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All Happening So Fast

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    All Happening So Fast

    Hi all,

    This is my first time on a forum; I decided to join having read the tremendous support and guidance that you have all shown to others.

    My father (Tony) was finally diagnosed with rapid onset Motor Neurone Disease (suspected ALS type) on 20th December 2022, after a year-long battle to find out what was wrong with him.

    At the start of 2022, my father was a 79 year old man who enjoyed 5-6 mile hikes over the hills with my mother, extremely active and happy to have finally relocated back near the family from France. Today, he is a shell of his former self, unable to walk unassisted for more than 5m, breathless, loss of movement in his hands an arms…but most importantly, his sever depression, lack of confidence and fear is heartbreaking to watch.

    My father has always been a very proud and physical man, having served in the military and for the government right until his retirement. He has always been the one to help others and is finding it extremely difficult now the tables have turned. To some extent, this may have been easier for him had there been some neurological deterioration, however he is still bright as a button and feels useless and a burden.

    I have to say that since diagnosis, the amount of support we have received from many teams has been phenomenal, and we are all trying to adjust in our own way as a family. I have to say however, that I am finding my parents’ respective attitudes frustrating to say the least.

    This next statement isn’t meant to come across as harsh and I love my mother very much, but she has always been very ego-centric and emotionally unstable. She isn’t dealing with my dad’s illness very well and won’t take up the offer of help or support when offered (for example, talking to a counsellor at the hospice etc). She also keeps ‘Googling’ dad’s symptoms, which then makes her worse. I have told her several times to avoid doing that and to only listen to dad’s health team (everyone’s journey is different), but she keeps doing it and winding herself up. She then gets upset, which gets my dad upset even more.

    My dad on the other hand is stuck in his own head and it’s almost impossible to get him out of it. He says his life isn’t worth living any more and he has no quality of life… Again this is heartbreaking to hear. He feels embarrassed and frightened that he no longer has control over his body. He is angry that he can no longer do things he used to do, but won’t accept any assistance (e.g. in the form of a wheelchair etc), which would enable him to still do the things he used to. He understands that his disease is likely to be a quick one and that it is degenerative, but he’s living emotionally as though he has already died (if that makes sense). He does speak to a therapist and is on Sertraline (4 months), but he’s only worsened.

    I accept that I can’t fix this problem for my parents, but it’s so very hard seeing them go through this.

    Sorry for the rant, but just wanted to share with others who may understand what’s going on.

    Espeat I’m sorry to hear of your dad’s diagnosis and rapid progression. It is so very difficult to go from being a provider and an independent person to one who requires so much assistance to just do basic self care. I know from my own experience that as soon as I get used to a level of disability then progression kicks in and I have to get used to a lower level of abilities.


      I think you've hit the nail on the head about why this disease is so awful. The physical issues are bad enough and are well documented, but i believe that the emotional torture is what makes living with the disease so difficult.

      For my family the "diagnosis" is what turned our life up side down. Thats when the man who I married changed. Looking back at photos you can see the difference in pre-diagnosis photos to post diagnosis. He was always a happy go lucky laid back man and it showed in his appearance, but he began to look "ill", gaunt and sad.

      It is heartbreaking to see.

      I'm sending you a big hug, and hope you find your way through it. I had weekly counselling sessions, which at least gave me an avenue to let it all out from my perspective. You will have a complex range of feelings - its tough.

      Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

      Sense of humour intact throughout.

      Sadly passed away peacefully 2/9/22


        Espeat welcome to the forum. I'm sorry to read your story and how hard this has hit your dad, with your mum struggling to cope.

        I really hope with support that your mum can find the sense of purpose and focus her energy more positively. There is no easy answer though. We all seem to handle things differently.

        At least here you can talk and we can all share experiences xx
        Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

        Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!


          Espeat Sorry to read about your Dad and the impact overall.
          I feel the day to day uncertainties combined with awareness of how MND impacts over a longer time (on the person and people around, differently) is such a challenge and emotional rollercoaster.
          2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
          Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...


            Espeat A warm welcome to the forum, sorry to read of your dad's diagnosis and thank's for posting, it can't have been easy...

            ALS is a difficult diagnosis to come to terms with, not only for the diagnosed person, but for their close family and friends. Everybody will cope with it in their own way and your mum is coping as she is because of how devastating it is to see her partner, the love of her life, deteriorate before her eyes, can't make sense of it and is frightened - has your mum had the opportunity to have some counselling? Have you?

            The MND Connect helpline is also a good resource - details on their tab at the top of the page. It might be good for you to give them a call too; your world has been turned upside down.

            Originally posted by Espeat View Post
            To some extent, this may have been easier for him had there been some neurological deterioration,
            I don't quite understand this statement, sorry: from your description, it sounds as if your dad has had significant neurological deterioration 🤔

            Love Ellie xx
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


              Espeat so sorry for all that you and your family are going through at this time. It is extremely daunting for you all at the beginning and it’s only been five weeks since diagnosis so you’re all bound to be in an emotional place. Hopefully with some time things may improve for you all one when everything is in place. Perhaps your Dads antidepressants may need changing, he’s given them four months with little effect. Truly hope things settle for you somewhat xx


                It can be very difficult going, fairly rapidly, from a generally normal and active life to disabled, frightened, traumatised by the diagnosis and feeling like your life is suddenly not your own. But it is. When he is ready, try to encourage him to talk about feelings, even if that is venting his frustration and anger. The biggest piece of advice I can give is that your dad takes back some control, if there are things he can no longer do, he can find a new way to do it, or another new thing to do. Adapt and survive. I hope his condition settles, you can get long plateaus, deterioration can slow for periods of time. (I was running up an aircraft steps in the September, by November could barely walk without holding on to someone, was falling over and limping. But that was over 10 years ago, so it slowed right down).


                  It sounds like your parents are both going through the stages of grief. It's still early after the diagnosis and they were probably hoping for a different outcome since it took so long to diagnose.

                  People process things in different ways. Just be there for them and love them. Let them know you're willing to help as this disease progresses.

                  It's very hard when you have to go from an active lifestyle to being disabled. I was mad and sad. I was a runner and played competitive sports. I was diagnosed at 60. I can only hope that both your parents see how important and useful technology can be with this disease.

                  It is a horrible disease. Your parents are fortunate to have you by their side. Hopefully, they will accept help. Keep gently encouraging them in a loving way.
                  Living live on the beach. Dx 2015 ALS (limb onset)


                    Espeat welcome to the forum. I'm sorry to hear of your dad's diagnosis and the difficulties he's experiencing. That first period following diagnosis can be so difficult and it must be very difficult hearing it described as rapid onset.

                    My dad (diagnosed bulbar onset may 21 after 12 months of symptoms) is prone to anxiety and low mood and when he was diagnosed at 69 (having previously been a fit guy, boxing and working as a builder) he looked haunted and devastated and it was heartbreaking to see.

                    He's taken it one day at a time and has been able to cope remarkably well. He hasn't taken any psychological support and only talks to the dog!

                    It took me quite a while to accept I couldn't fix the overall issue of MND and that all I can try to do is help him get the best possible support to manage the different effects as much as possible.

                    You can be sure that people on this forum understand and there's always someone with good advice or suggestions.