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    Hello everybody, my name is Dennis. I am 46 years old and have three children aged five, 12 and 14. From 2014 until 2020 I worked night shift five nights a week. My job entailed a fair bit of physical activity. A typical shift would require me to carry equipment, walking down normally 120 stairs then walking a few miles on ballasted track and back up the 120 stairs. Throughout my life have even a healthy diet, exercise regularly and would consider myself to be lived a healthy lifestyle in excellent health throughout. I have always had an athletic physique and I used to swim three times a week, averaging 1600 m in 30 minutes. I was strong and used to do little bit of weight training, sit ups and push ups daily. Retrospectively to my diagnosis my onset started with breathlessness which became apparent to me in September 2019. I had previously had never experienced fatigue and breathlessness while undertaking normal activities like walking up stairs or swimming.

    It was in September 2019 while walking up a flight of stairs that I was too breathless and fatigued to do the whole flight in one go. I had to stop and catch my breath before continuing to the top of the stairs. Granted the number of stairs was 100, however I was exceptionally fit at the time. I have also noticed that when I started to swim I was struggling to maintain a rhythm and control my breathing. I had an overwhelming sensation that I was not getting enough hair into my lungs. I had also noticed that I was starting to get cramps in my feet, hamstrings and calf muscles. From about December 2019 I had noticed that when I was tired I would get terrible restless leg syndrome when trying to fall asleep and when I woke up and I was very tired my hands would tremble. I started to notice when I was brushing my teeth that muscle in my deltoid twitch during the action of brushing my teeth.

    In March 2020 I contracted the coronavirus, which took me about six weeks to fully recover from. I had the temperature, very painful lungs with difficulty breathing. I had a change in smell whereby I could not correctly identify things by their smell. I had a terrible headache for days that was associated with more pain when I used my eyes to look left right up or down and I was generally constantly fatigue. The country then went into lockdown and I ended up being furloughed. During this time I started doing some DIY, while I was stripping paint of a door frame it became apparent that I was unable to keep my arms above my shoulder height for an extended period of time. If I lowered my arms, after a few minutes I could lift my arms up again above my head before they would quickly fatigue and I would need to lower arms again. By late May I was noticing considerable muscle atrophy in my deltoid, bicep, back and trapezius muscles and restless leg syndrome became the bane of my life. Every night I tried to get asleep I would feel a build-up of energy that would release into calf muscle and make me involuntarily moved my foot at the same time as being painful would make me immensely wide-awake. It would take me hours to eventually fall asleep then when I woke up in the morning I was suffering with fatigue.

    I called my GP in July during which I mentioned a weakness in my arm. She asked me to come in and see her during which she tested my reflexes and got me to blow into an instrument presumably to measure respiratory function. Three days later I had an appointment to see a neurologist at the Royal Free London. The consultant and his registrar had a look at the photographs I had brought as evidence of my muscle atrophy and at this point my muscles were twitching all over my body, and weakness in my hands and arms. The neurologist wanted further tests, blood, nerve conduction study and MRI scan. This was scheduled the following week and the follow-up appointment at the end of the week. So it was two weeks from the time I saw my GP to the time I saw the neurologist with a diagnosis. The neurologist told me I had motor neuron disease, and wanted to refer me to the neurologist who was an expert in the field. He prescribed me gabapentin which absolutely resolved and restless leg issue, and stopped me being so tearful all the time. The appointment of the second neurologist was due to go ahead in August 2020 but there was an expected second wave of coronavirus so that appointment got moved to September 2020. During this consultation, reflexes were checked once again and a detailed history of symptoms. He concurred with the diagnosis of motor neuron disease and gave me a prognosis including a life expectancy of 2 to 5 years from the onset.

    I am a tertiary educated professional accredited engineer with an Internet connection and computer so I did a lot of research on the Internet regarding MND or, also known as, in other countries as ALS. Most medical journals and very helpful websites relating to MND/ALS have the same dire beginning followed by pretty scary stuff relating to progression of losing control of a voluntary muscle control with severely reduced life expectancy. There was a lot of information I was trying to digest combined by engaging with the neurological and stroke department from Camden NHS, who were very helpful including giving me a link to things related to the PEG. It’s a lot for one to start to comprehend.

