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Jonboy

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    Jonboy

    Hi , my name is Jonathan (22/08/1943)
    I was diagnosed with MND March 2019, after months of doctors appointments, my past life style was a very fit / healthy way of life, I cycled 4/5 miles each way to work every day on alternate days ran to work, ran loads of 10k races, loads of half marathons, dId 1 full marathon, have been a member of the Rambler’s for 20 years +, leading walks of 8/10 miles regularly, group / area. secretary , even since I retired in 2008 I was still running 6/7 miles 3 times a week,
    then in 2018I started having problems walking , starting with leg cramps, waited 1 month for doctors appointment, doctor advised more salt more water, still no change, bought an exercise bike thinking it. was lack of exercising, my previous exercise timings I could last 30/40 minutes , but could only do 3/4 minutes,
    so back to doctor’s who referred me to a vascular surgeon ,Waited 1 month for appointment,thinking it was a circulatory, waited 1 months had scan waited another month for results ,waited another month For response from my own doctor, an appointment was made for a spinal scan, ( Yes another month ), attended Sunderland City Hospital, Had a physical by nurse prior to scan, then the nurse discussed her physical test diagnosis with the spinal consultant, I was informed by consultant, I was not going home and bed was was being found for me , I was in 3 different bed/wards that night, my wife(Irene)had to go home alone, bemused at what had happened, for the next 2 weeks l had ,daily scans, tests , visits from numerous doctors/consultants ,
    10 days after first entering hospital the consultant ask to have a meeting with wife and I, My daughter decided to attend also, when she declared that I had MND, I/we we we’re shocked gobsmacked, Irene and my daughter took it badly, I myself was not a happy bunny, but thinking back, I was 76 have had a very good life, a wonderful marriage, had 2 great kids, with there own family, life is a bugger, but life can still go on, I am not a quitter, I survived stomach cancer 2012, and trapped bowel 2013, both requiring major surgery, today my legs are completely useless, Thankfully my upper body is still reasonable ok, but staring to fail,I am confined to a wheelchair,(manually powered by myself at the moment )cannot walk, cannot stand, Irene helps me transfere from wheelchair to other seating areas & bed, even including the car, (which enables me to get out and about, ) via a transference board suggested and provided by our local occupational nurses, they also suggested a shower chair/commode for use in recently converted bathroom to wet room,
    as said previously my legs are useless, while my arms and hand and brain is ok, I can sane by continuing to be of help to our Rambler’s group by being webmaster for the 2 websites,
    and continue to paint watercolours , am about give acrylics a try,
    last Xmas Newcastle MND centre asked me to do a Xmas card for them for further publication to be sent out to other


    As I also said previously I am no a quitter, I intend to give this MND a run for it money
    maybe very down at times, gotta keep fighting back





    jonathan

    #2
    Hi Jonathan and a warm welcome to the Forum.

    It sounds as if you are well set up and have great support, not least from the wonderful Irene 👼 🥰

    If I may suggest... Get back in contact with wheelchair services and order a powerchair - there are special Neuro wheelchairs which come with an enhanced spec as standard - apart from being much more energy efficient for you than a manual chair, often they can take a while from order to delivery.

    You've a great attitude, that'll stand you in good stead.

    Stay healthy.

    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


      #3
      Hi Jonathan

      A very warm welcome to this marvellous group of friends, where you’ll find huge amounts of information, empathy and support.

      We share a similar age, early stages of the route to diagnosis and, by the sound of it, current symptoms. But I can’t claim to match your earlier fitness, artistic ability or kids!

      As Ellie says, do try to get a powered neurochair soon. My OT got me a Salsa Mini several weeks ago. It’s absolutely super – very manoeuvrable indoors and with a good range outside.

      Hang on to your superbly positive attitude!

      Doug

      Comment


        #4
        Hi Jonathan and welcome to the forum.

        From the description of your lifestyle you fit the often used phrase by the medical profession “I don’t know of a couch potato getting MND”.

        I am a kindred spirit as I was born and grew up in the northeast but moved with my job in my thirties. My father wasn’t keen on football but my uncle was a Sunderland supporter and as a child he took me to Roker Park (long before the Stadium of Light). As we lived north of the river Tyne I didn’t display my red and white scarf when going home.

        I’m pleased you are under the care of Newcastle MND centre as they have a good reputation for symptoms management. My friends on this forum have offered good advice about wheelchairs and you will find lots of information if you put a key word into the search box at the top right hand side of this page.

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

        Comment


          #5
          Good morning Jonathan,

          Welcome from me.

          I am also not a quitter but this disease does sometimes get me down so if when it does you please come back here and ask for support.

          It certainly sounds like it's time to give the wheelchair services a push especially as it sounds like you're losing some upper body strength as opposed to lower body strength

          This is a foreign country to me because I'm the other way round, busy losing strength in my arms whilst my legs continue to function.

          Please keep us in touch with how you develop and how you get on
          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


            #6
            Hi again Jonathan

            One thing to think about if you haven’t already is voice banking.

            Given your rate of progression, it’s probably not urgent. But it is something best tackled early while your voice is normal. The MNDA have a leaflet on it:

            https://www.mndassociation.org/?seng...anking+leaflet

            There are two commonly used systems in the UK:

            https://www.acapela-group.com/
            https://www.speakunique.co.uk/about-us/

            and you may be able to get financial help from the MNDA to pay for it.

            Stay safe!

            Doug

            Comment


              #7
              Hi Jonathan. Belated welcome to the forum from another one born 1943. When I was still able to get in and out of the car, I found that a “swivel “ cushion was really helpful. Ask your OT.

              Comment


                #8
                Welcome Jonathan

                it sounds like you have a good attitude still which is great news for you. Keeping active will be good for your mental health. Keep doing what you can for as long as you can.

                Madge.

                Comment


                  #9
                  Hi Jonathon

                  Thank you for your update, it really helps us "newbies".

                  Just newly joined wife of Thomas, who was diagnosed last month. Husband was also very fit, we went to the gym together. Walking and yoga. We blamed all sorts, pulled muscles and SAD for lack of energy. Just waiting for specialist nurse (to discuss and action on benefits) and that we need to move as rented place unsuitable for future wheelchair use. Not only do we have stairs, there are stairs down to the bathroom!!!

                  We are as a couple are being as positive as we can, now we know what it is. The not knowing was stressful. Extended family is gutted for us but we are just dealing with stuff one day at a time. At least we can still binge watch Game of Thrones together, although we really need to look at the sofa, just impossible to get out of. The bath is just no way.

                  Glad you got to 77 and beyond. keep on keeping on

                  Thomas is 56 so I am slightly (who am I kidding) massive annoyed at the suprises of life. His family history is one of long lived healthy folk, into their 80s and 90s. His mum who is turning 80 next year is inconsolable and we can't visit due to COVID.

                  All the best

                  Dee

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