Announcement

Collapse
No announcement yet.

Triple whammy

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Triple whammy

    Hi

    I have only just found out about this forum which is a shame.

    I was diagnosed with mnd in Feb this year - my first symptoms were in early 2016 - so it's been an awful long time waiting and wondering, with my mobility getting progressively worse...but being told they could find nothing wrong (I even had an extensive nerve test which I was told ruled out mnd).

    It was a triple whammy as I lost my husband a year ago to hospital acquired covid, the 'guessed at' diagnosis by previous drs of a stomach ulcer (which had only worsened during 15 months medication), turned out to be kidney cancer large enough that my kidney now had to be removed. After the op I couldn't maintain my breathing in recovery and kept going unconscious, so woke up to find myself on a ventilator. Scary stuff. Two weeks later whilst still in hospital I was bluntly told I had mnd. How much more can one take?

    I thought it was a relief at the time to finally find out, but now I am not so sure - I was suddenly a disease and not a person and all I heard was negative. Before I had hope and now I was being told there was none.

    Like others I have read on here, I researched and asked many questions and was astounded that so little has progressed from when Stephen Hawking was first diagnosed. There is little (riluzole) for the here and now, it's all in the future....

    Thinking about having to come up with a username, I remembered finding this:

    If you describe a person or organization as a Cinderella, you mean that they receive very little attention and that they deserve to receive more.

    And that is how I view mnd, hence the name.

    But I want to end this first post on a happy note - I'm pretty much ok with this now (most of the time), able to enjoy eating again so go out for meals as often as I can, have surprisingly become a 'gamer' playing the nintendo switch far too much and even though I am the most 'disabled' guest at certain holiday hotels that are for adults only, as long as I have a roll-in shower, I can have a really good time!









    #2
    Cinderella A warm welcome to the forum and condolences on the loss of your husband.

    It sounds as if you still have very slow progression - do you know which form of MND you have?

    Great that you can still get out and about - are you still ventilated 24/7?

    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.

    Comment


      #3
      Cinderella - welcome to the forum. I think a well thought out username is great. Mine is pretty obvious.

      Sorry that you have had such an awful time and lost your husband too. It must be so much to get your head around. I love that you are still getting away on holidays.

      Sometimes I think the reliance on medical tests for answers can prevent people seeing the obvious in front of them. It took me a long time to get diagnosed and eventually it wasn't a test that gave the answers it was just a thorough neuro examination.

      Look forward to hearing more from you.
      Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

      Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

      Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

      Comment


        #4
        Welcome to the forum ❤️

        James x
        Foxes Never Quit 💙

        Comment


          #5
          Hi Ellie

          They said ALS, it began in the right foot with eventually severe muscle cramps, loss of balance and ability to stand/walk unaided. The falls were often spectacular as you can't seem to save yourself like you usually would (I once fell onto a pair of scissors I was holding which went into my neck narrowly missing my artery).
          My right foot only - soon became like an ice block and eventually I had little movement in it, but over the last few months I am able to move these toes downwards and about half of this foot, but not upwards at all which is weird but I am grateful for any movement. I used to go for reflexology every week and I am sure this helped. (Both feet are affected now and have 'drop foot'). I now have acupuncture and feel it really helps.

          I only have to use the NIV at night currently, they said in 6 months to a year I will probably need to use it during the day for a couple of hours. When I asked about going on holiday, I was told not to fly, but this isn't correct as I've since looked it up and I think I would pass the fitness to fly test ok. But who wants to be part of all the chaos at airports currently? There are places I would still love to visit but hey, our own country has lots of lovely places too. (And I'm not sure I want all the fuss that would entail going on a flight somewhere even if I could get travel insurance as the cancer would go against me too).

          My arms/hands are the latest affected and whilst my grip remains reasonable, my fingers are becoming weak. I'm still trying to do things for myself and have a pair of tweezers and scissors to hand which can help when opening packets etc.

          But I have had to give up most of the things I loved to do - especially gardening and my allotment, cooking, arts and crafts and most of all walking. (I even miss cleaning and housework and especially hanging out washing on the line). I never learned to drive so walked everywhere and always at a fast pace - often miles every day and this is the hardest to deal with - but I have an electric scooter and whiz along when I can. Which can be fun

          Comment


            #6
            Cinderella
            I'm stuck for words but so glad you have chosen to enjoy what you can while you can. It's a really positive way of dealing with everything.

            cinders got to have fun at the ball, wear glass slippers, wear a posh frock and get the prince. Better than some that get to kiss frogs.

            Its lovely to meet you. Welcome to our club.

            😘
            when i can think of something profound i will update this.

