MND Lunch update

In the first photo we have my wife Jan, Wendy, Dave & his wife Merle, Helen & Anne Marie.
In the second photo we have myself, Wendy & Jan.
In the third photo we have Dave (behind the bush) & Merle, Helen & Anne Marie and Jan, Wendy obscured.
I think another lunch will be on the cards shortly and hopefully more members will be able to make it.
(Sorry about the quality of the first photo, my balance is not the best and trying to take a photo at the same time was fun....) click on each photo for an enlargement.

Feedback on the lunch..It was a fairly nice day and the MND members met inside. We didn't get the turnout that we were expecting but it was still a neat group of people. The menu was poured over and we all had something different. Food was excellent as was the wine for those who had it.
It was a very relaxing time and enjoyed by all. Plenty of car parking outside. (And wheelchair friendly)

MND Events

With the Wellington branch of the MND Assc. there is a monthly morning tea which is held at the "Arthritis Rooms" in Petone. It is a chance for everyone diagnosed with MND and their carers to get together, exchange stories, hear how other people are coping and at the same time have a drink and a bite to eat.
I find it very rewarding and have made friends with one woman whom I shall call M-A. With laughter on both sides she is described as "the other woman" The thing with MND is that you can get very lonely and it is better to be happy (as much as you can ) in the circumstances, than be in a posistion where you know no one. Life ( for those with MND or any disibility for that matter) ) is far to short for that . It is important to have a good team of people you can call on, not only for medical assistance but for the friendship and companionship that those with MND need.
Tomorrow we are going to meet at the "Bellevue Gardens" to have lunch with the MNDANZ and hopefully there will be a good crowd. I will let you know how it goes.

Te Omanga Hospice

Yesterday Jan and I paid a visit to the Te Amanga Hospice in Lower Hutt. This is where I will go for respite care . We were taken right through the building and were very impressed with what we saw.

Perching Stool

Another great item is the Perching Stool pictured here. To give an idea of size, from the floor to top of seat is 630mm. Height can be ajusted on all four legs and you can have it so that the seat is sloping down and your feet are just touching the floor. Its then a simple matter of standing up without any effort . Really great. I was using it in our shop when I was pressing out beef patties ( Jan and I own a Gourmet Burger Shop ) as with my balance I couldn't stand unaided at the time.

My first fall

Today was another step down in the MND stakes. I had my first fall, in a computer shop of all places. It was early afternoon, tripped over my own feet and went down, almost felt like slow motion, just grazed the top of my head on a corner of a metal shelf. Could have been a lot worse. On a brighter note have bought a Web Cam so can now talk to people like myself all over the world.

An also must have for anyone with MND is a trolley like this, no more spilling the 'cups' of coffee etc. Legs can be adjusted for height. A wonderful addition.

Have noticed that my legs are both jumping a lot more with increased movement in the right leg (my left leg is where it all started) . More so at night time when lying in bed. At this stage of the disease I am still not on any medication altho I was taking Omega 3 (fish oil) for a while. The one thankfull thing about all of this is that I am in no pain......

June 20th 2006

Motor Neurone Disease

My name is Robert Andrew Coutts of Silverstream, Upper Hutt in New Zealand.

I was diagnosed with Motor Neurone Disease (MND) on 15th December 2005. I am 64 years of age, married to a wonderful woman called Jan and we have two son's, John 25 and Phil 23. Six months have gone by and my status at this moment in time is that my walking ability is not the best. As you can see in the photo I have a very good walking stick but I have also been issued with a wheelchair which is really great. It means that Jan and I can now get out and enjoy the walks that were so much a part of our life.

In the Hutt Valley where I live we have a great support team. The main office for the New Zealand MND branch is in Wellington.. http://www.mndanz.org.nz

I have been asked many times by friends and family if I am angry or bitter about what has happened to me and I have to answer, No!. Why that answer..Why not, I can't undo the diagnosis. I have to make a stand and get on with life as best I can. At the time it was a shock and as Jan tells people, "We don't have to accept what Robert has, but, we can live with it". And that is what we are doing, taking each day as it comes and being very positive.

There are many changes that we have to make, like anyone with this disease, none the least is that we will have to sell our house as it has stairs (two story townhouse) and look for one on the flat. You don't realize just how many changes have to be made until you go to climb out of the bath, try to make a simple cup of tea and carry it to the table, wash the dishes, the list goes on.

Here is a link to the Scottish MND web site http://www.scotmnd.org.uk/

June 21st 2006 is Global Awareness Day for all those people affected by MND