    Due to traumatic events in my youth and early adult I learned to suppress fear and anxiety. I’ve come to the realisation that I pretend that I don’t care about dying but I actually do fear it. I feared not because I’m scared to lose this life but the impact that my demise will have on my family members. It was emotionally impossible to for me to tell the two older kids but luckily my wife could. I am at loss because I feel I have no purpose in life any more due to the prognosis and diagnosis of MND. When I meditate I frequently have a vision of something very closely represents a motorway junction and I must decide which side of the fork to take. The destination is the same but the journey is different. In case you missed it destination is death and the journey life.
    As an engineer I have to consider that MND/ALS is diagnosed by elimination of all mimicking illnesses and diseases. There is no conclusive test to give a result and by that test result alone indicates, indisputably, a positive result of MND/ALS. I am a firm believer that we discover or learn new things every day. It is therefore possible that there may be undiscovered illnesses that do mimic MND/ALS. Therefore find it very difficult to accept the prognosis but I accept that I do have some signs and symptoms that mimic MND/ALS.

    I have made some changes in my life I now take antioxidants in the form of a garlic extract, half a Berocca tablet, vitamins C, D, E, magnesium, alpha lipoic acid, Co Q10, melatonin and CBD oil. I am eating more fibre, more carbs and less saturated fat and no fish. I previously was on a keto diet. I have an amalgam filling that is coming out in two weeks time. I was not aware at the time of my filling that the amalgam filling will release mercury is a vapour for the rest of your life!!! I also meditate and exercise daily as best I can.

    Apologies for such a long first post but I just needed to get out there.

    D

    #2
    Hi Dennis,

    Welcome to the forum. That's a hell of a first post, but well done for getting it all down. I was originally diagnosed last year as CIDP, but always suspected it might be MND. Finally confirmed July 2020. So I had sort of mentally prepared myself for the worst all along. You've had an awful lot to absorb in a very short space of time. I think someone quoted a doctor as once saying 'couch potatoes don't get MND' and it seems to affect people who are pretty fit and active. It's not all doom and gloom. It can bring you a lot closer to family and friends, it has with me. I've always had a good diet, but with MND you need to be careful of weight loss, so now my diet also includes more cakes and puddings than before.

    All the best
    Each day is made easier with a bit of humour.

    Comment


      #3
      Welcome to the forum, Dennis and we all know that first post is not an easy one to make.

      The diagnosis of an MND sets us off on an emotional rollercoaster with some quite unpleasant scary moments, and we all scream our heads off from time to time. Remember, there is no right way or wrong way to live with MND - whatever and however you decide to do and cope with your situation should be your decision.

      If you're interested in clinical trials, ask in your MND clinic.

      Given you're taking supplements and if you're looking for more to take (!!) turmeric, in the form of curcumin, is another to research. (The best is the expensive Theracurmin capsules by Integrative Therapeutics, based in the US)

      In the meantime, stay healthy, stay safe.

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

      Comment


        #4
        Welcome aboard Dennis, this ship only has one destination but we can have fun getting there together. 😊

        Comment


          #5
          Hi Dennis
          you made the first step and that's great.
          we are all here for each other. It's nice to meet you.
          Denise xx

          Comment


            #6
            Hello Dennis and welcome,
            You say you feel you have no purpose in life, you are still early into this, it’s a shock and scary, these feelings will ease, we’ve all been there, and I believe that you soon recognise that your purpose in life is your wife and children, it’s easy to say but concentrate on them , not this illness, acceptance is a big step but it will help. I am 10months post diagnosis and consider it a bloody nuisance now and carry as normal as much as I can
            Ellie’s wise words of it’s you that decide are very true
            s
            As long as there’s golf and beer I’m happy

            Comment


              #7
              Hello and welcome Dennis.

              You have summed up your journey to diagnosis very well and I am sorry that you have succumbed to this disease so early in your life. You and your family must be struggling emotionally and you will find support here as we all understand the situation. Like you I am a firm believer that supplements can help a stressed immune system and Ellie makes a good point about curcumin. I take a liquid version which is expensive but it has better bioavailability than the tablet form. https://www.truthorigins.co.uk

              Barry
              I’m going to do this even if it kills me!

