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Thread: Hello I'm a first time visitor

  1. #1
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    Unhappy Hello I'm a first time visitor

    Hi everyone I'm new to the Forum. I was diagnosed with MND (but not give a type!) on 14 August 2017. I'm a 51 year old female who's married to a wonderful man, lucky for me, with no children.
    My symptoms started in May 2016 when I was tripping up then loosing control of my right foot occasionally, it would slap hard on the ground, I rest for a while then it would be fine again.
    I'd also started to notice I was struggling to climb fights of stairs with my legs feeling very heavy.
    I went to my Doctor who referred me to Orthotics, then for a Spinal can - nothing found so next step Neurology.
    My appointment was months away, I then suffered dropped foot on my R/H side. Then on 31 October 2016 on our way to join friends, I just couldn't walk properly. I was swaying my body from side to side to build enough momentum to propel myself along,
    that's when I knew something was seriously wrong.
    I decided to go private as I was due to start a nee job in December. After the Consultants initial test he sent me for EMG & Nerve conduction tests. When I returned the following week witb my husband for the results, he confirmed I was displaying symptoms of MND but not enough to give it as a 'diagnosis' as it was too early and I'd need the rest repeated in 3 months. We were devastated.
    I kept my NHS appointment and start all over again I January 2017, after many EMG & Nerve conduction test, two lots of IVIG treatment, a corse of Steroids and finally a visit to the London National
    Neurolgical Hospital to have all my tests repeated, plus a couple of new ones - the out come was MND.
    I'd started my new job but in March 2017 was put on longterm sick as I was having problems walking and having regular falls, but I was having trouble getting up!!!
    Since then I have gone from walking with a stick, to two sticks, then after my left leg suffered 'foot drop' so now it affected both feet I started using a Rolater. My walking became more laboured despite doing exercises from my physio. I could now only walk around our flat, trips of any distance I'd use my wheelchair. 3 days after my diagnosis, my best friend got married, that was the day I had two falls and got stuck trying to get into our car. That was the last time I walked or stood.
    I now use a manual wheelchair, however my condition still continues to deteriorate. My stomach and back muscles are now too weak to support me and now my arms and shoulders are weakening too. I can no longer use my manual stsnd aid and now my husband has to hoist me into and out of my seat etc.
    I am totally reliant on my husband as I cannot do anything without his aid. This includes washing, dressing transferring via hoist, cooking and cleaning. The condition is now affecting my hands so much so that I have trouble holding my knife and fork.
    I would like to speak to other suffers who have symptoms that have progressed like mine? So please if you've experienced this, I love to hear from you.
    A very lost DD. xx

  2. #2
    Forum Member Ellie's Avatar
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    Welcome DD, now you've found us, I hope you won't feel 'lost' any more.

    I am sorry you've been diagnosed with an MND. Everyone progresses differently - within a year of my first symptom (hand weakness) I was in a wheelchair, had a feeding tube and speech issues - and people vary enormously as to when and where is affected next/at all. One can have a period of relentless progression followed by a plateau; there is no rhyme nor reason to it...

    On a practical level: You say you've a manual wheelchair - a powerchair would give you more independence, not to mention support and comfort. There can be quite a delay getting one, so get the ball rolling on that via your OT. There are also various ways to help use laptops and tablets if hands are weak, that's usually through SLT (speech & language therapist) and/or AT (assistive technology)

    I hope you find comfort on the forum DD. Feel free to ask questions or to share a problem.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  3. #3
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    Welcome to the forum, DD.
    As Ellie says, MND progresses in many different ways.
    Try not to feel lost - thereís always someone on here who can help out !
    Iím glad you have a lovely husband to support you.
    Take care,
    Bern x

  4. #4
    Forum Member JAY TEE's Avatar
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    DD, I am bit like you except male and my wife doing good job luckily got two sons and close friends nearby. Two years before formal diagnosis of ALS MND I had pain in left hip and assumed too long in front row playing rugby. Then left leg started to give up and struggled walk up stairs luckily we live in bungalow. Formally diagnosed two weeks after 65th birthday. I now cannot walk and talk and local Dudley Council been great I have good wheelchair from them. So if you need anything make sure you contact your MND local team. Best wishes John.

  5. #5
    Forum Member Barry52's Avatar
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    Welcome from me DD.

    Like you I had a private diagnosis then the usual long wait for the nhs confirmation. Similarly I progressed from stick to crutch to rollator and for distance a scooter or power wheelchair. My progression has been over a 5 year period but as Ellie says we are all different and you may experience a plateau period. Take the strain from your arms or your husband pushing and apply for a power wheelchair.

    You can expect much support and advice from our forum family and you will find that contact with others who understand what is involved with living with MND is comforting.

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

  6. #6
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    Welcome Darling

    You are no longer lost because you just found the best place to come for advice, support, knowledge, comfort, and friendship by a group of wonderful people that are always here to listen, and offer words of wisdom, and that truly understand what you, and your family are experiencing.

    The very best to you in the days ahead.

    CC xox
    .

  7. #7
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    Thank you all for your kind messages, it means a lot ♡♡♡♡♡. I have a power chair on order so will chase it up with my OT. Thank you all again xx

  8. #8
    Forum Member Streetwise's Avatar
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    IMG_0340.jpgMy mother was diagnosed with Pseudo bulbar palsy so apart from that starting in her head she was a lot like you, she had just started her job at a law centre as a solicitor !but her speech became too slurred - like you it raged down her left arm to her hand ,then she started to become very tired walking, was eating pureed food- then in January /February of 1998 she couldn't walk at all ,she lost her speech year before ,I started to wash , dress and give her meals about halfway through 1997. so she tried to use a hoist but she was too frightened so I lifted her then the carer started to.
    She died in the year 2000

  9. #9
    Forum Member Terry's Avatar
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    Hi Darling D and welcome to the forum ,

    Dorset contact Mnda connect and ask to speak to the wheelchair specialist, Mary.

    If anyone can speed things along, she can and will try to get the best chair for you.

    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.

  10. #10
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    Dear Very Lost
    I too was diagnosed in March and now practically live in a power chair supplied by OT. Also they supplied a ‘community bed ‘ which can raise up and down top and tail or completely so I manage to get up with bed top half at right angles. Last two weeks stiffer in legs and left arm, not made better by 3 clavicle fractures. Speech is incomprehensible and I have 2 apps for phone and iPad, plus mnda loan of lightwriter. Arms and hands weakening by the day. We changed our small downstairs loo into a wet room with many grab rails. Sleeping downstairs now. Like you my husband is stepping up magnificently. My breathing and swallowing weakening a lot now.
    I wanted to reply as we are similar and I would strongly recommend getting a power chair from OT. Hard to feel steady with fairly rapid change but I know that today is better than the days to come and acceptance arrives eventually for each deterioration.
    Love Roadahead x

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