Motor neurone disease chat room


Data Collection: Interview Protocol Participants took part in a confidential semi-structured interview that lasted between 15 and 45 min. And it was very, it was very small, and it was only about five minutes from our house. The patient experience of fatigue in motor neurone disease Chris J. Carole attributes fatigue that would otherwise be unexplained to the increased effort of breathing:. One other person whose husband had died said to me briefly 'Oh he just died,' and then that was it, she didn't want to talk about it any more, and that was at a motor neurone disease coffee morning. Motor neurone disease chat room [PUNIQRANDLINE-(au-dating-names.txt)

That personal file was actually really helpful, that you could dip into it. And over the next few months I added sections to it as I found I wanted to know more. I didn't want to contact the local association initially. I wanted to go away and lick my wounds. And we did have a holiday in Tuscany already booked, which was great. It was just what we lady gaga john wayne single. It turned out, totally coincidentally, that I knew her, because she'd been my daughter's singing teacher.

And we started to go to the meetings. I think probably the December meeting was the first meeting that we went to.

We both summoned up our courage and went to a meeting. And it took two or three meetings I suppose really to begin to feel comfortable meeting other people with MND, realising that it strikes everybody so differently and seeing somebody does not necessarily mean that's how you're going to be in a few months' time. But we do appreciate the support we get from the group meetings, both my husband as a carer, meeting other carers, and myself.

And the information that we get, yes, we find that really helpful. So we go regularly now to the meetings. So actually going motor neurone disease chat room to a local, getting some local support?

Yes, yes. You said you summoned up the courage to go along. Tell me about how you were feeling about going beforehand. Very mixed really.

Feeling that we ought to give it a go. I suppose a big thing that I've had to move from is having been a motor neurone disease chat room and having also kind of helped in a voluntary capacity at various places before, I've tended to be the helper. Now I've had to move to the situation where I'm the person being helped. And I think perhaps that was part and parcel of the emotional getting ready for these meetings.


A very jolly chap was chair at the time and he immediately made us feel at ease by just treating us like everybody else.

And I think that's one of the big advantages of the meeting. You are just an ordinary person there, you're not somebody special. But, yes, it was the hurdle of getting over meeting other people with MND.

Which I know and I respect that some people just don't ever want to do. But I have found it helpful rather than unhelpful. What happened at the meeting? The first meeting we went to, the speaker, because there's usually a speaker, happened to be somebody from the head office of the Association, who was talking about Association visitors.

And she did it in a very light-hearted quiz way and a bit like Who Wants to be a Millionaire. So although [my husband] and I, sorry, my husband and I didn't know anything about the visitors at the time, we just joined in with a group and it was good fun.

Motor neurone disease chat room there was coffee and chat and people would say, you know, 'Nice to welcome you, you know. Why are you here? Which one of you's got MND? And, you know, just pleasant really, just friendly company. And that was great. There's an awful lot of help out there if you want to try and use it.

I'm aware that there are number of people around who don't think the Association can do anything to help them, or they think that the Association are too negative and that with a very positive attitude you can beat the disease.

Well I think that's - it's just my personal opinion - I think that's not a very good attitude to find new skype friends. Be positive at all times, try things - and also try and motor neurone disease chat room for the future as well And I should have said earlier regarding newly diagnosed patients is that they should get in contact with the Association as I said, and the head office has a website which is very useful, good starting point I would say.

There are also local branches scattered around the country.

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Motor neurone disease chat room these branches have people called visitors who basically can visit you at your home if you request them to do so and give advice and guidance as to any problems you might be experiencing or might be experiencing in the future. The local branches also can and do provide funding for anything, really, whether it's a stair lift or a motorised scooter or whatever.

I mean they may not be able to pay the whole value but they'd certainly be able to make some sort of contribution and give advice as to where to buy the equipment from. Many people had doubts about meeting other people with MND at social events. Some were put off by the whole idea of group activities.