            Comment


              #7
              Cinderella Hi yes a warm welcome to you. Gosh it’s been a horrible time for you and so sorry for all that’s happened. Being positive is massive with this condition. Wishing you all the fun possible😀😀
              I love what Denise has put above, be the princess😀😀xx

              Comment


                #8
                Cinderella Thanks for your reply.

                With those falls and your near-miss with the scissors, it sounds as if you'll fit in well here 😉

                You're absolutel right to go on a few nice holidays - would a cruise interest you? Many sail from the UK, no flights involved, and, although some don't allow NIV use/NIV use in public areas, many do.

                As you said, there are many amazing places to visit which don't require a passport or travel insurance to visit. xx
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                Comment


                  #9
                  A warm welcome to the forum Cinderella. What a terrible time you have had ! I'm so sorry for the loss of your husband and your diagnosis

                  It sounds like you have a positive attitude in spite of everything. You're right to have a holiday and see different places and it is possible , although a little homework may be necessary

                  The forum is a great place for friendship and support so it's good you've found us.

                  ​​​​​​​Love Debbie x

                  Comment


                    #10
                    Cinderella A warm welcome from me too. I am saddened by your tales and your feeling ignored. Are you not near any of the MND centres in England, are you even in England!?

                    As to travelling abroad, there are specialist insurers that would cover you, although with a high price tag. I paid well over £400, and dread to think what it will be next year. I also have a slow form of MND, but have decided that I can still reach my target age of 100 (67 now).

                    We will be moving further into Cambridgeshire, into a bungalow (who knows when i will be unable to go upstairs). Hmm, i trust i haven't just jinxed the sale!!

                    Most importantly, the market town has buses and a recently reopened (wonders will never cease) train station - buses and train access were both essential criteria! I was amazed when I saw the excellent train service around Ely. MUCH better than where we live now.

                    Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

                    Comment


                      #11
                      Hi Evelyn

                      I should be making my way to bed but having just read your post find I have to post a quick reply - yes, I am in England but my 'error' was living in Essex where drs just shrugged their shoulders (one actually said - nothing adds up - as if I was making it all up and I left in tears) and neurologists don't see you in person so can send out 2 line emails - your mri is stable, see you in clinic in a year! (They actually just called me and it is nearly 15 months....)

                      But I had to move once my husband died as I was trapped in a first floor flat, so now in Dorset and what a difference! I finally got referred for an endoscopy which led to a ct scan which showed the large kidney cancer and thence the mnd diagnosis after the op, else I would still be none the wiser and most likely not here as my CO2 levels were at critical level and I would have just gone to sleep and not woken up.

                      I love your optimism! We need more of it and less of the doom and gloom merchants...it was sort of implied that I didn't have long and 3 months entered the equation somehow, so to be later advised that in 6 months to a year I might need to have extra time on the NIV gave me some sort of timeline...the latest respiratory dr asked me how I felt in the morning to which I replied - I just feel normal. He stared at me so intently as if to say - do you know what is wrong with you, you can't say that!

                      We too are in the process of buying a bungalow as I already can't walk up the stairs....and I'm four years younger

                      We looked into me using the bus and found out I needed to go for a test to get a permit to travel before I can use them with my small mobility scooter, so shelved that one for the moment as will be moving area and bus provider probably.

                      Comment


                        #12
                        Cinderella Here's the thing Cinders - at this stage, nobody can say how long you'll live, so ignore any '6 months' or whatever, and get on with life and feeling normal.

                        Not one of us on this planet knows when our last day will be. People with MNDs die in collisions, from falls, of cardiac arrests etc, just the same as the general population.

                        I was written off years ago 😏😂😂 xx

                        PS: I moved to a bungalow, best decision ever.
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          #13
                          Exactly Ellie - it is what I have been saying to all those that visit me wanting to talk about my demise - there is life in between and when I am ready - I will ask the questions and not before - go away with all your doom and gloom. One nurse made me so angry early on in all this saying it wasn't what I wanted but what my carers did....

                          Comment


                            #14
                            Welcome to the forum Cinderella.
                            Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

                            Comment


                              #15
                              Welcome Cinderella and you are certainly a resilient and positive person, and crucially willing to adapt, both to the tough things you have had to deal with and dealing with cancer and mnd.
                              I have had mnd for over 10 years and still doing OK. I also had to have cancer surgery last year following a routine screening...quite a shock, but positive because it was very much a case of, surgery is best, if you want it, we are happy to do it, and the mnd wasn't a major obstacle, a bit more back up care 'just in case' but all went fine.
                              You will get insurance for travel with mnd, and with the cancer issues, and taking a cruise is a good idea, with some cruise lines well able to accommodate a range of supports...breathing aids, mobility scooters, hoists etc. If you have someone to travel with, train across Europe is do-able too, with planning. Remember, your body, your life, your say xx

                              Comment

                              Working...
                              X