Status
Not open for further replies.

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
It started with me as a teen back in the 1970’s I broke my right index knuckle several times over during the years.

Each winter my right hand was no good in the cold weather the finger was in effect dead in 2009 the knuckle got so bad that I could no longer even write or sign my name and had terrible problems typing

In March 2009 I stopped smoking as I kept getting a tight chest in the winter and I also kept getting what looked and sounded like a hernia, the Hospital gave me a good number of scans yet nothing showed. I was also tested for prostate cancer.

Then my speech started to slur something terrible in the cold winter. I had real problems catching my breath I had Emphysema (basically meaning my lungs were now on their way out) during 2009 I went to see a local GP, three times because I was out of breath while watching Television. Three times in all he never bothered to examine me and said it was nothing.

In November 2009 I managed to see the practice owner who told me it was COPD (common obstructive pulmonary disease) which means my lungs are badly damaged, since seeing Doctors regularly at the local Hospital it also appears that I have extreme Emphysema

In 2009 more so 2011 I kept tripping over my right toes when walking and started losing my balance (e.g. when taking or putting trousers on or off or standing up in the bath). Then the yawning started, not because I was tired but because my blood was apparently starved of oxygen, then it was extreme cramps in yawning like lockjaw when sleeping and waking up.

Then my right arm gradually ceased to be any use as my hand too could not function any more. Next I started to lose partial use of my right leg and the slurred speech became a daily event. It has occasionally been that the left side of my body too has the same occasional spasms. Then I had problems when eating, could not turn the food in my mouth and it feels the right side of my body is partially paralyzed.

I’ve started losing balance even when out now and in the home too, I know this is getting worse as months weeks and days pass.

I saw a hand surgeon a specialist who offered to take a half an inch of the finger to make it look better but not to make it function normally what was the point?

In the process of all this I saw a Doctor who was a multiple sclerosis specialist as my speech was also daily getting slurred and I as friends and family assumed it was MS. He told me very bluntly that it was not multiple sclerosis and said it was to be called you’ll just have to live with it”

Meanwhile my breathing was daily becoming more difficult as too was the slurred speech and I even started tripping over my toes and found it difficult to keep normal balance.

I would use the Toilet frequently and if needing to urinate this would push on my bowels and cause me to have faecal incontinence. I also started to face problems when eating with food sticking to roof of mouth, and I suddenly kept biting lower inside lip while eating and also found I was getting severe leg and hand cramps lock jaw lock neck and cheek muscles also daily awakened by extreme leg cramps.

I had to push the local GP to get a second opinion on my hand as also the multiple sclerosis, and I had persistently kept saying to each of the specialist Doctors that they must know what it was or recognise the actual symptoms.

The hand doctor (not the MS doctor) this time got me to see a Neurophysiologist he put fine needles in my muscles and he found out exactly what was wrong with me. The results concerned him so much that they were sent back to the MS Doctor also the Hand Specialist and local GP Not one of those ever even bothered or even checked what was actually wrong with me. It was not until I saw a consultant Urologist some weeks later and he was looking at my files that I found out it was recorded that I was suffering from motor neurone disease

Everyone was now more concerned with the fact the consultant urologist who had seen this on my file and he had told me this but was not qualified.

Not one person even acknowledged that it was in my records and no one had bothered to tell me and that if not for the consultant urologist I would likely die without knowing I even had this disease, of anything this consultant urologist should be highly praised where as Doctor
With his diagnoses called you’ll just have to live with it” should really have perhaps been struck off.

As such when I relayed this to the local GP and they were adamant I was incorrect in the end they had to actually contact the consultant urologist to find this on my records

After my reading more about the disease and symptoms I can say indisputably that this is precisely what I have without any question at all, I finally saw a motor neurone specialist on the 22nd June 2011 who confirmed it is indeed motor neurone disease bulbar palsy (PBP) which gives me six months to three years life span this is including the two year it took them to diagnose

There is no cure for this, it is said to be rare and caught mainly by fit sportsmen and women, 5% of people get this from their parents the other 95% just end up with it. It is not the sort of disease that people can catch from one another.

I’ll end up if I live long enough in a wheel chair unable to move walk or talk, will likely end up on oxygen too and need a neck collar. Oddly it will not affect my sight hearing or brain.

Today I type with my left hand a single solitary index finger and I am determined to gain major public awareness of this disease, and help the motor neurone disease association gain more funding

Then it got worse, the UK MND association claim they are there to help folk die with dignity

I had wrote a letter to the press and also sent it off to the housing, and I asked the local North East MND support worker to support myself as every disabled person in the North East with housing. She foolishly then sent the letter to myself in error?

That support worker sent a letter to her senior painting me out as a trouble maker and effectively wiping her hands of me. Yet the charity is said to be there empowering people with MND to achieve the highest quality of life possible and to die with dignity

I am dying from Motor Neurone Disease and Common Obstructive Pulmonary Disease too

The MND association said it was typed in error and they are doing nothing other than apologise to me (yes like I was born yesterday too) will let you all know in time, as it’s no good having a back stabber working as spokesperson for folk who are dying?