              Comment


                #8
                Hi Dennis. Welcome to the ‘club’ no one wants to join. Thank you for being so open and sharing so much. Your family are the most important thing in your life and you are to them. Treasure your time with them and be as open as you can about everything. Tell them when you are having good days and bad days. They are all on this horrible journey with you.

                You will get a lot of support from people on this forum and do not be afraid of asking anything. There will always be someone with an answer.

                Wishing you peace and happiness

                Richard

                Comment


                  #9

                  Yesterday, 13:16
                  Hello Dennis
                  I believe my symptoms started around 2016. I was fatigued and unable to exercise for long. In February 2019 I started to get cramps in my feet, hamstrings, calf muscles, arms and fasiculations 24/7 in my arms and legs. I was not able to concentrate or be myself for about 16 months worrying about what was happening and a feeling of being in limbo. As soon as my diagnosis was given in June 2020 I reverted back to myself and felt relieved that I could concentrate on living, doing things, making plans. Anthony must have thought I was a raving banshee demanding this and that for the first month

                  I hope you can allow yourself to feel loved and cared for by your family who are with you. It is now their turn to look after you and your purpose to remain strong, keep positive, accept their love and care for you

                  Keep looking after your health, your body and meditate. You are important

                  Best wishes to you and your family

                  Jeanette
                  I have the ability to cope with this and I can still be the best person I can be. This is my life - if I am happy others around me are happy too

                  Comment


                    #10
                    Dennis, you wrote a very good synopsis of your journey which I was interested to read. I can relate to some of it, which I’m sure that many here will, so no need for apologies. As already said we are here for each other.

                    About Gaberpentine: I was given that to try. It helped deal with my pain (mostly non mnd related) but I couldn’t cope with the constant sleepiness. I was given a similar drug to try but that had a similar effect. The last one that I was given - Pregabalin had the same effect. My GP and I came to the conclusion that this family of drugs is not suitable for me. I stopped it all. My sleep is challenged but I can dose in my chair when needed.

                    I don’t take any supplements currently. But I watch and read everything that I can for evidence that they are helpful.

                    Take care, 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.

                    Comment


                      #11
                      Good afternoon Dennis,

                      I'm the same as Lynne in that I thought what you wrote was a very good synopsis of your journey and I was interested to read it.

                      I'm with Ellie in that I take theracurmin in the hope that it will have some effect and have been following dear Dr Bedlack In the USA who is In part driving this part of the therapeutic canon.

                      My very best wishes for you in this horrible disease and of course to ask away if there's more you want known
                      Warmly


                      Andy

                      ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

                      "Things turn out the best for people who make the best of the way things turn out"

                      Comment


                        #12
                        Hi all
                        I was diagnosed in June with MND and as another said in a post I too found it a relief to finally know what was wrong with me.My husband and adult kids swore I was in shock as the same day I became calmer and went home from the neurologist with the same info as a lot of others have received "you might have 2-5 years but you may not".so as I was due to retire this year as now just 66..I had to take retirement on ill health grounds from my job as a social worker in a hospital.I swung into practical mode and did my benefit application for PIP, got the blue badge organised, checked I had registered my lasting power of attorney, checked the will was correct and made a funeral plan and umpteen lists for my family.So that took my time up for a few weeks.Then I decided despite the neurologist advising me not to I arranged for friends 2 at a time to come and sit in our garden and enjoy the summer with us.I can say We have had a blast these last four months and been very supported by family, close friends and the hospice team. Of course I sometimes cry when I think of having a time limited illness but so many people on this site I really do try and live in the day and count my blessings. I know how this illness can progress as in my job I met several patients in hopsital who had MND and in their own homes when I was a community social worker.That helped in a way as I was able to get on with voice banking, getting equipment I now need ie a stairlift, and a car on the motability scheme. The MND association have been so so supportive and I have a buddy/volunteer via them which is lovely .Another big thing that helps me daily is my strong Catholic faith. I watch a lot of Christian speakers on you tube..sometimes talks about death, dying and suffering and other times more upbeat subjects. So today so far has been another great day spent at home with my husband just pottering.A friend is coming for a take away curry this evening with a glass or two of wine..A perfect end to the day.
                        Like so many people on here my walking is getting worse and I use the wheelchair outdoors, my arms are also affected as is my tongue(At first didnt notice the fasciculations in my tongue but in the evenings they are more obvious now.
                        I am glad I have had has these last four months to really appreciate the close friends and family who demonstrate in so many ways that they care for my hubby and I.The friend who is coming this evening comes and weeds my garden as I can no longer kneel or bed without over balancing..How kind is that as she knows I love the garden in all seasons.I am pleased to have time to let my family and friends know how much they have always meant to me and of course I have told them that before but now is seems to enrich my life.Finally it is great that people can voice their feelings good and bad on here as we all have our times of feeling down. Thanks for reading my rambling.X

