Build-UK Chat Forums

[Joan]

Hi I am still trying to get round this website and just realised that I haven't added myself to the roll call.

My name is Joan, I am married, 55yrs old and I'm from Australia. I was first diagnosed in 1998, but have had symptoms for a while. Started with foot drop, next onto left arm and hand, now confirmed right arm/hand. Shoulder drop makes me sooo grumpy as it pulls my neck muscles, ouch! Walking is not good, have back-up walking stick and electric wheelchair. Now having problems with back. Extremely tired but have an excellent support family.

Life goes on.

[MartinH]

Hi Joan

Spotted your location --- sunny Adelaide! I lived there in 1973 - 1975, beautiful place, many happy memories. I stayed in Henley Beach amongst other places, did several jobs including shoe salesman in Myers of Rundle Street and a pharmacy assistant in the Queen Elizabeth Hospital .

I'm 57, my wife Carole is 56 and was diagnosed in September 2005, she started with foot drop in her right leg. She can now only walk short distances indoors with great difficulty using a frame. As you say, life goes on.

All the very best to you and yours (and everyone else on this forum of course!).
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dum spiro, spero

[Karen]

I am Karen, 53 years old; diagnosed October 06; first symptoms - legs feeling funny, then gradual footdrop June 05. Had to give up driving Oct 06 - a real wrench.

Speech fine; breathing fine; problems restricted to legs only at the moment but arms beginning to get the odd ache, cramps in fingers etc. Ominous!

No wasting - I thought the one benefit might be losing a bit of weight off my legs but much to my annoyance my legs have expanded rather than shrunk!

Can walk round house with stick with difficulty. Stairlift. Use 2 scooters (1 for walks, 1 for shopping) and portable wheelchair. Will soon need electric wheelchair.

Medications. Riluzole, Vitamin B12, Magnesium

[Stuart]

Stuart, 63 yrs old, first symptoms towards the end of 1987, diagnosed September 1997. Still have some use of arms, hands and legs but, am confined to a wheelchair. Voice now very slurred, swallowing ok if I concentrate. Breathing difficult when laying down. Married to Jean 40 years, 3 sons, 4 grandchildren, 5th due next month. Home, Llantwit Major, Vale of Glamorgan.

Medication; Sertraline 50mg, Diazepan 2mg 2x per day, Co-Codamol eff tabs 30mg upto 8 per 24 hrs (Arthritis), Baclofen 5mg/ml x2 daily, Metformin tabs 850mg x 2 daily (Diabetes).

Stuart.
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Dont just live with MND, MAKE IT LIVE WITH YOU. Diagnosed, September, 1997.

[CarlingBlonde]

I've been watching the forums for the past 6 months, never knowing whether to post or not - my Dad, Mick was diagnosed on 24 August 2006 with ALS, unfortunately we lost him last night Thursday 8 March 2007 to MND. First symptoms were loss of power in his left arm and gradual weakening of the rest of his limbs. I don't think my Dad ever started fighting the disease and would have continued to work on building sites if Tom Britton at Kings had not told him to give it up - he had been a builder for nearly 50 years and couldn't bear the thought of a) not working b) being reliant on other people for his every need and wish - he remained to the end a strong and proud man who I already loved and respected but have grown to love and respect even more since his diagnosis. All I can hope for everyone who accesses this website is that if they are living with MND that they will be around when they find a cure and to the friends and family sharing the burden of MND is that they find the inner strength to carry on through the deep dark day and appreciate the good.

Michael Mason
21/11/1943 - 08/03/2007

[sandyk]

Hi all,

My name is Sandy and we have just (yesterday) found out that my Father-in-Law has MND. We are now just waiting to find out more - hopefully soon. I have joined as i want to help my wife and the rest of the family come to terms with what is happening. I will no doubt be on here frequently, asking lots of questions!

[bob_als]

BOB, MALE 33,married , blessed with one 20 months old daughter
symptoms onset Jan 05, Dx Sep 05
symptoms started with right shoulder & neck pain than fasciculations in right arm .
right arm & right leg became very weak but functional
Independent though have difficulties cant run but can walk left drving recently .

medicine Riluzole, Ayurvedic medicines (Started just 15 days before)

Stem cell (Adult Stem Cell) didn't worked for me.

Yoga Exercises(light movement exercises only) Pranayam (breathing exercises) really effective & very Helpfull

Attitude to be honest sometimes angry at my condition
But inside of my heart Very Positive & confident of defeating this desease.

[Ian]

Hello All,

Now that my grading is 'regular' I thought I had better give a bit about me.

Ian, age 53, Married to Carol

First aware of symptoms Boxing Day 2005. Walking back from the pub was a real effort at 2.4 miles. I put it down to 'excess' enjoyment, but it became more noticeable in the following weeks.

My GP had suspicions early on when I eventually visited and as a result diagnosed two months later on 8th Sept 06 after referral to specialists. He has 2 others on his books, a cluster you may ask!

On reflection though, a few random episodes of fatigue had been occurring for around a year before that! Probably even longer.
Can't walk very well at all now, just a few steps and at the point of changing to 2 elbow crutches from one. Luckily I can use a wee scooter around the house.

Currently on Riluzole and supplimentary drinks. The latter are superb at stabilising me in those 'worn out' moments.

My only major problem is frustration. I was a 'dooer'. DIY and anything that needed dooing. Now I have to get people in, but I still want to do!

WARNING - Do not use a Chain Saw whilst sitting down! - I tried, but it does not work well. Fortunately I did not get hurt. I have to concede to a lot of help now and its very frustrating. FOR ME!
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Why am I the only person that does not moan about things....Its not fair!