The only thing that I wouldn't do is to go a group where they're all motor neurone. When I'm in the hospice there is at least one gentlemen, in the day centre, motor neurone disease chat room, who has the same. I don't want to speak to him, not motor neurone disease chat room I don't like him but I don't want an afternoon of people talking about illness but there is no other reason'. I know the worst scenario, I mean I've seen the people on the television and I just hope, dear Tips dating a colombian, that isn't me.

I'm not a day centre person. And I'm, I've got more than enough to amuse at home. What do you call a day centre person? I don't know, but you know how some people love the WI or - well, I'm not that sort of person.

Do you mean like some people like groups? I think people get a comfort, possibly. I mean, I wouldn't want to sit and paint and knit, and that isn't me. And I don't want to know about where they live and what they do. I'm very interested in people, but I don't just want to know their business, that isn't. And I find that sort of thing a very personal.

Have you been in touch with any association for motor neurone disease? We want to try keeping as normal as possible as long as possible. So that's what Jack said when he saw the lift. He said, 'Looking at it makes me feel like an invalid, you know, and I want to carry on as long as possible.

Others were more concerned about how they would cope emotionally with seeing other people with MND, especially those whose symptoms had progressed further than their own. Several said that people living with MND had such varied symptoms and needs that they were unsure what they could learn from each other. One man was also worried it might upset others to see him, because he has PMA which tends to progress more slowly. But some people wanted to encourage others to overcome their worries about this and stressed how supportive and reassuring they found the groups.

Some were surprised that the meetings could be cheerful, not depressing. If somebody who's wanting, thinking about going along to a branch but was perhaps a bit anxious about going what, what was it like when you went at first and what are the benefits of going?

Oh that's a very good question. In the, well probably my first year possibly longer I didn't want to go to any association meetings. Partly because I, mainly I think probably because I didn't want to see people who were poorly and were in a state, situation that I would be in some point in the future.

A sort of a mini denial if you like. And also I was aware that I was going to, you know I would not be typical. I'd, might sound a bit silly but I was a bit conscious motor neurone disease chat room if I'm wandering around claiming I've got motor neurone disease and I'm there for year after year it might upset, upset people who were, weren't, hadn't been given very long to live, you know, one or two years.

I mean that was, a silly idea of mine. And on the same vein it, it has been a little bit shocking on occasion.

Living with motor neurone disease: ‘I hoped I was suffering PTSD’

So we've, we've been going to both branches regularly for the last, I don't know, five or more years. And I can remember one occasion we heard a, two new members, patients talking about their experiences and six months later they were both dead which is a, well oasis app apk bit shocking really. So that's something that's going along to the group is something you had to deal with because you, you get to know people like that.

Having said that one of the branches has at least motor neurone disease chat room people who are in the same situation I'm in. So, well, just proves we're all different and you can't make, shouldn't make generalisations. There's no point in, it's, there's no need not to make friends on the basis that they won't be around in six months time because who, who's to know.

And one of the, the guys is I think had the disease for over twenty years and he's trying to emulate Steven Hawking, I think, but who knows?

I first got involved with the hospice in New Zealand, and I got hooked in by the offer of a free aromatherapy massage, because I'm a sucker for pampering [laughs]. So before I'd really had a chance to think about the fact that it was at a hospice, we were there going to have a little look. And it was a day hospice. And it was very, it was very small, and it was only about five minutes from our house.

And it was lovely, and we met the, the manager there, who was just lovely, and I had a good blub with her for about an hour [laughs] and felt like we'd bonded and just really felt like it was another home. And gradually, and so I'd go for aromatherapy every week and, and then they also did facials and lovely things like that, and then gradually I went along to a support group that they were running on a Tuesday for younger people.

When I say younger [laughs], I was still the youngest at But it wasn't for elderly, which is sometimes the perception of hospice. So they were typically women with breast cancer or some kind of cancer, ranging from late 30s to 50s really. And we'd do, well, we had a sort of coffee mornings to decide what sort of things we'd like to do.

And we did silk painting and making felt, and all sorts of things that I've never done, never had any interest in. But it was lovely. This month MND Ireland is running its annual sponsored silence campaign — Voice4MND — which involves staying silent for just 30 minutes to experience what it would be like to be unable to speak to get involved, email fundraising imnda.

