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Thread: back from holiday not looking forward to mdt meeting

  1. #1
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    back from holiday not looking forward to mdt meeting

    just come back this afternoon from a short break a few miles away in a log cabin fishing and hot tub.had a great time taking our grown up kids with us.hubby cant use his arms very well at all so the kids did their first ever fishing.son caught 11 fish but then the girls caught carp 5lb and 8lb so girl power!!.we played board games sat in the tub and it was really good for all of us.hubbys hand felt much better bit easier to move(he has swelling and stiffness ) so im digging the footspa out tonight and sticking his hand in it.the kids cooked for us ,we were on farmers land and no internet.pure bliss.we love it there ,been last 3 years so made the most of it.now its back to reality.unfortunately just before we went away the ot rang and said shed like to visit before our mdt meeting.great i thought but she was quite negative.i had stated over the phone when confirming appointment with secretary we wanted only to be told certain things in our own time as we are still struggling with the diagnosis.well she asked for how he was diagnosed and i said we were pleased because he had been given riluzole which was promising and she said well it seemed to be in the beginning but she didnt think anybody took it any more as it didnt make much difference.i was bloody furious ,do we have to have the ot assigned or can we ask for a different one as after shed gone i felt so depressed and neither of us said much the whole weekend. that glimmer of hope was demolished in a few words.i just hope the rest of the team are better as its really knocked my fighting spirit

  2. #2
    Forum Member pete's Avatar
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    Hi Caz

    Dont let them get to you, and yes you can change OTs, and she is talking rubbish , I take riluzole and it works for me , I guess they see so many people with MND and pretty much class us all as having the same progress ,I think if you talk to folk on here or anywhere , No one knows that, much about this disease only where it goes finally ,like all other so called terminal diseases, But its the time alloted to you that matters and if you live each day as it comes and face the challenges ,who cares what they think , you know and so does your hubby, if he feels well taking riluzole then thats fine I know for sure its helping me , so wishing you all the best, so back on your feet and keep positive , similar thing with me only speech therapist told my wife not to expect me to be here much longer (nice eh) well still here ? and she was moved to another hospital speaks volumes dont it , good and bad in every job Hang in there caz

    pete.
    All I need is a miracle

  3. #3
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    Hello

    I am new to this what is an MDT meeting?

    Jane

  4. #4
    Forum Member Derek_'s Avatar
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    Ello Caz,

    I take riluzole, i think it is 'elping me. Tell the OT to take a run and jump, i did, now i have a very helpful one.

    Derek

  5. #5
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    Our first meeting with an OT was way back in 1997,He came to the house talking about equipment and building extentions on the house then asked me quietly.................How long do you think John will live cos if its not long it will be a waste of money building the extention.................Needless to say he was shown the door and through the years we have had quite a few OTs,some better than others.Still havent got an extention cos we never wanted one in the first place xxxxx Irene and John xxxx

  6. #6
    Forum Member computatec's Avatar
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    Hi Jane

    I think it means a Multi Disciplanary Team, but not sure.

    Clive
    Living with MND. There is a solution to every problem - never ever give up.

  7. #7
    Forum Member pete's Avatar
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    Clive

    Got it in one ?

    Pete
    All I need is a miracle

  8. #8
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    I had to complain about the OT service for Peter.
    One visited straight after diagnosis and left a pick up stick. I rang a few weeks ago because Peter could not open unlock/lock the door without difficult 2 handed action. Needed urgent attention but, despite ringing several times a day for 4 days, the OT did not get back to me. It turns out they closed Peter's case after giving him a pick up stick. It beggars belief, think it is statistics and reducing people on caseload. I wrote a strong letter of complaint and now have a very responsive OT but answer to my complaint. I will pursue it though.
    Peter takes Riluzole and has had no side effects. How an you know if it's doing any good with a on diction that varies in its' impact, speed and intensity?
    To be proactive and questioning is essential in my opinion from only 4 months of living with the diagnosis.

    Magic

  9. #9
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    thankyou everyone for your kind words it has helped a lot..Iwill ask the specialist next week if we can have another ot .i know they must have a hard job to do but surely compassion should be an important part of their job role and not doom merchant .magic only last week i bought a gadget for hubby called key turn as he cant lock/ unlock doors .you put the key into a kind of curved handle and it really works well. both arms are affected and luckily lock is low on door.cost about 4 pounds from amazon.last week my sisters came and fitted rollerball catches in doors downstairs and put round knobs lower on doors as he cant lift either of his arms to reach door handles.they said they will start a new career and call themselves bodgit and scarper!! i then did the bathroom door myself but the knob fell off aaaargh so they said i could join them and we can call ourselves bodgit scarper and leggit (my sense of humour is returning hoorah !)hoping to get a sling next week to help him.ot said she probably could find one in the cupboard???will keep you posted xx

  10. #10
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    Love it bodger, scarper and leggit. We did order the key turn gadget and it's brilliant. We do not tend to close internal doors except the bathroom and that has not presented a problem. Just ordered elastic shoe laces and a device for holding playing cards.to help with difficulties. Have surveyors coming in the next few weeks to assess for hoist tracking aand a through floor lift. Very diddicult as Peter not fully aware of longer term outcomes of condition. One day at a time. Thanks for the giggle.

    Magic

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