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Your story…

Send us your personal stories of living with MND along with a photo.  (We reserve the right to edit where necessary). Let’s connect this community of people who have such spirit, courage and determination.

Wellington Young Musicians’ Classical Concert 13 February 2011

Photos courtesy of Hungarian Photographer Eva Kaprinay

Hi I’m Lawry, one of the “Chosen One’s” with MND

I have found a website that is free and great to pass away some time. Check this out www.virtualregatta.com.

  Of late I have sailed “virtual yachts” in real time and winds  both Trans Atlantic as well as a race to Istanbul.. I have just finished the first leg of the “Velux Round the World” race.

Left La Rochelle in France and sailed 8000 miles to Cape Town,  Next leg starts 12th December and  ends in Wellington..(If you miss the start, still enter, they will place you mid-field and you can still be competitive and practice for the next leg. There are 5 actual entrants in this of which 5000odd, (including myself..ahem) have beaten into port, these guys who have all the latest electronic equipment etc and sails.  Currently,(at time of writing) there are still 47000 ‘participants’ out on the water battling winds to get to Cape Town.  The site is very user friendly and you start by selecting your own Yacht name. Choose the colours of the individual sails.

  You can select Auto-start, (Or get up at 2 am ) and then take over when you awaken.. You select whether you use spinnaker or Jib, either one, it automatically tells you what you boat-speed is. Again you “turn” a dial to set your course and immediately a meter tells you your speed.  You just set that when you are happy.

  You can click on a selection of boats and Chat to them via message, ( I had a Spaniard and German on my tail through-out (as well as local friends competing for bragging rights)and we exchange pleasantries, as well I had a brief chat to the leader at one stage , before he ended up  finishing in 52^nd spot.. All are chatty, 50% never sailed before. You get 12 hour weather reports that you can click onto up to 72 hours ahead to plan your course.  So something to stimulate the mind, its one finger stuff, but keeps the mind active.. You only need to say check morning and night until you get close to landfall, as I was last night as close to Cape Town didn’t want to miss the line as wind suddenly turned and I had to alter course a few times..(and wanted to keep the German and Spaniard behind me).. So something for MND suffers and family friends to while away our spare moments.

 Note, you can purchase Extra sails etc, but I see no point, myself and others have proved with good kiwi sailing we can beat the guys with all the gears.  On this site, if you are a Rally fan, you can compete in Rally’s, some mates just did the Paris Dakar, but naturally requires a bit more commitment of time.

  See you on the water. Load me as a friend and say hi, I’ll let you know what’s the weathers doing ahead of you.

 Chin up

Lawry    “Runaground Sue”

Living Life To The Fullest with MND.

 Chris McDonald is a great inspiration in the way he lives life, making the most of everyday. Chris has difficulty with his talking but with the help of Arohanui Hospice’s day-stay centre he came up with a unique way to communicate  with his little daughter Rosema. He expresses his feelings through a song,produced with the help of singer/songwriter Suzy Hawes – a hospice volunteer & musical specialist who has previously worked with individuals to compose songs. When the recording was first played on a television set via a DVD player, for Chris’  family it was an emotional moment for the family. Rosema  knew at once it was her special song, & went straight up to the TV & kissed  the screen. The song tells of the joy he experienced on learning Val was pregnant even though Drs had told Chris that he would be unable to have children. The song calls Rosema a miracle baby.

Chris used to drive a Scania truck so when he got his Jack Russell he named him “Scania” they are always together, great mates. Being outside is where Chris is happiest he can do the “Best Wheelchair  Wheelies” & also helps his Dad who is a builder by towing wood behind his wheelchair. Chris has beautiful smiley blue eyes & he knows how to use them.

We love you Chris.

Reima Casey

Chris’ fieldworker.

Motorised Mike

Mike Rehfled  at his home in Tauranga who was recently successful in his application for Lotto Grant  on his new Motorised Scooter .
The Lotteries Commission is a vital link

Mike with his Lotto funded scooter

for people with MND to access grants for mobility aids which can be the deciding factor in clients maintaining a life of indepence.   Prior to receiving the Lotto Grant it was necessary for Mike  to reside at an aged care facility – since reiving the new Scooter Mike has relocated  and is once more able to access shops, medical appointments and provide support  for others living with MND.
If you wish to find out more about Lotteries Grants  go to  – www.cdgo.govt.nz or contact your local Fieldworker.

                  Photo & Article  Graham Jones  -  BOP Fieldwork.

Little Shoppe of Wonders!

Jan and Len at the till of their Alladin's cave

Remember some of the items in this wonderful store?  Len and Jan have built a wondrous collection of items you might have purchased in New Zealand stores … a few years back! and how beautifully presented they are, taking you right back to the look and feel of  times past.

Len and Jan have put care and love into making this replica store a great delight.

Watch out for the Notorious Cat House Gang

NOTE…. THESE TWO ARE MEMBERS OF THE NOTORIOUS CAT HOUSE GANG & SHOULD NOT REPEAT NOT BE APPROACHED UNDER ANY CIRCUMSTANCES… ESPECIALLY IFFEN THEY’VE BEEN DRINKING….

DON’T BRING EM IN. THERE AINT NO REWARD, JUST KEEP OUTTA THEIR WAY.. HAVE BEEN KNOWN TO ASSOCIATE WITH BIG SHERMAN.