Never Give Up.......Motor Neurone Disease.

Monday, July 31, 2006

Thank You...


Seven long months have gone past (dx on 15/12/05) and I would like to say a special thanks to my wife, Jan. It hasn't been easy on her, keeping an eye on me and trying to run a business as well. We both have our moments but as long as we can be positive and strong in our dealings with this crippling disease we will be alright.
Photo taken at home 30/7/06
She has been and is the light in my life, my support and will always be there for me . Today was another step in my fight with MND. We sold our house so sometime in the very near future there will be NO more inside stairs for me to climb. I will admit that in the last few weeks they have become just slightly harder to get up but as long as I can keep pulling myself up with the help of a very good hand-rail I will be alright.

Now we have to find ( and many of you have had to do this ) a house on the flat, and we may sell the business so when and if that happens Jan will be able to spend more time with me. Also a long overdue holiday is on the cards. Lets see, Australia, Europe. No, I think we will take the time to see some more of our own beautiful country.......

Sunday, July 30, 2006


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Saturday, July 29, 2006

Relaxing at home..


At home relaxing with three of our four cats. On my lap is Leo, lying on top of him is Rogue (hand-reared) and by her self is Jess, our old lady. The things we do for our pets, IE, Jess is lying on an electric blanket as the night's have been cold and she likes the heat.
Mind you, I'm not complaining sitting on it as well.

AGM WELLINGTON BRANCH


On Saturday 22 July at the 'Arthritis Rooms' in Petone the Wellington Branch Annual General Meeting was held. There was a very good turn-out of Committee members, those with MND and family members.
The guest speaker was Dr. Zainab Contractor from the Hutt Hospital who made a presentation on MND then there was a question and answer time. This was followed by soup and a light lunch about 12.30pm enjoyed by all.
Three of our committee.....
left - right. Helen Milloy, our wonderful fieldworker / Gerald Boot - Executive Officer & Wendy Smith, President. The meeting finished just after 1pm.

What is MND...

Motor Neurone Disease (MND) is an all embracing term used to cover a number of illnesses of the motor neurone. Amyotrophic Lateral Sclerosis (ALS), Progressive Muscular Atrophy (PMA), Progressive Bulbar Palsy (PBP), Primary Lateral Sclerosis (PLS) are all subtypes. MND is the generic term used more in Europe whilst ALS is sometimes used more generically in the USA.
These diseases are also known as Maladie de Charcot, and are often referred to in America as Lou Gehrig’s Disease, after the famous baseball player who died of the disease.
ALS/MND is characterised by progressive degeneration of the motor cells in the brain and spinal cord. The motor cells (neurones) control the muscles that enable us to move around, speak, breathe and swallow. With no nerves to activate them, muscles gradually weaken and waste. Its symptoms may include muscle weakness and paralysis, as well as impaired speaking, swallowing and breathing. In most cases it does not affect intellect, memory or the senses.
Progress is relentless and generally rapid, with a life expectancy of between two and five years from the onset of symptoms.
Though it can affect anyone, ALS/MND is more often found in the 40 to 70 year age group. Once thought rare, it is in fact quite common.> There are nearly 120,000 cases diagnosed worldwide each year. That is 328 new cases every day! The impact on the community of ALS/MND is usually measured by the incidence and prevalence of the disease. Incidence is the number of new cases added in a defined period, usually a year. Prevalence is the number of cases existing at any point in time.
The incidence of ALS/MND is 2 per 100,000 of total population, while prevalence is six per 100,000 of total population. Research has found that the incidence is higher in people aged over 50 years. Only 10% of cases are familial (inherited) with the remaining 90% sporadic.
The disease affects each individual differently and can have a devastating impact on family, carers and friends.The rapidly progressive nature of the disease requires constant adaptation to increasing and changing levels of disability which, in turn, require increased levels of support

( I pasted this from another web site)

Monday, July 17, 2006

Web sites for MND

Two very good web sites for those people with MND or their carers . One in London and the other in America.

www.build-uk.net & www.patientslikeme.com

I have joined both. At this moment in time I am still able to walk but finding it more and more difficult. Jan is taking me out a bit more in the chair and it is good for the both of us. I have also in the last few weeks noticed a movement in the right side of my face from my nose across to my ear. Only happens at odd times. There is also more twitching in my good leg (right) as well as the left.

Monday, July 10, 2006

Holiday in New Plymouth



In Easter of this year Jan and I decided we would go to New Plymouth to spend some time with our son John and his partner Tania and her three children. With my walking being what it was we also decided that just maybe we should look at hiring a wheelchair for the duration of the time that we would be there.
It was a very good move on our part. We arrived at our sons place late afternoon and made a fuss of by the family. Next morning after having breakfast we all piled outside with John in charge of the chair. I walked as far as I could down to the end of the street (not far) and then got into the chair.
I can only describe the whole time that we were out that day as wonderful. I had a ball being pushed around by John, Tania and of course Jan. New Plymouth has a fantastic walkway along the foreshore and it seems to go for miles. A lot of people, in wheelchairs (both manual and electric), bikes and other forms of mobility plus those who just walk or run use this wonderful asset to New Plymouth.
For anyone with a disability using a wheelchair is the last resort. But it shouldn't be. Having a chair for myself has opened up a whole new world to me. It means that I can be independent. I can go shopping, go to the Movies or even hop on to a bus or train.

To anyone reading this who is unable to walk for whatever reason let me say that to use a wheelchair is not giving up on life. Quite the reverse...I can still walk at this stage, slowly and with a stick and I must say its hard work at times, but, the chair has made life so much easier, not only for me but for those around me as it means I can join in with whatever is going on. GET OUT AND ENJOY THE TIME YOU HAVE....





From the walkway we went into the town proper and at one time I had a passenger sitting in my lap, Isaiah, the youngest of Tania's children. He thought it was pretty cool being able to have a ride. A great day had by all. Sunshine, fresh air, ice cream's and the enjoyment on my part of being pushed around by those who love me. Really nice.... The wheelchair was well used in the time that we spent in New Plymouth.

In the photo on the left is Tania's oldest girl, Shianne who also had a great time in her powered wheel-chair. Shianne, 8 years of age is a bright young girl full of life despite also having a disability.
She is the sort of person that makes you want to do better yourself. You know...if she can do that or this then so can I.