Motor neurone disease chat room registered for the IMND association and receives support and advice whenever it is needed. She continued to work as a reflexologist and bio-energy therapist and took a long-haul trip to Dubai at the end of — but unfortunately this resulted in a nasty chest infection, which caused a setback.

It was a step in the wrong direction and another sign of deterioration. Also, the muscles in my mouth, including my tongue, are very weak so I need to use medical equipment every day and night to keep my chest clear. This takes up a lot of precious time, but is a necessary evil. But while the disease has had a huge impact on her life, she remains positive and cherishes every moment she has with her motor neurone disease chat room.

#TomorrowsDiscoveries: Motor Neuron Disorders – Dr. Charlotte Jane Sumner

However, symptoms can be managed to help the person achieve motor neurone disease chat room best possible quality of life. Currently there are just over people with MND in Ireland.

One person is diagnosed every two days and one person dies every two days. The technology may help children understand emotions and engage in more direct ways with others. Study of novices trying first HIIT session finds exercise more enjoyable with music than podcasts.

We motor neurone disease chat room to protect our eyes as well as our skin from sun damage. Respiratory problems Most people with MND will experience breathing difficulties late in the course of their disease, because their diaphragm and accessory muscles will be affected. Dysphagia difficulty swallowing Weakness of the bulbar muscles tongue, mouth, and throat muscles can lead to swallowing problems. Meet people in knoxville problems Bulbar weakness can also lead to the pooling and drooling of thin saliva, or difficulty clearing thick, tenacious saliva.

Dysarthria Bulbar weakness may lead to slurred or quiet speech. Pain People with MND may experience painusually as a result of muscle cramps or spasticity. Motor neurone disease chat room of choking It is important to provide reassurance to your patient and their loved ones that the cause of death in people with MND is very rarely choking.

Posture and positioning If a person has respiratory problems, they may feel breathless when lying flat. Oxygen Although there are some exceptions, oxygen therapy can have a harmful effect in people with MND, reducing respiratory drive and worsening their condition. Emotional and psychological support People with MND and those close to them often experience considerable psychological and emotional distress. Cognitive change Most people with MND will experience some degree of change in thinking and behaviour in the final stage of the disease.

Early referral to specialist palliative care Because MND can progress rapidly, support from specialist palliative care services should be available as soon as your patient feels it is appropriate for them. Timely access to equipment and support Equipment, support and symptom management should be planned ahead and put in place early, where possible. Palliative or end of life care registers The person should be included on any local palliative or end of life care register, to ensure appropriate support in case of an emergency.

Key points MND can be rapidly progressive and has no cure, so all care and support for people with the condition must be timely and is essentially palliative. Early support from specialist palliative care services can make a huge difference to quality of life. People should be given opportunities to discuss and record preferences for the end of their life, find me a woman to love the need is urgent, their ability to communicate is limited or they find it too tiring.

Symptoms should be managed in line with the wishes of the person with MND to ensure they have the best possible quality of life. Let us know what you think Email your feedback to knowledgezone mariecurie. Disclaimer This information is not intended to replace any training, national or local guidelines, or advice from other health or social care professionals.

Related content. Hydration and nutrition. Communication difficulties. Providing emotional care. She only ran 5 K, mind you there is a very steep and long hill in that, that she could not walk up Hi Kayleigh, Thank you for motor neurone disease chat room so much helpful information in your reply. I can see I need to Hi Ellie, Thank you for all the information you shared in your reply. My understanding of the Deb replied to a thread Hi from Spain in Introduce Yourself.

Hi Puddy, I meant to put I am sorry about your husband, Nigel's diagnosis. Love Debbie x. Thank Kayleigh, Hope you, your husband and family have a lovely weekend too. It's a shame about It's very Ellie replied to a thread update PS Andy. Forgot about the weight issue!

Motor neurone disease chat room [PUNIQRANDLINE-(au-dating-names.txt)