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Steve
24th June 2014, 15:36
The association are doing great things in raising awareness among the general public. Does anyone else find there is a lack of awareness among carers and health care professionals?

I realised my care team had a massive gap in knowledge when I heard them guessing why I was ill. One suggested a stroke, the other MS. When I said MND it didn't register. One or two admitted they read up on it when they found out.

I have had one or two funny moments, I have a 9 month old and one lady said I can watch out when he is a teenager. I am really laid back and just nod and smile.

It just illustrates there is a lot of work still to be done.

Ellie
24th June 2014, 16:28
At least they had the decency to read up about it, Steve!
MND is relatively rare, so a lot of carers and HCPs have never come across it. My GP never had a patient with MND before and that’s not necessarily a bad thing, as he can think outside of the box, as he hasn’t been indoctrinated in the traditional MND ways. There is a guide for carers on the main site, which may be useful.
I got a “Get Well Soon” card from a friend after I told her I had MND!
Take care,
Ellie.

pete
24th June 2014, 17:12
Hi Ellie ,,Steve ,
Yes it's the same at our surgery, no one really sure how bad it could be, having said that now some years on they do book me a home visit now, I was thinking that the move to a new home would be a bit of a stressful time, but all went very smoothly no major upsets apart from managing to loose so many things just in two hundred yards ??, that must be some kind of record, anyway waking up a week ago I was in agony ,won't go into details on the forum ,but if you google Orchitis you will get the picture, I had never heard of it and I have to say it is the most painful affliction I have ever known sitting mainly now don't help and standing up ain't a lot better, the doc came out examined the site and waited for the usual diagnosis ,it's to do with MND as everything else seems to get tagged as being related,surprisingly it wasn't !!, but the liquid anti biotics don't seemed to have worked , so now a ultrasound scan ,having MND has certainly made things happen much quicker at getting tests done so maybe it is the single thing that's good about having a terminal disease ,at least it has improved the understanding of MND at our surgery ,Really looking forward to the scan!!!.

Pete

Durwood
24th June 2014, 17:23
My partner was diagnosed three weeks, last week we visited our GP and the first thing he said was "..you probably know about this then I do", which I found refreshingly honest of him. His main response was "tell me what you need and I'll help you get it".

Ellie
24th June 2014, 18:16
Ouch Pete! Try a wrapped ice pack xx

Terry
24th June 2014, 19:12
My eye's are watering, Pete mate;

Not through laughter or sadness. As Ellie says, Ouch. Just hope it's better soon.

Terry

Joan
24th June 2014, 19:31
Neither of the GPs at my surgery have seen MND, but the result is they are really interested and very helpful. The person who is most clued up and on the ball is the Communilty Matron, she's brilliant and a force to be reckoned with! I find that acquaintencies who never visited before now want to, am I cynical suspecting curiolsilty? I find I put people off, I would rather be out and doing while i can not sitting entertaining. True friends are different, very welcome! Joan

gerald
24th June 2014, 23:10
Hi all totally agree with whats said on this post i get very animated when christine goes into care/respite its as if i dont totally trust them. I am not saying that only i can look after her thats not the case i just feel i have to spell everything out for them to follow and yet they still dont get it' more still needs to be done.

Gerald

DaiTheDragon
24th June 2014, 23:35
There are 4 Dr's in my surgery and not one of them has treated a MND patient. In fact I was the one that told them I had MND after Googling my symptoms. That was a year ago and since then 2 more patients have been diagnosed. In I hope that I contributed to the Dr's taking more notice of patients symptoms.

David

ccinjersey
25th June 2014, 00:43
Oh a triple big Ouch Pete! I read if you can immerse yourself in a warm Epsom salt bath it can relieve some pain and swelling . Lots of home remedy herbs were suggested as well. Hope you get some serious relief soon.


I agree with you Steve on the lack of awareness in general amongst healthcare professional and the public. Until this illness touched my life I too really was not aware of just how debilitating and devastating it is. In the US we call it Lou Gehrig disease. If you say als, most people don’t know what your talking about, and if you say mnd they are really clueless. We all seem to know MS, Parkinson’s here, but als really remains in the dark to most. Most all of my family and friends when told of my dear friend’s diagnosis had know idea what it was or the inevitable results of it, and neither did I until I went online.

Our bigger Hospitals have ALS Centers. Neurologist and staff that just specialize in mnd. Our regular general doctors and neurologist are really not equipped to take on a patient with mnd. My friend was immediately referred to the als specialist in order to get the necessary team support.

The Often Awesome documentary series tries to bring awareness to the public, but you have to be informed by someone about it otherwise no one knows it’s out there. It should be a required series for the medical profession to watch, especially those working in hospitals and nursing homes. Really a shame, it should have been showcased on the major cable channels. It really would have had people talking and so much more aware, bringing this illness to the forefront where it belongs.

CCxox

Lycanthrope
25th June 2014, 01:14
Hi, I think the awareness campaign is really important and much needed. My dad's OT admitted she didn't really know anything about MND, and to be honest she has been no help at all. Shame she didn't follow the example of your carers Steve and make the effort to read up about it. I also had someone say upon hearing my dad had MND, 'well at least it's nothing life threatening'. Sometimes you just have to smile. Hope you're soon feeling more comfortable Pete.

Becky x

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