No announcement yet.

I'm the latest newbie

  • Filter
  • Time
  • Show
Clear All
new posts

    I'm the latest newbie

    A very warm and humble Hello to all participants of this forum.
    This is my first of many posts, and I hope my posts will inspire some out of the box thinking and analysis.

    While waiting to be activated I took a little tour of the threads and found in general that there is a vast collective knowledge available from the members. Most especially from those who have been dealing with this lousy, impartial, sickening disease for years.
    Some respondents seem to be very wired indeed. I hope to tap into that knowledge bank really soon. One respondent
    has chinked my Armour already, Ellie.
    Ellie, you mention the following to Douglas in a post dated 24/10/18 or there about. Regarding voice recording,,,,,
    ( I'm sure you've found Apps for text-to-speech and, if your hands aren't up to typing, there's eye gaze tech which gives full PC access (I'd be lost without it).)
    This is an area I hadn't thought of and would like to tap into your knowledge of such products.

    But first,
    Why I qualify to be here among fellow sufferers.
    My Name is Micheal Cain,,xxxxx not really,
    My name is Ben , I live in Essex. I am 64 in August, and I have ALS. Diagnosed in April this year, I am new to the diagnosis, but symptoms have been present for four years.
    Apologies for any medical term spelling bloopers.
    The earliest related sign came in 2015 when I woke one morning to experience the 'Phantom Heel' (the Latin is something like Planter-Achilles) in my left foot. Interestingly, immediately prior (3 days) to this I had removed from the sole of that foot, a Neuro-vascular Corn. This thing lay hidden under a callous for 8 years, growing, evolving, developing blood vessels, and nerve endings. I thought the pain I was experiencing was the callous, and so ignored it as a fact of life. I went to the doctors when I had reached the stage where I couldn't ground the foot at all. In preparation I heroically removed the callous to expose the underlying red flesh, and this hexagon shaped white area smack in the middle of the exposed flesh. About the same size as the end of a pencil.
    My Doctor directed me to a chiropodist who, over 3-4 visits shaved it down to nothing. From that moment I could walk pain free and without a limp,,,for 3 days.
    Now dealing with the Phantom Heel I can state, to end the corn saga. I have never experienced another moments pain or discomfort. It healed perfectly, and the callous disappeared.
    Now being able to ground the foot, I endured the Phantom heel for around 18 days, then as suddenly as it appeared, it was gone. Never to raise its ugly face again. Hooray I hear you chant in a collective hoot of praise.
    I'll say. I had complete, pain free, total mobility again. For 17 hours.
    If these last two problems are not related in some way to what you are about to read. I'll be quite dashed as I have theories.
    The very next day I lose complete control of my left knee. I labelled it 'Elvis' syndrome. At this stage there was no pain, but as it progressed it affected the leg muscles causing pain, numbness and loss of strength. I thought I had a trapped nerve, nothing more.
    Fast forward 18 months and after hobbling around for over a year, I develope 'Drop Foot'.
    For those reading who have experienced this particular nasty, you know what's coming up. For those uninitiated it effectively means the end of any future use of that leg. You now can't ground the heel, and grounding with the toes will start the muscle problems, starting with the permanently stressed calf. Then the hamstring, thigh and then, the cramps. Of course, by this stage I was on one crutch all the time.
    I maintained this level of disability and using one crutch for a couple of years with no other symptoms displaying. That was until August of last year '18.
    This is when the right leg decided, suddenly, to join the party.
    By December my right leg had caught up to the left in all areas except I maintained a smidgen of downward movement in the foot. Not being able to ground either foot at the heel, and a complete loss of all control or movement has rendered me wheelchair bound. On April 3rd, confirmed diagnosis, MND/ALS.
    If there are any members who's own experience mirrors my own in the area of symptom development.

    Welcome Ben to the “family”. No one wants to be here but we gain strength from each other and as you point out the shared knowledge is invaluable.

    You offer a detailed story of your journey so far and is widely believed that some form of trauma to the body is the trigger for MND. You also write with a sense of humour and that will help you deal with the difficulties that this disease throws at you.

    Best wishes,
    I’m going to do this even if it kills me!


      Hi Ben and a warm welcome (well, it couldn't be anything other than warm in this weather!) to the forum. It was interesting to read about the lead up to your diagnosis. We all have a different story to tell.

      Trying to keep positive, but not always managing.


        Hi Ben and welcome to the club nobody wants to join.

        If you put Voice Banking into the search box, you'll find info on the process, but do start off by asking your SLT about it as it's often, or at least should be provided/funded.

        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.


          Good evening, Ben and welcome

          As somebody has said none of us want to be here, but it is very good to be here, given the support we get.

          I am wondering if you are thinking that chain of events with your heel led to your difficulties whether I was a misunderstanding?

          On do ask away about your mobility issues - I for one have a way to go to get to that and like to see people answering questions about it because it improves my learning of what I will be facing in due course I expect.



          ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

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


            Hello Ben, welcome to this very friendly forum. I hope you find lots of advice and support here.


              Hi Ben and welcome to the forum,

              I used to go to a club in Brentwood on a. Motor bike and listen and dance to live rook groups.

              Please feel free to ask any questions or share things with us.

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

              It will only remain so if new people post and keep us updated on things that work or don't work and tips.

              Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.


                Hi Ben. You wrote a smashing first post. I had about 4 years before diagnosis also, the first 3 like you brushed off my symptoms as being caused by something else. I like your sense of humour. As Terry said it can help us to cope. 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.


                  HI Ben and welcome.
                  My journey to MND diagnosis started over 2 years ago when my wife commented on the 'slapping' noise I was making with my right foot as I walked. I then had a couple of stumbles with her grabbing hold of me to stop my falling. (She's 5ft 2in and I'm 6ft 2in!). I then did have a nasty fall or two and it was thought that my loss of control of my foot was caused by a prolapsed disc causing a trapped nerve. Over time I saw some orthopaedic consultants, had injections in my back, all to no avail. Then after a full spine MRI a consultant orthopaedic surgeon said there was no structural reason for my symptoms - I was also starting to lose leg strength - and the likelihood was that the cause was neurological. About 6 months later I had an appointment with consultant neurologist, went for blood tests and nerve conduction tests, returned to the consultant 3 months later to be told I had MND. So the drop foot was actually the first direct symptom although it was missed as such because of my history of chronic back problems. My right foot is now completely useless and I have to wear an orthotic support to hold it in place.