http://forum.mndassociation.org/ The Offical Motor Neurone Disease Association Forum powered by vBulletin. For Information, Discussions and Support and Advice on MND en Wed, 16 May 2012 14:37:07 GMT vBulletin 60 http://forum.mndassociation.org/images/misc/rss.png http://forum.mndassociation.org/ http://forum.mndassociation.org/showthread.php?1405-Tell-Everyone&goto=newpost Wed, 16 May 2012 12:04:08 GMT I was reading a few threads about sufferers being apprehensive about telling family and friends about their condition. WHAT I SAY IS TELL EM... I was reading a few threads about sufferers being apprehensive about telling family and friends about their condition.
WHAT I SAY IS TELL EM ALL,make them aware, lets get MND as well recognised as cancer and alzheimers.Bring it home to those at the top who are dishing out the money for research.This disease is a Killer.

When we have visitors whom we haven't seen for a while and I'm sitting in my chair which i do most days for 12 hours until I am hoisted from my chair to my wheelchair, then into the bedroom and hoisted into bed where I remain in the same position until morning because I cannot turn at all.
They say" you look well" and they're not wrong I do look well. I consider myself lucky in being able to talk and swallow until I try to move, then old crafty MND shows itself as I go to shake hands and my hand drops in my lap as it's too heavy to lift or drinking a cup of tea my wife has to support the cup.I can't do much of anything.
I won't elaborate too much on my condition at present as you reading this know what it's about so I say let's tell everyone
make people aware don't be embarassed it's not our fault.

Warmest Regards as always Bob ]]> Life with MND Robert http://forum.mndassociation.org/showthread.php?1405-Tell-Everyone http://forum.mndassociation.org/showthread.php?1404-Free-Computer-Help&goto=newpost Wed, 16 May 2012 11:50:41 GMT IT Can Help is a registered charity offering free computer help to all people with disabilities. It was set up in 1994 by Ken Stoner, a fellow... IT Can Help is a registered charity offering free computer help to all people with disabilities.
It was set up in 1994 by Ken Stoner, a fellow sufferer of MND. His disability enabled him to recognise the vital importance of computers to disabled people, and as a result he established the IT Can Help network.

Visits are carried out by volunteers, all of whom have been CRB checked. All they ask is that you have someone else with you when the volunteer visits you.

IT Can Help is part of AbilityNet and is funded by the British Computer Society.
It can:
• fix most general computer related problems;
• install and set up hardware, software, internet, email and accessibility settings;
• deal with disability related problems such as:
physical difficulties with using a keyboard or mouse; screen problems for those with sight problems;
• give impartial advice on IT equipment and software to suit your interests and abilities.

If you or any disabled person you know needs IT help please contact us to arrange for assistance.

Our Contact Details
County co-ordinator - Les Fearns Essex@itcanhelp.org.uk
AbilityNet free phone (and Minicom) helpline: 0800 269545

You can also find out about us on our website:
http://www.itcanhelp.org.uk ]]> Off Topic Cara Hope http://forum.mndassociation.org/showthread.php?1404-Free-Computer-Help http://forum.mndassociation.org/showthread.php?1403-Newly-Diagnosed&goto=newpost Wed, 16 May 2012 11:16:44 GMT Hello, My name is Natalie. I am a 41 year old mother of two girls aged 12 1nd 10. I was diagnosed by a neurologist at the end of April with... Hello,

My name is Natalie. I am a 41 year old mother of two girls aged 12 1nd 10. I was diagnosed by a neurologist at the end of April with having MND. I sought a second opinion from another neurologist who says I don't have MND. I don't quite know what to make of it all and where to turn to.

Regards
Natalie ]]> Introduce Yourself Nats http://forum.mndassociation.org/showthread.php?1403-Newly-Diagnosed http://forum.mndassociation.org/showthread.php?1402-New-to-Forum&goto=newpost Tue, 15 May 2012 14:19:25 GMT Hi My name is Kathy and I am new to this forum, although not new to MNDA or ALS. My husband has the disease and it has progressed so quickly.... Hi

My name is Kathy and I am new to this forum, although not new to MNDA or ALS.