How many other families is this person causing trouble for, she is not empathetic to the fact I am dying and being bullied by a local council as also a terrible prime minister, and obviously feels that folk with any disability should not as do not deserve any help at all

This is her letter, and I am now so fed up of life of all the knocks and kicks that “everyone gives you when you are down” solely for sticking up for your disability, I AM dying for God’s sake and my situation (NOT CREATED BY MYSELF) did not warrant the below response sent to her supervisor

(Quote)

Please see the email from this man with MND below. I've been trying to support him with his housing situation for the last month - soon after his diagnosis. I've spoken to Newcastle housing depart and written to North Tyneside but he has been very difficult taking out litigation and complaints against them. He refuses to work with the systems or accept advice and instead gets aggressive threatening legal action so alienates himself. His housing situation is terrible with very poor access and he really needs rehousing as his mobility is deteriorating.

He is increasingly contacting the Assoc and very active on the on-line forum. He spoke to Liz (MND Connect) yesterday and I think this may increase. He is a difficult personality and quick to criticise. I just thought you needed to be aware of the situation but don't really think there is anything more that we can do.

(End Quote)

(We will not be forced to move and live in the slum areas of this city simply because of the fact that I am disabled which itself is illegal in human rights, and we will not be robbed of our basic human rights nor will we be ignored when sticking up for every disabled person in the north east)

(Why would the contact with the organisation now increase I have only contacted them three or four times in all since June 2011, plus it is not nice being told help is there but it is not to be used by the sufferers needing that help it seems she does not wish us to use the MND help line either. In time to come I will not be able to talk let alone type and this harsh criticism is from someone employed to help and aid folk like me.

Indeed who needs enemies with friends like this working for registered charities said to be there to help folk who are dying?

This pre judgmental criticism is harsh and unfounded and is from someone employed and paid to help and aid folk who are dying from an illness to which there is no cure, someone quite clearly untrained as unfit and unable to do the given job or to relate to the actual disease and the disability.

No one asked for this persons help other than to get North Tyneside Council “to understand that sadly folk with MND are indeed terminally ill as are Cancer sufferers too” which I have since managed alone without any one's help, in this criticism it is also saying I effectively had no right to contact the minister for disability either. Oddly enough she too refused to comment or respond or offer any beneficial advice

The MND association globally are a first rate charity, why they want to entertain paid workers like this workers clearly determined to destroy their credibility and aim is a shock and a disgrace to every MND terminally ill person as family across the globe


Despite all this I'm still smiling and ever hopeful, and still just able to walk
 

Sammantha

Senior member
Joined
Aug 11, 2007
Messages
501
Country
Uni
State
NC
City
Newport
Mother F-----S! Look at the way you had to live half of your life! Most people would have taken their's by now! Doctors think A: you may have MND but lets wait until your dying to be sure and tell you; or B: You are finen you are bothering me, obviously its from your lifestyle or your exaggerating...NEXT! Then if you are lucky enough in the early days to stumble unto a dr like your urologist who actually READS your record and lets you know what you have, you can feel vindicated! They robbed you of those few years you had to live a good life, because of their incomptence OR because they feel its better you not know! Someone who is not suffering from an illness should never think they know whats best for you! I applaud your strength and courage...its an inspiration. I hate that you had to spend those years fighting for a diagnosis, if its any cosolation your will to live through all that inspires me immensely.
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,663
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
City
EGA
Love, love, love, Sam's post!
 

johnnyliverpool1

Distinguished member
Joined
Jul 5, 2011
Messages
474
Country
uk
State
moved back to blighty
City
britain
poet chris....i have great sympathy for your situation...i have had the odd double talk from my neoros too....but in defence of our country and government...prime minister cameron will pull us out of the mire...its fair to say that the benifits system is extremely generous in great britain......for example...u are being provided with a suitable house for your needs....except u want to pick and choose were.......ur rent paid by the taxpayer....free council tax...food, heating , wheelchairs and any other aid...free medical....ect ect...and when needs.. a free vehicle and tax insurance and maintanance......thanks too those who work and pay taxes......blimey, all that ....its a fair bet you could not get a job were you could afford such...our us friends would envy u.......rule brittania........take care johnny..
 

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
Thank you Samantha, the most annoying part of it all was the obvious lack of support from the mnd support worker with the re-housing, which I again took on myself and managed to secure us a custom built bungalow without any one persons help

Johnny I know exactly what you are saying, it makes you think how lucky we are to be in the uk when you come into a forum like this and read cases where folk have to pay for their own treatment etc and basically they get no help in comparison

The only beef with UK Government Prime Minister and minister for disability alike, is they both ignored a case of clear cut disability harassment by the ombudsman’s office staff, (this is another story)
 

johnnyliverpool1

Distinguished member
Joined
Jul 5, 2011
Messages
474
Country
uk
State
moved back to blighty
City
britain
poet chris....yer gotta laugh or u cry...spike milligan ..loved his nonsense poems.....the rest of the poets made no sense to me.......like ballet, high brow music....am just a philistine, cant dance ,,,cant sing, cant do anything,,,that rhymed..am a poet and i dont know it......am a fool am johnnyliverpool.......
 
Status
Not open for further replies.
Top