Build-UK Chat Forums

[Emma Deanus]

I am Emma, I am 30 and my Husband Del (34 yrs) was diagnosed with ALS in February 2008. We live in Welwyn Garden City, I am a teacher and Del is a delivery driver. In August last year (I think) I started to feel Del twitching really badly but I couldn't really see the twitching. He was, at the same time, losing power in his right hand. Del is fine at the moment although he has problems with fine motor control in both hands. Del is on Riluzole and vitamins. The reason that I am on this website and he is not is because I don't think he has so much as switched a comnputer on in his life!

[Wayne]

I will put up a new rollcall soon.

Wayne.
_________________
.
All of us could take a lesson from the weather.....It pays no attention to criticism.
.
"Be yourself because everyone else is taken"

[soulmates2uk]

hi my names Gary im 50 on 4th april!!
2003 i went for a full medical as i was about to start a scuba diving buisness teaching it and had 3 years left to go as a detective in police. they discovered muscle wastage in hands (which i hadnt noticed) and sent me for tests, forced to retire as told i was now 'non-operational', tried different jobs and became car salesman for 3 years
diagnosed ALS 2004.gave up work feb 2008 as unable to lift arms above head so couldnt drive, and after crying in the gents when the only way i could do my trousers up was to lay on the floor!
ive got the most understanding wife who had to give up the job she loved in A&E i could wish for who helps me dress every day and now cooks, cleans and does all jobs round house.
for 3 years my main probs been my arms weakening and thinning. my legs have now started to shake and walkings becoming scary as i cant put heel down first and have had few nasty falls.
my anger lays with the goverment as having worked for all my life they refused to assist with garage conversion for ground floor bedroom and shower room unless i could prove i needed it there and then when i was trying to get things done in advance so paid myself, and despite mortgage still having to be paid no help as my pension i paid 11% of my earnings into past 27 years is too high for any benefits to be considered except DLA am i sounding bitter? bloody right i am!!
i take Riluzole but not knowing when my time is due the extra 3 months its giving me seems a waste. quinnine works great on my leg craamps at night. my Dr did prescribe morphine tabs but i try hard not to take it as i end up on a cloud for the day!!

[Mark_G]

Hello everyone

My name is Mark, I’m 48 and single. My first symptoms presented in early spring of 2007 when I noticed some difficulty stretching my arms up to clean the outside windows. As the months went by I found it increasingly tiring to perform physically demanding jobs such as painting the garden fence. About this time I started noticing some shaking in my hands when eating dinner so in the summer I saw my GP as I was getting concerned about losing strength which at this time was predominantly in my left shoulder (couldn’t hold my arm up for long). After a series of blood tests I was referred to a neurologist in early September. Over the next couple of months I had further tests (including blood, lung function, MRI scan, NCS & EMG) and was diagnosed on November 7th 2007.

Since the diagnosis the shoulder girdle has weakened considerably to the point where I am unable to raise or rotate either arm. The shoulders have started to drop (and ache a lot), my hands show visible wasting (difficulty holding things), my wrists are very weak and so are my neck muscles. I’m still up on my feet but my legs are getting thinner too and I can’t walk far these days. My respiratory system has started weakening recently although at the moment I still sleep okay.

I gave up work (ironically at a pharmaceutical company) and driving in March 2008 and stopped cycling in May after a nasty fall. Ouch!

There is no other history of MND in my family. I’m the first and hopefully the last!

The only medication I take at the moment is Riluzole.

I started having home care last October and I now have some really lovely people looking after me. I have good family and supportive friends too. It makes a big difference.

I maintain a blog to record my experiences of living with MND partly for my family & friends but also to help raise awareness of this terrible disease. It keeps my mind active too!

I’ve been dipping in and out of the forum for some time now and really appreciated the wealth of advice and experience that you folks are willing to share. I thought it was high time I actually made my presence known

[Roger]

Hello Mark ~ Welcome to Build-UK and thank you for your contribution. Don't be a stranger, let's all keep in touch and offer one another all help and support we can!
_________________
Support: http://www.everyclick.com . . . the search engine that helps charity!
(roger is helping ‘Motor Neurone Disease Association’ http://www.mndassociation.org





Tribute to Teresa:
http://teresa.holding.muchloved.com

[Pauline]

Hi Pauline here, diagnosed nov 08 symptoms started in april 08. speech not very good i use a lite writer,swallowing becoming more difficult.
i have asthma and coeliac disease, iam taking rilutex and baclofen and three inhalors. i can still walk and move my arms easily.

[Hayleywart]

I'm Hayley, my Mum is Jenny - she is 63 years old and has just been diagnosed with MND. They have not yet told us any more than that just yet but from what I've read here I'd guess it is ALS. In Jan 2009, she started having a lot of pain in her neck and down her right arm. She quickly lost the use of her right arm and hand, and now the left is also very week. She is becoming very unstable when walking, and battes to lift her feet. Her eyelids are becoming more difficult to keep open, and she sometimes involuntarily draws in breath as if she has just had a big fright. Sometimes I think her speech is slower and a little slurred too.

At the moment she is on Baclofen, Paracetamol for pain, Zimovane for sleeping, and Gabapentin. Not sure about the spellings of those!

[bernimac]

hi forgot about roll call but anyways my names berni and my mum was diagnosed janary 2010 with MND ,she has upper .It started before xmas 2009 with speech slurring ,after diagnosed in january her swallow was infected her back bite went ,In june every piece of food had to be blended now its sieved threw a mesh bag she found it handy but very tiring .today 18th August she had her PEG fitted please god this will ease her tiredness an put sum weight back on ,i just wish there was a cure i miss her cheery smiles an chats i should be lucky i still have her it breaks my heart seeing her like this .