My husband has the disease and it has progressed so quickly. First symptom (which was ignored) in August 2009 - a slight slurring of his speech.

Testing commenced in February through to June 2010 where Bulbar Motor Neurone was first diagnosed.

July 2010 confirmation from one of the MND clinics in London and in November last year it was confirmed that he had ALS.

Kerry worked until May last year, but was pushed out from his job because of his communication issues. He now has no communication, no use of his arms and was fitted with a Rigg last August and has no swallow at all.

He has BIPAP, Cough Assist, Sucking Machine and Nebuliser all at home and uses them as and when necessary.

Sorry have rambled on a bit here, but thought it useful for all to know at what stage I am now at with Kerry.

Regards

Kathy ]]> Introduce Yourself Kes2155 http://forum.mndassociation.org/showthread.php?1402-New-to-Forum http://forum.mndassociation.org/showthread.php?1401-MND-ALS-awareness-raising-video-from-the-US&goto=newpost Tue, 15 May 2012 13:48:48 GMT I thought you might like to see this awareness raising video from the US. I certainly like the idea of the using the Sunflower. Has anybody else... I thought you might like to see this awareness raising video from the US. I certainly like the idea of the using the Sunflower. Has anybody else adopted it in the UK? Perhaps we might consider following this lead?

http://www.youtube.com/watch?v=TBvXvOSArNk ]]> Life with MND Roger http://forum.mndassociation.org/showthread.php?1401-MND-ALS-awareness-raising-video-from-the-US http://forum.mndassociation.org/showthread.php?1400-A-cure&goto=newpost Mon, 14 May 2012 22:34:53 GMT Have you seen this . The thread sure makes interesting reading. If you don't want to read all the posting on alstdi just open the link on the first post. It sounds incredible but hopefully it is going to be one size fits all.


