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Thread: My Dad....

  1. #1
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    Unhappy My Dad....

    Hey everyone,

    Not really sure what I'm doing here... My dad was diagnosed with MND over Easter. He stopped berating at home and almost died. We were told by the doctors he probably wasn't going to make it but thank god he did, only to be told he had MND...

    Guess I'm just looking for a bit of advise... Maybe not even that, just some words of wisdom from others in this truly **** situation.

    My dads been doing loads of research and is following the Dianna Protocol. It's been a few months now and he seems fine to me. His speech is definitely getting worse but he still does his best to get out the house, go on short walks and even managed a camping trip over the weekend. Considering the doctors only gave him a few months in April I think he's doing amazing.

    However... My mums worried. He's been given a computer by the speech therapist and they've recommended that he starts recording his own voice onto it for when the time comes that he won't be able to speak and the machine will have to do it for him. I totally understand his point which is that he simply doesn't want to think about it. Neither do I. But I know mums right... Eventually when it does happen I want to hear my dads voice not a computers... He's also been asked to think about getting a peg fitted but he's refused...

    The hardest thing about this whole thing is not knowing how he really feels. I know it's not guna be anything I really want to hear but I'm just so heartbroken. I try to see him every week and take my daughter, his first grandchild to see him..

    I'm just rambling now... I just still can't believe this is happening to my dad. He was the life and soul of our family and it's all been taken away by this evil disease I don't want to lose him. I don't want him not to be around next year when I turn 30, or be there on my wedding day. I love my dad and any advise on helping him and my mum get through this would be greatly appreciated.

    Jade x

  2. #2
    Forum Member Terry's Avatar
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    Hi Jade and welcome;

    What your dad want's to do is down to him, recording his voice is not that important but getting a PEG might be. I did not want a PEG to be fitted too early and managed to wait about four years before having it fitted over a year ago. I still have not really used it or needed it.

    Most people with Mnd need it sooner and some never do need one.

    It's great that your dad's living life, and getting on with it.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

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  3. #3
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    Sorry to read about your dad. From my own experience you have to let people come to their own decisions in their own time. It's hard for you to watch but I imagine much harder for your dad. I couldn't understand why mum wouldn't read anything about MND or think more than in the present but who kmows how I'd react given the same circumstances. Mum lost her speech before diagnosis so voice banking wasn't an option. We didn't find the computerised voice too bad and at least we were able to communicate.

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    Hi Jade, I know just how you feel, so sorry to hear about your Dad. It takes a while for it all to sink in, sometimes I know we feel we are dreaming, other times we can still share a joke and feel the sunshine on our faces and realise life can be beautiful, inspite of the horrors of what mnd does or threatens to do . My husband reluctantly got an ipad, and a predictiable app, uses it now daily, it is a real miracle that changes our lives, allowing us to communicate and giving my hubby his independence and the pleasure of maintaining conversation with his kids. The matter of the PEG is something else. But I have learnt especially listening to the voices here that I must be guided by my husband and how the disease is affecting him, not just his capabilites but his resolve, his defiance and his privacy. I wish you and your dear family only good things and urge you to make the very most of each day. Sounds a cliche but it is so true, a friend lost her husband and childhood sweetheart in a a matter of hours, a massive heart attack struck him down seemingly out of the blue. I have been given a warning and some time to be with my husband and am determind to enjoy every moment I can with him, even the trials of damn mnd show us we have a deep love and bond. Make sure your Mum and Dad can do the things they enjoy together. Creme egg x

  5. #5
    Forum Member Dude's Avatar
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    Hi Jade Sorry to hear about your Dad. Why did he stop breathing. Was it unrelated to MND. Words of wisdom on this forum ?, not sure about that (I jest, the folks on here can answer most of your concerns). I'd never heard of the Deanna protocol, but having googled it seems to be very popular in the States. It has been covered before on this forum. I've taken Riluzole since diagnosis in 08. MND PBP.
    I've never heard of a doctor specifying 'a few months' before. Has dad got another illness as well as MND or is doc a total plank. My GP signed 2 forms for me saying life expectancy was less than 1 year so I could cash 2 pensions in. That was well over 2 years ago.
    From your description of walking & camping your dad seems to be getting along fine. Just offer him love and support and crack on. The voice bank is good, I left it too late. I can't talk now so use robot voice lol. Try and visit twice a week if possible. He doesn't need to think about a feeding tube yet. It 's his choice. I don't have one and not sure if I'll go that way. I walked my 28 year old daughter down the aisle over 18 months ago, last time I walked. Is there a reason you can't get married this year. I'm making a big assumption you are still with your daughters' dad. Q: How does myh dad feel. He feels dominated by this disease and is going to be a burden on his family. But after a while he will accept the **** hand he's been dealt and carry on with life, but a life with hurdles and You & Mum can help enormously by making each change easier. My youngest daughter has a baby now, Daisy Jasmin 10 months old, she is great and loves her Gramps or Grumpy Gramps as Amy call me. Love to you all Dude.

  6. #6
    Forum Member Dude's Avatar
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    Hi Jade Is Dad taking Riluzole.

