gandalfwhitewizard
House Bee
- Joined
- Nov 11, 2008
- Messages
- 118
- Reaction score
- 0
- Location
- Kent
- Hive Type
- Langstroth
- Number of Hives
- 14
Hi to all who know/meet Widders and myself,
I haven't been on the forum for quite a while and not been that well particularly the latter end of 2011.
The result was a visit to my local hospital in Canterbury and 5 days of extensive tests. The diagnosis was Motor Neurone Disease although I am waiting for the final test a genetic blood test for a rare disorder called Kennedy's disease, which only affects 1 in 40,000 worldwide and unlike other MND's it is hereditary and is an x-linked recessive disorder. Sadly, my three half-brothers are all showing signs of Kennedy's and my grand father passed away as did his brother with MND (possibly mis diagnosed).
One of the symptoms is muscle weakness and heavy lifting is now a no, no and already the max. limit of walking is 40 minutes without being tired and sore.
MND/Kennedy's is a progressive disease with no treatment or cure and not one to let this beat me I have pledged that all the while i can i will do everything to raise funds and awareness of this disease.
We have a just giving page for those who may wish to donate to the MNDA who have been brilliant and are for all MND sufferers the only support/hope of a cure. Anyone who donates and wants a beginners day with us is welcome just donate and PM or email us (we are based in Kent for those who aren't sure where we are). We will do a Queen raising course further in the year and again proceeds will be going to the MNDA.
Please, don't feel sorry for me I'm living with this disease and hopefully if it is Kennedy's disease i will have a normal lifespan but slowly loose the ability to walk, talk, swallow etc., but hopefully a long way off! Until then I will like every other beekeeper enjoy my bees and pass on the things that I have learnt and mistakes I've made!!!
Admin, I do hope that you don't mind my link here.
http://www.justgiving.com/Scott-Sinden
Scott & Geraldine
I haven't been on the forum for quite a while and not been that well particularly the latter end of 2011.
The result was a visit to my local hospital in Canterbury and 5 days of extensive tests. The diagnosis was Motor Neurone Disease although I am waiting for the final test a genetic blood test for a rare disorder called Kennedy's disease, which only affects 1 in 40,000 worldwide and unlike other MND's it is hereditary and is an x-linked recessive disorder. Sadly, my three half-brothers are all showing signs of Kennedy's and my grand father passed away as did his brother with MND (possibly mis diagnosed).
One of the symptoms is muscle weakness and heavy lifting is now a no, no and already the max. limit of walking is 40 minutes without being tired and sore.
MND/Kennedy's is a progressive disease with no treatment or cure and not one to let this beat me I have pledged that all the while i can i will do everything to raise funds and awareness of this disease.
We have a just giving page for those who may wish to donate to the MNDA who have been brilliant and are for all MND sufferers the only support/hope of a cure. Anyone who donates and wants a beginners day with us is welcome just donate and PM or email us (we are based in Kent for those who aren't sure where we are). We will do a Queen raising course further in the year and again proceeds will be going to the MNDA.
Please, don't feel sorry for me I'm living with this disease and hopefully if it is Kennedy's disease i will have a normal lifespan but slowly loose the ability to walk, talk, swallow etc., but hopefully a long way off! Until then I will like every other beekeeper enjoy my bees and pass on the things that I have learnt and mistakes I've made!!!
Admin, I do hope that you don't mind my link here.
http://www.justgiving.com/Scott-Sinden
Scott & Geraldine
