This is my first blog entry. This blog site has developed as a result of the lack of general support and public awareness of the neurological condition called PROGRESSIVE BULBAR PALSY, which is itself a condition akin to the more widely know Lou Gehrig's disease and the condition ALS or
amyotrophic lateral sclerosis My brother Andrew has been diagnosed with the condition just over a year now, and is facing the awful challenges of the disease with some fortitude and bravery.
With this blog, I want to show him and the public in general just how much support is out there, (with a little prompt from yours truly), and over the next few weeks and months I will illustrate just what can be done in a practical way to help
So, how can I do this?
Well this blog will document in photo form, the family, friends and kind strangers that have dug deep and bought the charity wrist bands that support the AMYOTROPHIC LATERAL SCLEROSIS ASSOCIATION
Above is a photo of Andrew with me and our elder sister Ann.
6 comments:
What a lovely thing to do! You are doing a great thing here, bringing this into the light for Andrew! Good luck with your new blog, Janet!
Hi jJanet, and well done to yourself and all my best wishes for Andrew - from John in Australia.
A visit to Michael Wenham's "Diary of a donkey-body" might be helpful. Very best wishes to you all.
Your brother John found our blog and sent me a link to yours to check out....
Congratulations on making the decision to blog and support your brother by getting out there and letting everyone know about ALS!
My husband Rick and I made that same decision shortly after his diagnosis Feb 1 2008. On August 13th 2010 he passed away at 57 yrs from limb onset ALS. That is just two short weeks ago today.
My husband Rick and I went to schools and made presentations to the students as well as shared at various conferences, newspaper articles and also were involved in teaching videos and commercials on ALS. It is amazing what you will be able to do in your area because you have chosen to speak out about this horrific disease.
We couldn't walk or drive anywhere in the area without everyone waving. The students and parents out here in Whitemouth Canada are VERY aware of ALS. They hosted an ALS Walk for the last 3 years and raised not only $ for research but also awareness!
Do what ever you can to let others know of this horrible unkind disease! The recent loss of my Rick has forever changed my life. We did as you did and started a blog to keep family and friends updated but our blog has crossed the ocean.
If there is anything you would like to ask about our journey that would help you, especially your brother, yourself, and your family please do send an email at rfewster@mts.net
I was my husbands full time caregiver for the last 2 1/2 years so I have learned some pretty practical things in the care of ALS also.
My heart goes out to your brother, yourself and your family. I will keep you in my thoughts and prayers.
Joan
Feel free to visit us on our blog at www.oanjay.blogspot.com
Whitemouth, Canada
hi joan!what an inspirational blog,iam so sorry for your loss,it must be all so raw and painful for you at the moment, very humbled that you took the time to write,appreciate your encouragement and kind words, jan
There ought to be medals for people like Andrew and his sister - Blog-on, mate!
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