My MND update

[79blue]

Thank you for sharing.

For every reply and message that you've read, there are countless others like me who have read and been moved & inspired by you. Thank you for sharing your heart-breaking journey, and I'm pleased you are going to keep updating on here.

I read your original post out to my wife last night after she was complaining about how crap things seem, and how fed up she is with life. For context our youngest daughter is autistic and her behaviour is 'challenging' at times. Most of us are guilty of living in our own heads and reading a post like yours puts life into perspective.

I can fully understand the stresses and worries that your family are going through with an autistic child.

I have 3 grown up daughters and my middle daughter is severely autistic. She was diagnosed at the age of 3 in 1996. She had very severe behavioural issues and is non verbal. We had little expectation for her in those days. Schooling in the early days was difficult and when she was she was placed in a special needs school nearby, who could only walk her around the grounds to placate her and no teaching was happening.

We fought tooth and nail with authorities to get her the educational environment that she needed. After 3 years we got the funding to a specialised autistic school near Birmingham called Sunfield. This was a boarding school which taught life skills after classes. It completely changed her, to such an extent that she now lives in an assisted living house just a couple of miles away from us. She comes over for the weekend every 2 weeks. It is her birthday next week and she is going to Disney in Paris with her house mates and staff.

Do not listen to the experts, as they will try to limit your expectations. They told my wife not to teach her to read or Makaton sign language, which she ignored. She can now read, spell and sign. She did this at 10 when she sat at my computer and wrote a legible paragraph, we were stunned. She no longer has behavioural issues, which stopped when she was able to communicate effectively. Nowadays if we cant understand her she will type it out on her iPod.

When dealing with the authorities for her needs be the loudest person in the room and keep pestering them until they give up. It does works. If they refuse pester your councillor or MP. Things do to get better

[SLUDGE FACTORY]

I can fully understand the stresses and worries that your family are going through with an autistic child.

I have 3 grown up daughters and my middle daughter is severely autistic. She was diagnosed at the age of 3 in 1996. She had very severe behavioural issues and is non verbal. We had little expectation for her in those days. Schooling in the early days was difficult and when she was she was placed in a special needs school nearby, who could only walk her around the grounds to placate her and no teaching was happening.

We fought tooth and nail with authorities to get her the educational environment that she needed. After 3 years we got the funding to a specialised autistic school near Birmingham called Sunfield. This was a boarding school which taught life skills after classes. It completely changed her, to such an extent that she now lives in an assisted living house just a couple of miles away from us. She comes over for the weekend every 2 weeks. It is her birthday next week and she is going to Disney in Paris with her house mates and staff.

Do not listen to the experts, as they will try to limit your expectations. They told my wife not to teach her to read or Makaton sign language, which she ignored. She can now read, spell and sign. She did this at 10 when she sat at my computer and wrote a legible paragraph, we were stunned. She no longer has behavioural issues, which stopped when she was able to communicate effectively. Nowadays if we cant understand her she will type it out on her iPod.

When dealing with the authorities for her needs be the loudest person in the room and keep pestering them until they give up. It does works. If they refuse pester your councillor or MP. Things do to get better

Blimey that's a lot of stress on top of your medical condition

[ToTaL ITK]

Thank you 79.


Muscle twitching (known as fasciculation) ...
Tingling or pins and needles. ...
Numbness in hands, feet or limbs. ...
Fatigue or extreme tiredness. ...
Tripping and one or both legs getting thinner. ...
Dropping things due to weak or stiff hands. ...
Slurred or faint speech. ...
Swallowing difficulties.

signs of this disease. I have 2 of them.

[SLUDGE FACTORY]

Thank you 79.


Muscle twitching (known as fasciculation) ...
Tingling or pins and needles. ...
Numbness in hands, feet or limbs. ...
Fatigue or extreme tiredness. ...
Tripping and one or both legs getting thinner. ...
Dropping things due to weak or stiff hands. ...
Slurred or faint speech. ...
Swallowing difficulties.

signs of this disease. I have 2 of them.