  7. #7
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    Quote Originally Posted by Dude View Post
    Hi Jade Is Dad taking Riluzole.
    Thank you all for your replies. I've been itching to get back to you all but my account wouldn't allow me. Instead I've been reading posts, smiling, crying and taking in a lot of new information.

    Do you mind me asking what types of MND you all have? My dad has progressive bulbar palsy and I think he's probably had it about a year. It's so nice to see so many upbeat and positive people here. I've been trying to get my dad to join this forum but I guess he's not ready yet. I hope he will. The support and advice you guys give each other is better than what me or my family can offer him at the moment.

    Dude... My Dad had lost a lot of weight and was feeling pretty **** so my mum admitted him to hospital on her birthday (29th March). The doctors weren't sure what was wrong so they stuck him on a cancer ward. I guess the weight loss and loss of apatite led them to the assumption he had cancer... He was there for a week. They finally got a neurologist to see him, who said they thought it was a problem with nerves in his neck not communicating with his muscles and would be treatable. Me and mum left the hospital over the moon. So glad it wasn't cancer, so happy we weren't going to lose him... It was the bank holiday weekend so dad persuaded them to let him home as all the family would be visiting. Easter Sunday mum woke me up because she couldn't wake him. Called and ambulance and the rest is a bit of a blur. They ran tests and gave us the news he had MND made worse because he's always been a heavy smoker, he has emphysema so his weakening muscles along with bad lungs caused him to stop breathing. He now has to use breathing apparatus all night every night when he sleeps to stop it happening again.

    I'd love to get married this year, I'd get married tomorrow if it meant my dad could be there. My partners Dad has recently been diagnosed with terminal cancer so we're all going through pretty rough times at the moment. We just don't have the money. I'm trying to get back into work after having 18 months off raising our daughter. Maybe we'll win the lottery... I feel like we deserve a bit of luck!?

    I know what you mean about having "time" Cream Egg. We almost lost my dad that weekend. We were all taken into a little room and told he wasn't expected to make the next 48hrs so to have him here now, laughing a joking with us. Getting the boys to do all the chores he can no longer do while he sits in the garden with a G&T delegating is a blessing. A horrible one but still a bless to have him with us. I know he has good days and bad days and he loves having all us kids visit (I have a brother and a cousin who visit every weekend with me and my little family). I think the weeks are quite quiet for him though... He had to sell his motorbike last week which was probably really hard. He loved his bike. Mum and dad have a lot of good neighbours who offer support but mum doesn't want other people sticking their noses in! I guess they just have to get back to their own kind of "normality" in their own time.

    The Deanna Protocol seems to be working well for him. My uncle found it online. The story behind it filled us all with hope. It's cost him a small fortune getting all the pills, (a lot of them had to be sent from the states) and he has so many to take but what's he got to lose?! The doctor offered him Riluzole but the side affects sounded horrible and the doctor said it would probably only extend his life by a few months. How do you get on with it?

    Dad definitely is living life. He always has, I guess that's why it's so hard to get my head around it all. He doesn't want MND to get the better of him and I know he'll fight it tooth and nail to the end xx

  8. #8
    Forum Member Dude's Avatar
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    Hi Jade I've been taking it without any side effects. I would advise your dad to try it for 3 months. The usual blurb is extends life by a few months but nobody knows. I took it to show my 4 kids I was being positive. Reading side effects on line is a negative way to approach things, most drugs show worst side effect as death. I feel that Riluzole has extended my life by a minimum of 1 year at least but more importantly I am taking something that crosses the blood-brain barrier and is getting at those pesky neurons. OK get married in a few weeks so both Dads can enjoy it. Get a loan & keep it small. Dude x

  9. #9
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    Hi Jade

    You are really having a tough time, sorry to hear about your dad, but I honestly say it's been a crap time to for me and my dad I am 34 and have a young family also my dad was diagnosed March 2014 and things have dramatically changed, my dad has ALS type his speech is extremely poor and I really do struggle to understand him, he has trouble swallowing so fed via PEG but can eat small amounts of soft food, he has to have thickened drinks, he continually dribbles unable to walk unaided and in February started with breathing difficulties was using NIV but he struggled to tolerate it for long periods so he now decided that he doesn't want to continue using it anymore, he was having constant panic attacks all the time and I really found it difficult to manage on my own as I am an only child and plus my dad is single and has been for last 4 years, hardest thing is that my dad is only 56 and I remember my dad as the life and soul of a party and now it's difficult to string a conversation together, after dad deteriorated few months ago I had to make the decision to put dad into a nursing home as I was unable to give dad 24 hour care as I have 3 kids of my own 13, 10 ,10 and my partner also has a daughter who is 6 so dad was unable to move in with us as it wouldn't of been fair on him or the kids, anyway if you fancy a chat sometime please inbox me, I don't know everything about MND but I do sometimes think it helps to talk to someone who is going through what you are and understands how cruel this disease really is.


    All the best Hun Jennie x

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    I was diagnosed 8 years ago. With regard to voice banking - it came too late for me but I am quite happy with the voice on the "Speak It" app on my iPad. I've never taken any supplements, I have a PEG which I've never used. I have a PMA (positive mental attitude) and consider myself one of the lucky ones who has been able to adapt slowly as the MND has progressed.

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