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Thread: Recently diagnosed

  1. #1
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    Recently diagnosed

    Hi All,
    I am 39 years old and have been diagnosed with ALS in January. Apparently the disease has started two years ago but it took ages for me to get diagnosed. I have weakness in my left arm and left leg and mild weakness in my right arm and leg.

    I am able to walk but need to wear a splint due to left foot drop. I feel quite wobbly when i stand in one place. My speech is not affected. Breathing not sure as I am being told different things but I do not get breathless.

    I understand everybody is affected differently but really not sure wether I should start planning things for the future now or wait and see.

    Thanks you

  2. #2
    Forum Member Terry's Avatar
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    Hi Arta and welcome to the forum,

    Sorry to hear about your recent diagnoses and your problems.

    Any planning that you can do would be good but you Mnd doesn't seem to be a fast type.

    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.

  3. #3
    Forum Member Shaun's Avatar
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    Hello Arta
    I was diagnosed 4month's ago and it's information overload ,I spent all of December planning everything from pet insurance plans to funeral plans and it was getting me down, so I stopped, I would suggest check any insurances you can call upon when ready, scope rather than plan, do it at your pace, and ask questions either on here or with your MNDA group.
    BUT DO make plans with your family, days out, holidays, something nice for you
    S.

  4. #4
    Forum Member Barry52's Avatar
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    Hello and welcome Arta.

    Sometimes diagnosis takes too long and often it depends on where you live. If you are fortunate to be under the care of a specialist centre in MND then the process is quicker.

    As Terry has said it is not a bad idea to be prepared but don’t forget to live your life to the best of your abilities. Our friends on this forum will help answer any questions you may have.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  5. #5
    Forum Member Lynne K's Avatar
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    Hi Arta, welcome to our forums. You sound much like I started off with this disease. When you feel up to it some planning is good but don’t leave it too long. A consideration of how appropriate you’re environment will be for you later on is vital. In particular do you have somewhere downstairs where there could be a wet-room and bedroom? Adaptions potentially open a can of worms, take an eternity to complete any are financially challenging. Grants are available depending on your situation. It’s best to think about this sooner rather than later.

    Voice banking is another thing to plan to do soon while your voice is still good. The earlier done the better I think. I’m glad that I did this since my voice lets me down sometimes now. I’ll be using my speech software (Predictable) very soon. Please put the subject in the search field at the top. You'll bring up lots of discussion about this.

    I think that these two are enough to deal with now, the rest could come later.

    Good luck with your research and let us know how you get on. Love Lynne
    Last edited by Lynne K; 27th February 2020 at 09:16.
    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.

  6. #6
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    Hi Shaun, thank you for your reply. I've started doing that straight after my diagnosis but it was affecting me emotionally and getting me down a lot so I kind've stopped but wasn't sure whether is a good idea.

  7. #7
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    Thank you Lynne.
    I have been told about voice banking by the MND nurse form NHNN so hoping they organise the appointment with the SLT soon.

  8. #8
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    Thank you Barry.

  9. #9
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    Thank you Terry.
    I have so many question about the progression but I guess no one will be able to let me know.

  10. #10
    Forum Member Ellie's Avatar
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    Hi Arta,

    Sorry you've had to join the Forum but a warm welcome to you nonetheless.

    I know it's easier said than done but do try and focus on your day-to-day life as it is, and not just on the fact you have MND.

    Plan trips, like Shaun said, and be nice to yourself.

    I was diagnosed in 2007, a few weeks after my 38th birthday, a year younger than you and progressed quickly, but obviously I'm still around (causing trouble) so that shows just how hard even guessing one's prognosis really is...

    Are you in for any clinical trials - newly diagnosed have the widest choice of trials, so ask in your Clinic.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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