One of our members on our Facebook group has sadly passed away in quite tragic circumstances. He was getting out of his daytime wheelchair to get into his sleeping chair and had a fall. He lay there for 30 hours before a neighbor found him and got him to hospital. I cant imagine what he went through laying there all that time. He was a well loved man and was an active supporter of others worse off than himself. Laying there all that time along with his injuries was too much for his already weakened body could take. Rest in peace Gus Churchill. You will be sadly missed by many. Eric Mager.

Well said Eric. Gus was a forthright contributor to the facebook page. I feel throughout his life people knew where they stood with him. He will be missed. It was as you say a very sad end for a man who I am sure had the respect of many.

Very, very sad to hear of such a tragic way to pass. I cannot imagine what Eric must have endured laying on the floor. May he now be in the arms of God, free of disease and pain.

Eric, thanks for sharing this. This is most unfortunate.

Through the years I have heard many stories of someone living with KD having a seriousness fall and the inability to get help.

Everyone, please, read my blog article on emergency notification devices ( Call for Help )and use one of more of them. A cell phone is great, but there are other devices that will also do a good job.

Hi LOLO. Just to confirm it was our friend Gus that passed away and not Eric. It was a very unbefitting end to hs life. Thank you for your message anyway. Best wishes to you. Eric

Hi Bruce. Scott Synden one of our members has set up a basic website for us. I mentioned it a while ago. There is lots to add yet but before it goes live I would like you to give it the once over in case anything needs to be changed regarding KDA references. If any of the wording needs changing, or any other suggestions you may have, advice etc I would rather it done before it goes live. Ive pretty much left Scott to his own devices on setting it up and just want to make sure we arent infringing or breaking any rules. The site is called,
kennedysdiseaseuk.org There is a direct link on our Facebook group. Hoping all is fine with you. Many thanks. Eric

I'm so sorry Eric! I put in the wrong name. Very tragic, wish we had a clock so we could turn back time and stop accidents like this. He must have been hurt in the fall or just couldn't breathe in the position he was in. My husband's grandmother fell at age 101 and was stuck between her bed and wall almost 3 days and still survived another year. Guess all has to do with how one falls.

Bruce, thx for the link, I went to the blog and read the article

Eric, I'll take a look at it over the next few days and let you know. Thanks for all the work that you are doing to improve awareness in the UK.

Thanks Bruce.
Hi Lolo. No prob. Gus was pretty bad with KD before his fall. He probably dehydrated and along with his injuries it was too much for his body to take. He was in hospital for a few weeks after the fall but was too weak to fight anymore. Such a shame. I shall certainly be looking into the link Bruce put up. Take care. Nice chatting to you. Eric

Eric, the way you wrote it, I thought he was found deceased. Still makes it no better. I'm sure his life was better with a friend like you in it. I rarely get on the FB page, I should check that out more often.

Eric, I left you a private message ref. the KD-GB website.