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Thread: How to deal with those mental demons?

  1. #1

    Unhappy How to deal with those mental demons?

    Hi hope you are all doing ok?

    I just got a call from a GP at my surgery who I've never met to discuss their role and responsibilities to me as I'm recently diagnosed and things just kicking in with the various referrals and letters going back and forth locally to get support in place.

    I saw Prof McDermott and the lovely team at Sheffield on Tuesday and came away feeling ontop of my game and strong in so much as the breathing tests they did were ok and I've had no other problems other than being in a wheelchair because my legs are both weak now. Then this GP rings me out of the blue and is very mechanical and matter of fact about things to the point where he put it to the front of my head again that I do have a terminal disease and that until I'm seen by the Neuro rehab doctor we won't have a clear idea of whether I've got months or years to live?? I have been told by Prof McDermott that I have a slow variant of PMA so he would expect nothing will change dramatically quickly? I told the MND team nurses that I'd booked a holiday next April and they were fine with that but because I mentioned to the GP today that the MNDA benefits team asked if I had been given a DS1500 the GP said it may not be appropriate to my case BUT to see what the Doctor at the therapy centre and the physio think when they've seen me?! I got a bit defensive and explained that I certainly expected to be here in 6 months time and not been told to the contrary but he said again ' we will have to see' ??

    Now I can't get that out of my head and I'm tearful again. First time since just after my diagnosis in May .Any advice from anybody on how to cope with this new demon trying to screw with my head??

    Jo xx

  2. #2
    Forum Member AndyB's Avatar
    Join Date
    May 2017
    Stone, Staffordshire
    Hi Jo

    I've not seen my GP since I was diagnosed over 2 years ago. With MND being so rare your GP probably has little experience of this disease. You will get far better advice and guidance from your MND nurse who deals with MND patients day in, day out.

    As you're recently diagnosed your emotions will be all over the place, I know that mine were, but in time things will settle down. As for how long we have left, none of us know, MND or not.

    So, keep smiling and stay positive.

    Andy x

  3. #3
    Forum Member
    Join Date
    May 2018
    Hi Jo,
    I am so sorry for your insensitive treatment. We have to fight hard to stay positive and cheerful , especially when it is so new and raw. I hope you get your lovely, upbeat attitude back soon.

    I been issued with a DS1500 but it was clearly explained to me by the MND nurse so it wasn't alarming (well not much!). It means you can claim benefits without having any further assessments. My GP has been in touch but it was just to say to contact them if we needed anything.

    Every professional I have seen has said that the rate of progression is impossible to predict and that everyone is different. As Andy says none of us know what tomorrow will bring.

    I have sent you a PM , its about wedding outfits !

    Take Care
    Love Debbie x

  4. #4
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Newark on Trent
    Hello Jo,

    Andy is right in that your gp will probably have little experience of MND. Statistics show a gp’s average exposure to an MND patient is one in their career. I would ask him. From what you say it’s unlikely that your doctor will issue a ds1500 however under the new rules, campaigned for by MNDA, all recently diagnosed patients with MND (pma and pls are classified as variants) qualify for benefits. Those already on benefits may have to undergo reassessment but there is a campaign to overturn this.

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

  5. #5
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Hi Jo,

    Your GP probably just saw 'MND' and assumed you'd the bog standard form of MND. Notwithstanding the fact you were treated appallingly, he wouldn't have the knowledge that the eminent McDermott does - if McDermott said your PMA is slow and likely to remain so, that that and focus on it.

    Don't let the bees get you down !!

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

  6. #6
    Forum Member
    Join Date
    Jun 2018
    my doctor has just issued me a ds1500, i'm assuming its a short cut to benefits?

  7. #7
    Thank you Debs!

    I feel better reading the replies to my thread. I hope you're doing ok? I can understand that the way you were given the DS1500 and having had it explained it wouldn't leave you wondering about what was going to happen? I have been very down earlier today and feeling hopeless. I perked up a bit after reading on here tonight. I think the GP was really tactless actually and I'm just going to try focus on what the Prof told me. I've booked a cruise to New York for April next year so I better still be here!!!! I tried to get one sooner but the Queen Mary 2 only has a few adapted cabins and they sell out as soon as they go on sale. So the MND clinic nurses said that was great! I felt really good then the GP says that today!? Anyway got to remember that people are being given the ds1500 forms to be able to claim so it's just down to this GP not knowing his stuff in this regard?

    I looked for your PM but can't see it? When did you send it? Your last one was about meeting up and not on our bottoms!

    Love Jo xxx

  8. #8
    Thanks Ellie,

    Yes the eminent McDermott indeed. I've tried to keep him in mind all day. I feel a bit better tonight but today was a poke with a sharp stick and harsh reminder. Got to get busy busy again and focused. Hope you're doing ok?

    Lots of Love x Jo xx

  9. #9
    Thanks Barry,

    I love getting advice from you. You are very calming for which Iam very grateful

    All the best xx Jo

  10. #10
    Yes I am now learning that this is not an entirely bad thing. My GPs delivery just requires softening

    All the best
    Jo x

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