                        Comment


                          #13
                          Originally posted by Mary C View Post
                          Hi all
                          I was diagnosed in June with MND and as another said in a post I too found it a relief to finally know what was wrong with me.My husband and adult kids swore I was in shock as the same day I became calmer and went home from the neurologist with the same info as a lot of others have received "you might have 2-5 years but you may not".so as I was due to retire this year as now just 66..I had to take retirement on ill health grounds from my job as a social worker in a hospital.I swung into practical mode and did my benefit application for PIP, got the blue badge organised, checked I had registered my lasting power of attorney, checked the will was correct and made a funeral plan and umpteen lists for my family.So that took my time up for a few weeks.Then I decided despite the neurologist advising me not to I arranged for friends 2 at a time to come and sit in our garden and enjoy the summer with us.I can say We have had a blast these last four months and been very supported by family, close friends and the hospice team. Of course I sometimes cry when I think of having a time limited illness but so many people on this site I really do try and live in the day and count my blessings. I know how this illness can progress as in my job I met several patients in hopsital who had MND and in their own homes when I was a community social worker.That helped in a way as I was able to get on with voice banking, getting equipment I now need ie a stairlift, and a car on the motability scheme. The MND association have been so so supportive and I have a buddy/volunteer via them which is lovely .Another big thing that helps me daily is my strong Catholic faith. I watch a lot of Christian speakers on you tube..sometimes talks about death, dying and suffering and other times more upbeat subjects. So today so far has been another great day spent at home with my husband just pottering.A friend is coming for a take away curry this evening with a glass or two of wine..A perfect end to the day.
                          Like so many people on here my walking is getting worse and I use the wheelchair outdoors, my arms are also affected as is my tongue(At first didnt notice the fasciculations in my tongue but in the evenings they are more obvious now.
                          I am glad I have had has these last four months to really appreciate the close friends and family who demonstrate in so many ways that they care for my hubby and I.The friend who is coming this evening comes and weeds my garden as I can no longer kneel or bed without over balancing..How kind is that as she knows I love the garden in all seasons.I am pleased to have time to let my family and friends know how much they have always meant to me and of course I have told them that before but now is seems to enrich my life.Finally it is great that people can voice their feelings good and bad on here as we all have our times of feeling down. Thanks for reading my rambling.X
                          Hello Mary C
                          I read your first post and felt a clear connection with all you said. It was reassuring how my reaction, and that of my now husband, in June with my diagnosis, was the same in that I knew I had to organise myself with our wills, power of attorney, PIP and Blue Badge, I had lists all over the place for Anthony and my sister who are my two closest people in my life
                          Thanks to your work experience as a Hospital Social Worker and having interactions with MND sufferers, has helped you so much and given you valuable insight
                          Can you tell me about the support you have with your “buddy” when you said “The MND association have been so supportive and I have a buddy“
                          I would like to know how you go about having a buddy
                          I appreciate your time spent reading and replying to my message
                          Best Wishes Jeanette
                          I have the ability to cope with this and I can still be the best person I can be. This is my life - if I am happy others around me are happy too

                          Comment


                            #14
                            Hi,
                            Welcome to this forum
                            Nice to meet you
                            Take care

                            Comment


                              #15
                              Originally posted by Barry52 View Post
                              Hello and welcome Dennis.

                              Like you I am a firm believer that supplements can help a stressed immune system and Ellie makes a good point about curcumin. I take a liquid version which is expensive but it has better bioavailability than the tablet form. https://www.truthorigins.co.uk

                              Barry
                              Thank-you Ellie and Barry. I now take this and might I add that it is tasty!

                              Comment

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