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Living with MND - My Dad

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    Living with MND - My Dad

    Good afternoon all,

    I've joined the forum this week to share mine and my families experience of Living with MND. My Dad was diagnosed in October 2020 and the deterioration has been fairly quick. I've been writing weekly blogs for 2 months now and would like to share this with you all. I did it to mainly just clear my head but if it can help one person in their struggle then that's great. My blogs can be found via the below:

    https://richardkyson.medium.com

    #2
    Richard, so much resonates. Well done for getting it down

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      #3
      richard that was wonderful. best wishes and hugs to all of you
      denise xxxx

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        #4
        Welcome to the forum Richard x it's a sad read but one that we have mostly experienced. You are most welcome to ask anything and hopefully we can offer answers and support for you and your family and dad xx take care x Sarah xx

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          #5
          I have some questions and any answers or suggestions would be massively welcomed.

          - Dad is suffering from a type of clonus where he gets random, violent cramps in his legs that sends his knee towards his chest and foot up off the floor. He has been prescribed Citalopram and we're trying natural things like cherry juice and camomile tea which are meant to help. Any ideas?
          - Dad's speech is also affected by his emotions. His speech is normal most of the time, a little slurred but generally okay. When he gets really emotional or distressed his speech really goes and he finds it hard to get any words out. Has anyone experienced similar? The consultant suggested Baclofen, but after some research we don't like the sound of it.

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            #6
            We all send your dad and yourself our best wishes rykyson xx

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              #7
              rkyson Welcome to the Forum - I look forward to reading through your blog.

              Re the muscle spasms: your dad could try taking magnesium supplements (start off slowly and be aware that some forms of magnesium can have a laxative effect) or CBD Oil. Massage the muscles and move them regularly, passively if necessary. Maybe invest in a floor pedal exercise machine to help lower the muscle tone.

              Ultimately, he may need meds to help improve his quality of life - I could not get out of bed if I didn't take Baclofen.

              Re emotions: the whole thing about knowing what we're about to lose is so emotional that it can overwhelm us, rendering us unable to communicate - we are grieving. Throw in even minimal breathing and/or speech impairments, and we can become sobbing, gasping, shaking wrecks 😏 The Citalopram would have been suggested to help 'regulate' your dad's emotions.

              Did anyone mention Emotional Lability to him? It is exaggerated emotional responses and/or inappropriate responses (eg. laughing at sad things) and is fairly common in MND - sometimes it's mild, sometimes not and again, Citalopram is often used to dampen this.

              Take care.

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

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                #8
                Welcome Rykson. I’ll read your blog soon, thanks. Love Lynne
                ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                I'm staying positive and taking each day as it comes.

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                  #9
                  Thank you all for your comments, it’s great to hear from you.
                  Ellie thank you, it’s interesting to hear that baclofen worked well for you. We’ll discuss your other comments and see where we go. We’ve got him on 5 drops of CBD oil each night before bed.

                  I think Dads MND is fast, I’d be interested to know more. For example, he was working in November. Driving a truck, unloading and strapping down vehicles. Now he can hardly walk, can’t lift anything, can’t feed himself and needs toilet/wash assistance. It seems to be really quick. Thoughts would be welcomed

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                    #10
                    Hi Richard and welcome to the forum.

                    I can endorse baclofen for reducing the effects of cramps and also citalopram to lessen emotional effects. I was prescribed both drugs but make sure that your dad consults his GP or consultant to get the correct dose.
                    I’m going to do this even if it kills me!

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                      #11
                      Have some platitudes from me too pal, they really work great don't they? 🤔

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                        #12
                        Hi rykyson - I think from reading others' comments that rate of progression may vary a lot. For some it may progress quickly then slow. People seem to agree that all run a different course. Best wishes

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                          #13
                          rkyson As Gordan said, rates of progression vary enormously, not only between people with ALS/MND, but in the individual themselves. Progression tends to be neither linear nor symmetrical, and people can plateau for periods of time or experience an increase in symptoms/progression over a short period of time - none of which is answering your question!!

                          My own first year (measured from first symptoms) saw me go from completely normal, to full limb involvement, having a feeding tube and speech & breathing impacted. Similar to your dad, my hand was where the first symptoms occurred but, without wanted to sound like the proverbial broken record, everybody is different and comparisons cannot even be made between two people who have the same onset, same gender and are the same age.


                          Are all 4 limbs now affected? Hopefully your dad has a good, proactive OT who provides equipment to keep him independent and safe for as long as possible.

                          If it hasn’t arisen yet, check out voice banking.

                          Love Ellie.

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

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                            #14
                            I keep saying it but no one listens to me. Matthew

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                              #15
                              Hi x Baclofen is good for me too xx I wouldn't be able to move without it and I think that it would help the sudden reflexes too xx try it and dad can make his mind up x

                              Sarah x

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