearly reflects the decision by God as to when we have each individually had enough.

In June 2009 I kept seeing the local GP who kept telling me there was nothing wrong with me. It turned out to be COPD which basically means my lungs were gone. But there was more and I knew this despite the doctors each and all telling me it was all in my head.

In June 2011 they finally confirmed and told me after a six week wait through yet another serious medical error, that I also had the incurable disease known as ALS (Lou Gehrig's disease)

This is an incurable disease there never has been a cure and the actual type I have meant its penalty is death within two to three and a half years, despite it taking them nearly two years to actually diagnose. I determined in myself not to let this get me down, the type I have is Progressive bulbar palsy

Although it’s often very difficult as every nerve in my entire body daily closes down making even the simplest little thing impossible to do. I used to be right handed and worked as an online poet, now I can only type with one finger on my left hand which is also gradually being affected, and it gets really annoying when you constantly hit the wrong key, as my speech is totally incomprehensible to any one, so no more live recitals either. I know if I live to the end I may end up a cabbage, currently it’s in my neck like whip lash and has took over my right side disabling it through paralysis.

At the same time my Sister in law was awaiting to die from Cancer since 2004, her younger sister as also one of my sisters had both been rushed into Hospital with heart problems in the same weekend, and we were dealing with my mother in law who just did not want to live any more after having her second leg amputated by the hospital. She persisted in ever putting herself back in hospital in the hope they would finally keep her in. And my brother in law is a hopeless alcoholic who goes on eight week benders, and is unfit to help anyone. My sister who had already had a bypass operation has an ischemic heart disease, my sister in law with the heart problems is luckily okay and my other sister in law is still going strong battling with cancer when in 2006, they told her then she would not live out that year

We then had to fight the local council to get somewhere suitable to live, and in the end turned to the MND association for assistance, only to find their local support worker rubbish me in aid to put me off using them as they assumed I had no cash or nothing material to give them on my pending death. This is an organisation who boasts they are there to help people die with dignity

Amid all this my second eldest sister died unexpectedly, and my granddaughter not even two year old ended up with a broken leg, after being knocked down by a bus. My sister in law with the former heart problems broke her wrist. Then my mother in law put herself into hospital and gave up the will to live and died and was cremated just before the end of last year

Meanwhile I am, forced to put up with sheer literal incompetence from doctor after doctor and literally no support from the MND association what so ever

My wife has coped with all this no end reflecting her great strength and I have tried as hard as it is not to let this get me down, you cannot imagine the amount of times I have shouted to God that enough is enough. We’re both still here and still going strong even if my efforts may be feeble due to my lack of strength and restricted use via my left hand. So don’t give in and always look out for yourself and remain positive no matter what life throws at you. And more than anything never ever stop praying as talking to God
 
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