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G60dubber
29th March 2011, 00:20
I'm fairly newly diagnosed and when you look at the 'stats' things seem rather bleak. I appreciate these are means etc but I would be interested to know how long members have been surviving this disease as I'm sure there's many who are longer than 3-5 years. I've seen on 'Patients like me' that the dx date is recorded in the profile and is viewable, is this something that could be done on here so we can get a better idea of peoples length of experience etc?
What do you think?

Robyn Copley-Hirst
29th March 2011, 14:25
Hi Adie,

This is something I've given a bit of thought to. Anyone can put information into their profile as things stand... but it is not a requested bit of info, or a specific field/box that can be filled in.

The only info we currently request is a date of birth - just to ensure people aren't too young.

We also have a lot of people on the forum who might be a carer, friend or family member of someone with MND and will not have a dx date at all. To try and make everyone feel at home here I've left things as they are... but if others like Adie's suggestion let us know as it is something I can do quite easily.

What does everyone else think?

Robyn

hilary walklett
29th March 2011, 15:37
I don't have any strong views for myself, but I can understand that some people would not wish to have it on their profile. On the whole, my instinct os to leave things as they are, allowing people to put the info into their prof. or in their signature line if they wish.
For what it's worth, I was diagnosed in 1995 and carried on working until 2004, and only stopped full-time work bacuase I had reached 65! I have been doing odd bits of work until very recently. My brother, who had rthe same as me, was diagnosed in about 1971 or 2, I think, and didn't pass on until 2004. But my condition is very rare.

Hilary

jadedjohn
29th March 2011, 16:55
well i was formally diagnosed in october 2010 age 42. im retiring on Thursday! lifes too short with MND to worry about work - for me its quality of life that counts now.

john

Jeannie
29th March 2011, 19:20
Hi all, I don't think people would have a problem with displaying their diagnosis date as most people freely state how long they have had the illness, even if they did have a problem with it I'm sure it could be made as an optional feature. I've been living with ALS for nearly 11 years.

Hi Hilary, Glad to hear you're doing well. I wasn't aware that Kennedy's disease was a motor neurone disease but see it falls under Progressive Muscular Atrophy (PMA), they say you learn something new every day ;-)

hilary walklett
30th March 2011, 16:10
Hi Hilary, Glad to hear you're doing well. I wasn't aware that Kennedy's disease was a motor neurone disease but see it falls under Progressive Muscular Atrophy (PMA), they say you learn something new every day ;-)

Yep, Jeannie - if you're going to have this horrible thing, you may as well have something a bit exclusive! lol
Having said that I had stopped working now, last night I had a phone call from a well-established class that I have taught before, asking if I would do two evening classes of five weeks each this autumn! So there's still life in the old dog.

Hilary

xbecky07x
30th March 2011, 18:55
my dad was dx dec 2008 x

Z3 Driver
30th March 2011, 21:59
Well i was diagnosed ( ALS ) on 31 Dec 2010 and im 41. The Prof said i could have had it a year.
Still working but my work has been tailored now to suit my ability, my right arm,hand and shoulder really weak now.
Im an Engineer Surveyor and ironically find my job sometimes involves, inspecting / testing , stairlifts and patient hoists.

Vane
31st March 2011, 07:01
Hi there, Just to add to the thread, I was diagnosed in December 2010 with symptoms that started in May 2010 with cramping and motor weakness in my left leg. My arms are weak but I am thankfully still able to use them at the moment. However my legs are almost gone and my trunk only holds me up for a about a quarter of a minute. Im not sure if I am a fast progresser or not? but I am hoping and wishing for a plateau that might be round the corner. I also had an inexplicable muscle fatigue disorder for many years prior to this which the consultants are dividied on ie. one believes that this is purely coincidental and another thinks it may have been MND hanging about. I do find it interesting to know when people are diagnosed and how they progress, partly because I want to believe that we are all different and that the medics really can only work on average statistics.

Ironically too, just before diagnosis I was designing gardens for people with severe disability and having meetings with some of the OTs that I now deal with from this side of the fence! Life is sometimes surreal!.
vanessa

Chris
31st March 2011, 10:02
Diagnosed July 8th 2010, presumably ALS as at the time i didnt want know anything more about it.

Robyn Copley-Hirst
31st March 2011, 11:57
Hi All,

There are loads of you adding dates to this so I've created a new field in your profiles. It won't appear next to each and every post you make on the forum, but it will be there, if you wish to add a dx date, alongside your occupation, biography, location...

if you want to add it to your profile click the 'My Profile' link right at the top of the page to add it.

Hope this helps,

Robyn

Michaeldw
18th April 2011, 17:20
Hi, I was dx summer 2010 but it seems it may have started around March 2008 when my right hand started to lose strength.

Michael

sarahezekiel
18th April 2011, 19:39
I was diagnosed in April 2000. It's my 11 year anniversary right now. I don't know whether to laugh or cry. This time of year always upsets me but at least I'm still here for my children.

soniamm
18th April 2011, 21:53
My son was dx in April 2010, has weak arms and a weak left leg. Coping well still mobile.

Sonia

patrick joyce
18th April 2011, 21:58
DX March 19th 2008. That date just seems to stick in my memory for some reason....

computatec
18th April 2011, 22:07
I was dxd with ALS October 14th, 2010. Looking back, I am sure my first symptoms appeared in October 2009.

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