Some of that could be diabetes

[Sts'ikel]

79, your posts remind me why I come to this forum instead of just BBC sport. Theres SO much squabbling but also solidarity, and insightful stories like yours, humour and above all, common humanity.

I cannot imagine being in your shoes. I hope I have the grace you are showing when my time comes. You've been dealt an awful hand but chosen to educate us all. I'm glad to hear writing and receiving replies has lifted your spirits.

I wanted to just say that I hope you tell your loved ones that they will always be welcome here and they would find love if they post after the worst has happened. Bluebirds should flock together.

You have my absolute best wishes for your remaining months.

[the other bob wilson]

Besides educating and, yes, inspiring the rest of us, it would seem that your messages are having a bit of a positive effect on yourself, keep on writing - clearly it won’t cure you, but what you are doing appears to be beneficial for all concerned.

[Divine Wright]

Thanks for your kind and generous replies. Knowing that there are people out who do not not know me and only have a shared interest in the same football team, but who care about my situation really helps. I found during this period writing about my situation helps my mental state.

After getting through the initial shock and trauma of the diagnosis I thought very carefully how I should face it. It would have been easy to stay angry or bemoan my fate and howl at the moon. I could have ignored it and got into a state of denial. Any one of these options would affect the people around me and they could have made them more upset about the situation and possibly less likely to fully support me. I therefore decided to face my limited future with pragmatism and logic, no moaning, no anger, no despondency, just deal with the situation and the challenges. I try to make light of what is happening and constantly cracking jokes about it. I just did not want my family to remember me as a moaning twat in the final period of my life.

I had my communication and equipment controlling eye tracking system fitted today. This will allow me to speak and control lighting, hospital bed, TV, Sky Firestick, web browser, iPhone and apps. All controlled via a computer screen via eye sight. This will enable me to function when fully paralysed and mute, which takes away many of my fears. Thankfully I will have time to practice using it and fully learn its capabilities before I become reliant on it. The invoice for it showed that it cost £7,000 just for the kit and it took nearly 5 hours for it to be installed. Fortunately I am having it on loan for no cost to me.

Fortunately I am not religious, so no fear of going to hell. I am just expecting the lights to go out at the end.

I know a couple of people who died. They said it was a relief.

.......seriously, I don't know people, but people whose heart stopped and then came back report feeling a huge sense of elation at being able to shed their being.

...that's what I'm pinning my hopes on for me when I go

[KingOfSiamIAm]

Like everyone else I have been moved and have taken inspiration from your posts.

Given all your life experiences, and the the way you naturally articulate them so well, maybe you can write an autobiography of your life?

I am sure that many people outside this messageboard would find it an inspirational read.

[Brian]

Sorry to hear of your deterioration 79blue, your post earlier this year was very emotional, as is this one.

I hope your remaining time is as peaceful as it could possibly be, and you get some satisfaction that your story has had a positive affect on the lives of some of the people who have read it.

[North Cardiff Blue]

Back in March I started a thread about my concerns and eventual diagnosis of MND. I thought I will give an update on how it has affected me and my family.

It started off this time last year when I noticed a limp on my left leg. From then until June I went from walking with a stick, to crutches and finally using a walking frame. Since July I have not be able to walk and last month I lost the ability to stand. My left arm started to weaken from May and is now totally paralysed. The only limb that I can use is my right arm. Once symptoms start in my right arm I suspect I would have 2 months before I lose the use of it.

Since May my voice has steadily got weaker and I struggle to talk and I have great difficulty talking on the phone. My breathing is getting weaker as my respiratory muscles weaken and this will eventually kill me. I expect to be fully paralysed and mute in the next 3 months.

The speed of the changes has been very difficult to keep up with and it has been very demoralising. My doctors and other specialist have been stunned by the speed of the progression of the disease.

From the start I had decided to end my life before the disease did, so in late July I attempted suicide. I took 200mg of morphine (a very high dose) and 40 tramadol tablets, but I survived. The fact that I attempted it has left me feeling better mentally than I was before. I think that is due to me thinking that at least I tried and I will have no regret about not attempting it.