http://www.als.net/forum/yaf_postst5...-for-cure.aspx ]]> Research and Trials john http://forum.mndassociation.org/showthread.php?1400-A-cure http://forum.mndassociation.org/showthread.php?1399-kallybram&goto=newpost Mon, 14 May 2012 17:24:20 GMT Hi, I was diagnosed with MND on 1st Feb this year, and am on Riluzole,it does make me feel fatigued and I wondered if there's any herbal/supplement I could take can any one recommend anything,thanks...xxxxxxxxxxxxxxx:: ]]> Introduce Yourself kallybram http://forum.mndassociation.org/showthread.php?1399-kallybram http://forum.mndassociation.org/showthread.php?1398-Why-my-dad-How-can-I-help-him&goto=newpost Mon, 14 May 2012 12:33:44 GMT Hi. My dad was diagnosed with MND last month, after putting off going to the doctors and convincing himself it was just a trapped nerve. My grandad... Hi.
My dad was diagnosed with MND last month, after putting off going to the doctors and convincing himself it was just a trapped nerve. My grandad (his dad) Died of MS about 40 years ago, and his sister (dads aunt) died of MND.
He is still mobile (just) both his legs shake continuously and now his right hand is too (he is an artist and the only thing thats kept him sane is paining) He's always been an outdoor, active type.
Does anyone have any advice on what we can do to keep his life as normal as possible, doctors have estimated hes alreay had MND 2 years, but 6 months ago he was ok, just tired and achey but put this down to being 62.
I just wish there was something I could do to stop him from suffering in the future, he will hate having to have his family look after him, dress him, bath hi, feed him etc.
Many thanks x ]]> Introduce Yourself angelgreeneyes http://forum.mndassociation.org/showthread.php?1398-Why-my-dad-How-can-I-help-him http://forum.mndassociation.org/showthread.php?1397-mens-clothing-ideas&goto=newpost Sun, 13 May 2012 13:15:04 GMT could anyone offer me any advice on the best choice for trousers for my brother whos 39 and has MND, his legs are now much weaker and he is unable to... could anyone offer me any advice on the best choice for trousers for my brother whos 39 and has MND, his legs are now much weaker and he is unable to stand so hes using his wheelchair. the problem we are finding is when he needs to use his urine bottle in the sitting position. at the moment he wears jogging bottoms. i just wondered if anyone out there had any tips on the best solution. as both jogging bottoms and jeans seem quite awkward and fiddly for him. ]]> slim http://forum.mndassociation.org/showthread.php?1397-mens-clothing-ideas http://forum.mndassociation.org/showthread.php?1396-PEG-update&goto=newpost Sun, 13 May 2012 12:19:17 GMT Hello everybody, thought I would update you all on how things were going with my dad who was admitted to Stoke hospital on 10/05/2012 for the PEG... Hello everybody, thought I would update you all on how things were going with my dad who was admitted to Stoke hospital on 10/05/2012 for the PEG insertion.
10/05/2012 - call to the bed manager who tells us to come in at 6pm and his bed will be ready.We arrive at 6pm only to be waiting 6 hours and 30 minutes for a bed, the family leave at 1.15am when he is settled.
11/05/2012 - the day of the PEG insertion, the op is booked for 2.30pm. Although staff tell you visiting hours are between 2.30pm - 8pm, they allow you to come and go all day if you want to, I arrived at the hospital at 6.30am on 11/05/2012 and spent my time trying to distract my dad while his anxiety levels were through the roof, 4 medical professionals had to explain the procedure to him as he was so nervous about gagging. Everybody was really good in trying to relax him and Ellen the specialist was brilliant with him - honest but reassuring.
11/05/2012 - My dad went down to theatre at 4.19pm and was out at 4.39pm. Very quick and he came out snoring his head off (this may be because I requested to give him as much sedation as possible)!!! He then woke around 5.30pm and was quite drowsy, we visited for a few hours and went home later that night. Between 11pm - 12pm a feed was put through and this went fine.
12/05/2012 - My dad was in a lot of pain and discomfort the following day, however the nurse had warned him that it would feel tender for a few days after. There was no bleeding so the dressing could be taken off today. My dad had to be topped up with painkillers and needed a rest. Family got home at 10pm and I called the ward at 11pm to ensure they were keeping an eye on him!
TODAY - my dad has just been informed by Dr Hussain that he can be discharged - yay! I am at home today but will be going to my parents to ensure he has everything he needs for his return, my mom and brother have been with my dad since early this morning. The nurses will train them how to use the syringe and pump for the PEG and he can then go home.

Overall the experience has not been as bad as I expected, my dad also said the procedure wasnt as bad as he expected, he felt scratches at the back of the throat when the camera went down but apart from that not too bad. I can honestly say the nursing staff have been excellent, they are attentive and understanding. They did not mind family coming and going at all hours of the day and even fed and watered us too!! I could type forever about how wonderful they were, the admission was the only critism.

Thanks again for listening and reassuring me last week - anyone who is due to have a PEG please feel free to ask away xx ]]> Life with MND paris http://forum.mndassociation.org/showthread.php?1396-PEG-update http://forum.mndassociation.org/showthread.php?1395-letter-from-gordon&goto=newpost Thu, 10 May 2012 17:10:56 GMT hy.everyone.im.gordon.i.was.diagnosed.may.2011.on.hindsight.i.had.mnd.a.year.earlier.but.was.being.treated.for.what.i.thought.was.cramps.and.arthritis... hy.everyone.im.gordon.i.was.diagnosed.may.2011.on. hindsight.i.had.mnd.a.year.earlier.but.was.being.t reated.for.what.i.thought.was.cramps.and.arthritis .but.while.being.examained.for.something.else.i.ha d.what.i.now.no.was.muscle.spasms.not.cramps.and.m y.arthritis.was.muscle.deterioration.i.also.someti mes.have.shortage.of.breath.i.also.get.twiching.in .my.shoulders.arms.and.legs.but.by.meeting.people. and.reading.people;s.letters.i.consider.myself.for tunate.its.nice.to.meet.you.all.g. ]]> Introduce Yourself gordon http://forum.mndassociation.org/showthread.php?1395-letter-from-gordon http://forum.mndassociation.org/showthread.php?1394-Advice-Needed-for-care&goto=newpost Wed, 09 May 2012 12:28:07 GMT Hello, My Grandad was diagnosed 3 years ago and over the last year the illness has really affected him. My Grandma looks after my Grandad 24... Hello,

My Grandad was diagnosed 3 years ago and over the last year the illness has really affected him. My Grandma looks after my Grandad 24 hours a day and is currently struggling to cope but wont admit it and wont accept any help.