[steve 6]

HI ALL

MOVED TO FRANCE IN FEB 06 ORIGINALLY FROM NEWCASTLE UPON TYNE, WITH WIFE AND KIDS NOW 8,6 AND 4. FIRST SIGNS JUNE O6 AND DXD JAN 07 WITH ALS. NOW HAVE CARER FOR BATHROOM DUTIES AND GETTING DRESSED. SPEECH SLURRED, WEAKNESS IN ARMS LEGS HANDS, AND UNABLE TO WALK UNAIDED. HAVE A ELECTRIC WHEELCHAIR FOR OUTSIDE WHICH IS A GODSEND. AT THE MOMENT I NEED MY FOOD CUT UP BUT AM STILL ABLE TO EAT MOST FOODS. BREATHING OK. ON RILUTEK AND ON A TRIAL FOR ONO-2506 ALTHOUGH I DONT FEEL ANY BENIFIT WITH THEM. OH I AM 42 AND REMAIN POSITIVE. WAS A KEEN SPORTSMAN ESPECIALLY FOOTBALL ( I HAVE SEEN SOME REPORTS AND DO NOT THINK THAT WAS RELATED ) AND I ENJOY WATCHING MOST SPORTS.

LIFE IS LIKE A BOX OF CHOCOLATES

[CathyT]

Hi everyone. My name is Cathy, I'm nearly 59 and I was diagnosed in May 2006. I've recently moved to Scotland from London. I live with my husband, Michael and we have two adult daughters, one lives in London and the other in Devon. My Mum lives in Scotland as well, unfortunately not near us.

My symptoms started in my left foot. Now I only have the use of my right arm. I use an electric wheelchair and feel as though I spend my life waiting - for other people to do things for me!! Still, with the total support of my family I muddle through each day.

I may never post another message, this was just to introduce myself but I shall be watching the posts with interest.

[MJA]

HELLO,-only just found this post.
my name is mark 42 years old married to jo with one cat-samson
i was diagnosed with mnd on friday 13 2004 at lri and then had a second opinion at the royal hallamshire in sheffield and go there to clinic.
my first symptom was drop foot and can no longer walk or stand.
up until 2004 i used to compete in trailquests on my mountain bike and swam 100 lengths twice a week but now spend most days fishing,only possible using my 4 wheel mini crosser scooter.looking forward to making new friends on this forum.CARPE-DIEM

[Mark]

I have been a member since late 2006 but never added to roll call, My name is Mark now 42, Married with two children 2 and 7 and live in Suffolk. I was Diagnosed in Nov 06, but had symptoms well over a year before. Started with foot drop in left foot and went to see doctor when struggling to change gear on motor bike. I am now in Wheelchair full time and can not walk or stand and weak in both arms particularly my left arms. I have had an amazing year since being diagnosed, learnt alot about myself, friendship and family and consider myself fortunate in this respect. Now looking to employ carer and entering a more difficult period but hope to maintain same courage as I have this last year. Lets see...

[Bluepete]

Bluepete still engoying life
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It's not the years in your life that count. It's the life in your years.

[IanB]

Hi there. I'm a new member so I'll introduce myself. I've been lurking on this site for a few days now, so I've now registered and here I am.

I've been living around MND for quite a while. My Dad was diagnosed with ALS in 1992 and died of it 2 years later aged 73. My aunt (Dad's sister) died some years earlier. MND was only really suspected in her last weeks, but it was evident she had the Bulbar Palsy version.

I'm 56 years old. My symptoms first appeared in late 2003 when I noticed my left foot beginning to drop. I started seeing a neurologist in early 2004 and he did some tests, but no diagnosis was given. By early 2006, my walking was getting more unsteady. My left leg and knee were substantially weakening and I was using a drop foot brace and stick to stop me tripping over. I noticed that my right foot was beginning to drop, so I went back to the neurologist. Eventually after more tests I was diagnosed with ALS in November 2006, but I'd already guessed I had it months before, since my symptoms were developing just like my Dad's but at a slower rate.

Things have developed now such that I have braces on both feet. I can only walk a few yards with crutches. I use an electric wheelchair in and around the house, and a manual chair when we are out and about. My arms are beginning to slightly weaken, although I can still use my hands OK, move myself round on my arms, and I'm still driving OK on hand controls. Still working from home too.

I see it as an advantage to have seen my Dad succumb to this, since I know exactly how this is going to affect me and my wife. The good thing is that because I'm younger, it does seem to be developing slower.

I will do whatever it takes to keep doing what I can. I'm an engineer, and I have to confess to being interested in some of the disability gadgets out there. I intend to keep one step ahead of this, since what I don't want to do is to suddenly realise I can't do something, which with a bit of forsight I could have prepared for.

There are some great tips on this site, and I've read extensively about MND, so I intend to keep on learning and living. I may get brassed off occasionally when I can't do simple DIY jobs, but I'm very positive about all this really. My family are a great support.

Why let a little problem like this spoil my life!

I look forward to reading and contributing to this site and getting to know you all.

Cheers,
IanB

[diane]

Ian, "little problem!!" I think I love you already! (dont know for sure though wayne!) thats what I like to hear Ian, positivity welcome to build, it will take you quite a while to get through the posts, but you will learn a hell of a lot!!! brush mnd under the carpet! If you have laminate flooring, put it down the toilet!! [/img]
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"ITS NOT THE MEN IN MY LIFE! ITS THE LIFE IN MY MEN!!"