I have to make many changes to my house. I had a stairlift fitted, which will soon be changed for a different one as it will soon not meet my needs. I have a powered arm chair, my bathroom is now a wet room and I use a hospital bed. I have a hoist above my bed and I will have one fitted down stairs this week. I am having a portable computer system soon with eye tracking, which will allow me to speak through it and control my environment, including bed, lights and TV equipment, similar to Stephen Hawking.

My daughter and son in law have moved in to help my wife support me. My wife could no longer help me on her own. I have refused carer support because they would not be allowed to manually move me and I did not want to pay £100 pw for them to to stand and watch. When all the hoists are in I will have them in to help the family. I am really grateful for my families support.

This is a really horrible disease. It has robbed me of my independence, my mobility, my hobbies, my privacy, my dignity and eventually my life. I am now at peace with the situation. I have a do not resuscitate order and an end of life plan where I refuse treatment for conditions that may end my life. I will spend my last days on a hospice ward to avoid my family having to witness and deal with the end stage. My hope is that end will come quickly and that I do not see the end of this football season.

This will be my last update, unless I awaken one morning to find myself miraculously cured.

Very sad I wish you and all your family the best, your family sounds like they are giving you everything at your greatest time of need, as people have said keep posting it puts life in perspective and reminds us of what really is important and not to take things for granted, as circumstances can change at the blink of an eye.

All the very best moving forward.

[Taunton Blue Genie]

The support and messages have been overwhelming and it has lifted my spirits. A few of the posters have said my writings have helped them, particularly uncle bob, who has also gone through a particularly dark time. If I have helped anyone in anyway then that makes me feel much better and glad that I posted my very personal situation and thoughts.

I had planned to stop posting about it after this thread, but many posters have found it helpful and others have asked me to continue. So I will add further updates when they arise. Optimistic Nick asked if I wanted to achieve anything more before the end? I feel quite happy with my achievements in life despite having a difficult start in life.

I was brought up by my father, who served in the RAF, but who was an alcoholic (he died aged 49 due to alcohol). We moved frequently which affected my education and I left school in 1980 with 1 O’level and CSE’s, which severely affected my job prospects. After 2 yeas on the dole and frequently getting into trouble (I was fined £250 for fighting outside NP in 1982), I packed a bag and moved to Devon. I found myself a bedsit and got a job in a holiday camp in Exmouth.

After a couple of years I joined the army, Royal Corps of Signals, which I did for 6 years. This gave me a lot of self confidence and changed my life. I learned to Ski and I undertook the army’s Arctic Warfare and Survival Training in Norway, which is an experience I will never forget.

When I left the army I joined the Gwent Ambulance Service. Starting at the bottom, transporting patients to outpatients and clinics. I did this for 2 years before passing the entry exams to undergo emergency ambulance training. I did this for 3 years before I passed the Paramedic entry examinations and then the Paramedic training. During this time all the studying leading up to the training was done via self learning, so you had to be self reliant. By the time I qualified as a paramedic I had been studying and learning on the job for 5 years, equivalent to doing an apprenticeship. When paramedic training was passed over to Universities, all current NHS paramedics were allowed to claim a diploma in Paramedical Studies.

I decided to continue to study after qualifying, so I spent 6 years studying mathematics and physics with the OU. This allowed me to undertake research secondments within the Welsh Ambulance Service. I had 5 research papers papers published, 4 in medical journals and 1 internally, which changed practice within the service. One of my research studies was published in the British Medical Journal, which is one of the prestigious in the world. This was on how effective school children can perform chest compressions during CPR. I conducted this study in Radyr comprehensive, Cardiff High, Oakfield Primary and Ton Yr Ywen primary in 2006. This paper is referenced by organisations across the world when setting training programmes for children.

I have also written training courses and instructed on them. I spent my last 6 years mentoring staff of all grades whilst being operational. I believe that I significantly improved myself during my life, despite my poor start and looking back I can feel proud of my achievements.

You have achieved more in your life than many or most of us, I'm sure.

[theclaw]

Heartbreaking.