The only services she is currently accepting is for my Grandad to go to a hospice twice a week (very reluctant and if she can find an excue for him not to go she will).

Over the past 6 months we have set care up to assist on several occasions. This has been turned down every time.

My Grandma cant see it but the effect of her not accepting outside help is causing arguments with the family because we are all frustrated that she wont accept help.

Has anyone been in a similar situation and do you have any tips on how to try and get the care needed set up?

Thanks
Jason ]]> For Carers JasonStevenson http://forum.mndassociation.org/showthread.php?1394-Advice-Needed-for-care http://forum.mndassociation.org/showthread.php?1393-Hello&goto=newpost Wed, 09 May 2012 08:48:11 GMT My husband was diagnosed in 2009 a few days before his 49th birthday until now i have been unable to look at sites like this as i was too afraid of... My husband was diagnosed in 2009 a few days before his 49th birthday until now i have been unable to look at sites like this as i was too afraid of what i might read i am 44 we have 2 kids 14 and 19. We have experienced a lot of what i am reading on here and i now feel if i would like to help others and maybe others could help us.
I read a lot about the children and how you tell them or do you tell them. We have found that answering questions honestly no matter how difficult has helped our children i wouldnt go volounteering information to them but always be honest with them.
My husband is now quite poorly no speech cannot eat hes gone from being very strong and accepting the disease to being very angry and very upset.
I am devastated i cry most days and so wish i could be stronger but i love him so much and i am so very very sad and frightened. We have encountered lots of problems on our journey from care to benefits if i can help anyone in any way please get in touch i know how frightening and heartbreaking this is. ]]> Introduce Yourself Hedi http://forum.mndassociation.org/showthread.php?1393-Hello http://forum.mndassociation.org/showthread.php?1392-Means-test-for-house-alterations&goto=newpost Tue, 08 May 2012 20:46:20 GMT I feel awful posting about financial matters but wonder if anyone can advise me on this. I have reduced my working hours to help meet my husband's care needs and wonder if my salary is taken into account for the means test they use for home adaptations. This could influence how many hours I work. can any one help?
Magic ]]> Finances magic http://forum.mndassociation.org/showthread.php?1392-Means-test-for-house-alterations http://forum.mndassociation.org/showthread.php?1391-I-am-so-sad&goto=newpost Tue, 08 May 2012 19:20:23 GMT Hello Everyone, My name is Nikki, and I have recently found out the my fiance Tim has just been diagnosed with MND. The 10th of Jan 2012, we... Hello Everyone,

My name is Nikki, and I have recently found out the my fiance Tim has just been diagnosed with MND.

The 10th of Jan 2012, we will never forget, although I did have my suspicions as I had been online due to worrying signs that Tim was showing, but nothing prepares you to actually hear the specialist say it. Over the past few months we have had many tears together, and then we decided that we were going to get married this June and not wait. It has been a lot of fun planning the wedding and a huge distraction for us both, but Tim will not really talk about his condition, and when he does open up he is so angry with everything, and its so upsetting. I am trying to be real strong for him, but sometimes I feel so alone. I have asked him if he would like to talk to others in a similar situation, but he wont. I know that he has not accepted it, and says he never will. I am running out of things to say to encourage him, and I am feeling mentally exhausted although he has only been diagnosed since January 2012. I am trying to keep focused on the wedding and the positives, but its hard, ]]> Introduce Yourself Angelart http://forum.mndassociation.org/showthread.php?1391-I-am-so-sad