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Thread: So quick - anger, relief and regrets. (Bulbar)

  1. #21
    Forum Member Aklynne's Avatar
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    Quote Originally Posted by Terry View Post
    Hi Aklynne and welcome to the forum;

    Sorry to hear what you are all going through. I hope you have support for her, especially a SALT to help her to communicate.

    Best wishes, Terry
    Hi Terry
    Until she has been referred for Speech and Language therapy there is no support. We haven't had anything. This has been going on since February when she was sent to ENT after she said her throat hurt and her speech was slurred and slow. I think because of the way my parents are, they don't complain or push, however, she is going downhill now and I fear it will be too late. She cannot speak now and we cant understand her now either. She constantly tries to clear her throat and she is so tired. The 2 tests EMG (?) and nerve conductive test are next month.
    Is it usually this slow?

    Lynne

  2. #22
    Forum Member Barry52's Avatar
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    Hi Lynne,

    I don't know where your mum lives but unless she can get to an NHS hospital with a specialist MND clinic then she will be in a queue like many patients. Most hospitals don't treat MND with any urgency so I suggest you contact MNDA direct and ask for a list of the specialist clinics.

    Best wishes for your mum and the family.
    Barry
    Life is a journey, not a destination.

  3. #23
    Forum Member Terry's Avatar
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    Hi Lynne;

    I'm afraid that it is often slow to diagnose, mainly due to the NHS systems of delaying things. Her GP needs to push for support and urgent referrals to SALT etc.

    If she uses a tablet or computer then there are many cheep or free programs to help her speak, both Barry and I use one. Let us know if she does and what type of tech it is.

    As Barry says, ring or email Mnda Connect ( mndconnect@mndassociation.org 0808 802 6262 ) and they will help you as well.

    Keep us informed and please feel free to ask any question or share feelings etc.

    Love Terry
    The forum is still the best sorce for friendship and information. TB

  4. #24
    Forum Member Dvd's Avatar
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    Hi Steve .. i am so sorry to hear you lost your Mother to MND ..Take comfort she is now free from this horrible disease .. your posting took me back about 18 months when my friend Michael was diagonised .. he was also attending ENT consultants but nothing was found .. then his speech started to slur and his GP said he would need to see a neurologist .. rather than wait on a nhs appointment he decided to go privately .. he was seen the following week by a neurologist .. costing almost 200 for the appointment at a private clinic .. the consultant examined him ( legs arms etc ) was quite blunt and said .." you have Bulbar Palsy MND" . "I will get you admitted and we will put a tube in you " .. my friend just cried to a lay person he didn't know what this all meant .. i was in nursing ( the consultant knew that ) and to cut a long story i had to then explain about the tube etc etc as the consultant sat at his desk with his legs crossed out in front of him letting me explain the best i could what this was all about .. i just wanted to get out and get Michael settled ..It was horrible ..
    So even going privately they still throw it at you like it's only a minor ailment you have .. since that time i have managed to get Michaels consultant changed and there is no comparison to his new one .. i also have heard of a lot of other folk that attended the first consultant Michael saw and all those people have changed consultants due to his abrupt manner ..
    Do hope you and your family will keep thinking of the happy times you had with your Mum
    Dvd

  5. #25
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    Quote Originally Posted by Aklynne View Post
    Is it usually this slow?
    Lynne
    Yes. And its hard to diagnose. The main test (Nerve conductivity) does not always prove it one way or the other. So they repeat it. Will you get confirmation? Maybe. But I wouldn't wait. I would act now. And for what I am about to say you dont need anyone.

    Butt the problem is, she has the symptoms. I cant say if she has it or not. But there is things you can do now in the meantime.

    Hydration. Get her drinking. We need fluids to survive. Without adequate hydration we go down fast. Especially if we are weak.

    Sustenance. Food is medicine. Without food we go down pretty quickly. So its vital that she gets enough food and not lose weight. If someone with an MND looses weight its hard to put it back on again. And we need to be a bit on the chubby side. If she cant eat then energy drinks. Just get the calories in. She needs to be strong to survive this. And you can for a long time.

    As for comms, one blink yes and two blinks no. Thats actually all you need to start with.

    That will do for now.

  6. #26
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    Hi Lynne, so sorry to hear about it. It was Mums funeral yesterday and we managed to raise a nice amount for donation which I was pleased with.

    I've found the way it was handled by the NHS to be absolutely ridiculous - a joke in fact. I'm really angry at them still. We discussed a PEG for Mum with speech and language a few weeks prior to her going back into hospital, you'd think when someone was diagnosed and had lost 10% of their body weight in 10 days this would be a priority, nope, nothing happened at all. An absolute joke. So she struggled on trying to eat or drink with no help from anybody or anything and then ended up with pneumonia which was the final part for us as per original post. I can't help but think if the jokers running the system had fitted the PEG early like it should have been then she would still be here today.

    I didn't want to complain till after her funeral so that it wasn't just put down to grief. I wanted a period of time to gather more thoughts. I'm more annoyed every day. It's really made me think that a certain radical politician is right and the NHS should be abolished, immediately (and my wife works for it). It's opened my eyes to how poor it is and has made me start investigating private health care for my little family. Then I think about my monthly NI contributions etc and get annoyed all over again.

    One thing I did want to add as an update to how my mum passed away. I was really concerned about the way she died, i needn't be. My wife went to visit the sister a few days later who explained how mum went. She didn't choke as I thought so I don't want other people in the same situation scared that's how it will always end. Mum complained her breathing was becoming more difficult. The physio managed to get her in control of it and slow it down until mum just closed her eyes and passed away, all within seconds. I'm told for MND this was a kind way for it to end. It did sound quick.

    If you need to ask me anything Lynne please don't hesitate to message. One thing I wish I'd have done sooner was get in touch with the MNDA. I didn't do it till afterwards and it looks like they could have made a difference if I had - don't delay with that one would be my advice. To be fair to me though I thought we might have a year, not a month....but again perhaps if the neurologist would just answer the question of how long the whole situation would have been different.

  7. #27
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    PS. Mum only got all her tests done because she ended up in A&E and was kept in for 10 days so they did it quicker. Keep that in mind. 10 days of taking up a bed costs them money....

  8. #28
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    PPS. we suspect my little lad has a mild case of autism - now we have to wait 5 months for an appointment. Great isn't it.

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