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Thread: First visit

  1. #11
    Forum Member Lynne K's Avatar
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    Hi Polly. A very warm welcome for you and your husband (if he has the courage to read the forum comments). I'm very sorry that you've had to join us. As everybody has already said, an MND diagnosis is a huge shock for everybody to take. I hope that your local services ie OT (Occupational Therapist), physio, speech therapist and wheelchair services give your husband appropriate support. When your husband feels like talking about his future please bring up the subject of voice banking. I don't know how slurred his voice is, so as soon as you can get a speech therapy appointment so options can be discussed. The soonest he can is best for voice banking. I send an electronic hug. Look after yourself. I don't say that unthinkingly. I mean it whole heartedly. It's hard for us who have MND, but we know that our loved ones carry a heavy burden too. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  2. #12
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    Hi Lynne

    I very much doubt that my husband will look at the forum. We all deal with problems in our own way and some people want to know more than others. We have a lovely local speech therapist already but he thinks someone more experienced with MND will take over. Not sure whether voice banking will be an option, but I’m hoping transfer to local therapists will happen ASAP.

  3. #13
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    Welcome Polly, you will find lots of support on here x

  4. #14
    Forum Member Lynne K's Avatar
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    Ok Polly. Good luck with finding a more experienced speech therapist. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  5. #15
    Forum Member Barry52's Avatar
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    Quote Originally Posted by Polly View Post
    Hi Lynne

    I very much doubt that my husband will look at the forum. We all deal with problems in our own way and some people want to know more than others. We have a lovely local speech therapist already but he thinks someone more experienced with MND will take over. Not sure whether voice banking will be an option, but I’m hoping transfer to local therapists will happen ASAP.
    Hello again Polly,

    You mentioned your husband being unlikely to visit the forum. This is quite common for people recently diagnosed. Depending on where you live and the clinic treating your husband there is a new treatment called acceptance therapy offered by numerous MND clinics throughout the country. I am connected to the advisory steering group and we have just held a meeting today which reported good feedback from participants. It is now recognised that the psychological impact of diagnosis of MND needs addressing so this treatment is being offered at many clinics throughout the country.

    You also mentioned the pressure for your husband to have a peg fitted. This is a personal choice and yes if disease progression is rapid then it is sound advice but don’t rush into all the decisions too early.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  6. #16
    Hi Polly

    Welcome to this marvellous community. You'll understand I'm sure when I say I'm really sorry you've found us, but I hope the Forum will be a source of information and comfort - as it has been to me.

    This is a link to a brief description of ACT therapy that is at the heart of the COMMEND project.

    https://soundcloud.com/commend-ucl/i...line-materials

    I wouldn't bother too much about it now - but just to remember it's there. What has emerged from the study so far is that it seems more difficult to engage men in therapy than women. No surprise there then!

    Big hug

    Doug

  7. #17
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    Hi Polly,

    We experienced exactly the same overwhelming information / advice about what interventions might be necessary. The PEG was the first and the most consistently advised intervention and every time we see anyone that is what they mention, almost obsessively no matter what denomination - doctor / nurse / therapist - they are.. Hubby was diagnosed in January although we had been going to the doctor since August last year and the symptoms started at the end of the previous year - December 2017 (I ended up making the doctors appointment in the end as he wouldnít). He has been resisting the idea of a PEG as he loves his food and now that he can have a few more calories to keep his energy up, he is enjoying food even more with puddings every day instead of once a week treat. I apparently am enjoying the puddings too and donít seem to be putting any weight on either, probably due to having to do most things now that hubby used to do. He is slowly coming around to the fact that it may be a necessary intervention, but isnít ready even yet. We have been told that there is around a 10 week waiting list for the procedure and he is feeling the pressure to decide. Itís not easy is it when everyone else knows whatís going on and what you will need but you are still coming to terms with the shocking diagnosis? I feel for you, Polly!

    Well, thank you for being part of this wonderful forum and I hope you will find lots of useful information here to help you and your husband.

    Wailywoo x

  8. #18
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    Wailywoo, I totally get that it is easier to fit a PEG early, before it is actually needed. It’s just that I did feel quite intimidated, especially as it wasn’t a one-to-one conversation, as there were several people in the room. They said if you have it early, it’s a day case. Later on you might be in hospital for 2 weeks. Or even have to go to a specialist hospital 50 miles away. No wonder my poor husband didn’t want to think about it! And at the moment, he’s not having problems swallowing, has a good appetite and has even put on a couple of pounds, so he can’t see the need.

    We are in the process of being referred to local community therapists, and I’m hoping speaking to them individually in our own home will make it easier for him to accept what is happening.

  9. #19
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    Hi Polly, I have had the same thing about the peg. The very young dietician was trying to say it was the best thing since sliced bread. I don't think people should be forced into anything. I felt intimidated too.
    Take care Sheila.

  10. #20
    Forum Member Gillette's Avatar
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    Mar 2019
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    Hi Polly, hi Wailywoo,

    I was diagnosed in November 2018 and, although I accepted the diagnosis, I was in a very dark place inside my head. I decided that I didn't want any invasive or life sustaining treatments. However, three weeks ago, I found myself on here reading about PEGs. The following day my Speech and Language Therapist came to see me. I realised I had changed my mind about having a PEG and told her so.

    I am sharing this with you to show that your respective husbands may have a change of heart, especially when they have become more familiar with being a person with MND. Obviously, they may not change their minds, but 'no' today doesn't necessarily mean 'no' tomorrow.

    Sending hugs to you both.
    Dina


    Trying to keep positive, but not always managing.

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