AGM

12/9/2011

Had a good time at the AGM at Stanstead, met some great fellow forum members which i really enjoyed, its good to chat, have a laugh and share problems with. Plenty of photo's taken so i will post them when i have them.
The meeting itself was pretty good. i loved the talk on stem cells which was put across fantasticley well and shows a lot of promise for the future, i never really thought this would be the way to go but i was convinced otherwise. Another thing that stood out was their was over 30 fellow "tosser" sufferers which was a first.
Like everyone it seems the MNDA are tightening their belts, thats fair enough but does worry me slightly, they need to save money, now its not my job to say how they could but i know a few ways. One element was negotiating with suppliers, clos o mat is one, i have personally been told that funding for these is being looked at which dissapoints me as my hands are getting bad. Why dont we have a list online of all equipment available for loan that is no longer used? their must be loads dotted about the country, passing things on must be the best option.
One thing i cannot fault is the commitment and passion of the volenteers, i cannot thank them enough for what they do for us.
I had a go of the eye gaze system and wow how good is that, using a computer once hands have gone is possible, but like everything for us it costs, 5 grand for basic and 11 for wheelchair mountable! cant see anyone getting that for me. You should only have this disease if your rich!!!!
It was worth going to the AGM even though elements of it made me sad.

On a personal note i'm pissed off. Legs getting worse, falling regular, hands are bad, the left is getting as bad as right and to top it off i know its hitting my throat and speech, hence the word "TOSSER" I need my extension ASAP, looks like i wont get a clos o mat, still waiting for ramp at the back so i can get out on scooter, OT never rings back, need get wheelchair sorted but dont know where start, lost my physio community nurse (nobodys bothered to tell me though) and everyone ive tried ring today is not available aaaaaaaaaarrrrrrrrggggggggggghhhhhhhhh other than that im fucking fan dabby dosey!!!!

Sorry for language.

4 Comments

janet parry

12/9/2011 03:59:19 am

Glad the meeting went well and that you enjoyed it and made new friends -meeting the other guys from the forums- must be nice to put a face to a name !! I think you have a brilliant idea , there must be a lot of equipment donated that can be recycled-Andrew`s wheelchair ramp has just cost him £1600-I was shocked ,no idea it would cost that much ! have you asked the mnda for support/wheelchair ? is the forum any help with that sort of thing ?
Don`t apologize for swearing -you should hear my language when I get going !! thanks for the plug on facebook-I`ve sold a few bands today, thanks to you -every little bit helps xx

Linda

12/9/2011 07:58:12 am

That's a great idea Chris:) There must be heaps of items lying around which could be of great use to someone else. A medical equipment "freecycle" would be the way to go. I'm wondering if UK freecycle has something like this? What is the problem with communication!!! How can you lose your physio nurse and no one notify you:( Grrrrrrrrr How far away do you think your extension is going to be? Is there any chance it will be this side of Christmas? I'm praying it will be. xxx

steve

12/9/2011 08:05:34 am

hi chris
I have been keeping up with your blog and I can identify with everything you are experiencing. Regarding the comments made to your wife; although this hasn't happened to me (at least to my knowledge), I did go through a phase of being preoccupied with thoughts about someone stepping into my shoes, particularly as a father. But as the boys have got older it worries me less as I have had more time to forge a relationship with them. They were only 6 when I was diagnosed and I feared that they would barely remember me. But they are nearly 11 now. Saying that, I do feel guilty as they would probably benefit from a father figure who is physically able to bring them up normally.
Regarding the eyegaze, I know it is very expensive but if you can find any way to raise the funds it will improve the quality of your life more than any other bit of equipment including a wheelchair in my opinion. If you want to pursue fundraising I would do everything I could to promote it.
regarding the ramp OTs are great, to a point. I have had two, the second one much more realistic and prepared to advise off the record. Although such advice is usually what I have already worked out myself! Its funny that you mention the ramp. If the OT had had her way our ramp from the backdoor to the garden would have either extended half way down the garden or turned 90 degrees on the patio leaving no room for the patio furniture. We humoured her and they approved the £1500 monstrosity and gave us a 3 month lead time, taking us to the end of the summer -genius. I went on ebay and bought a folding aluminium ramp for £80, got a neighbour to grind the side edges off at the top so the door would open over the ramp in situ and bingo, I am in the garden. Ok the ramp is steeper than recommended but I just tilt the wheelchair seat back when going down. I cancelled the civil engineering project! I don't know your ramp requirements but what I am saying is get the OTs advice but let your judgment decide. OTs would have had me using a full hoist a year ago, bollocks to that. I am still using the standing hoist, its just taken some imagination to achieve it but it has delayed the requirement for a second carer deemed necessary for full hoist operation.

Sarah R link

15/9/2011 03:06:23 am

Hey Chris,
Wow, sorry to hear that things are not going so well. I know it's frustrating enough to deal with the personal physical crap but it's just insane to have no one to really rely on (aside from Polly)!! I'm very surprised to hear that there are not Loan Closets over there. Here in the states, all of the ALS clinics that are run by either the MDA or ALSA have a loan program. They also encourage everyone to donate anything at all that they don't use anymore so it can be loaned to someone else (everything from letter boards and rocker knives to wheelchairs and beds are available). Of course, you have to apply and have a real need (in other words, it's something your insurance won't cover or if it's something ordered that will take a long while to get and you need to borrow one in the meantime), but it's all in place and ready to go. There is also a social worker who helps you apply for private grants, aid, and financial assistance. Maybe this can be part of your personal crusade to get this kind of thing rolling over there... who knows?! Anyways, be careful and quit falling (this is what I hear from everyone everyday now too). Fell at work the other day trying to teach the kids to hop on one foot (left leg must be preparing to crap out too) and I had something in my pocket and it left a nasty bruise on my leg and another one on my pride. Such is life with "__it" (my word for the tosser). Take care,
Sarah