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  1. #11
    Forum Member
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    May 2019
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    70
    Hi again. I saw my GP yesterday as I fell on Thursday and hurt my right arm. I did mention my chronic insomnia and anxiety/ panic attacks and she has put me back on a small dose of antidepressant that has a reputation for being sedative and helps with sleep. I did see a counsellor this year, ironically when my symptoms started. But it took a year before my first appointment after requesting with my GP!!!. It is reassuring that there is the specialist MND clinic. My next appointment is a few weeks away so I will be discussing all my concerns. Even though I am still independent I think I need to talk to social services as well. Yes I have always been interested in trains/enjoyed train travel, especially steam trains.

  2. #12
    Forum Member Gillette's Avatar
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    Mar 2019
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    Greater Manchester
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    691
    Quote Originally Posted by panniertank View Post
    Yes I have always been interested in trains/enjoyed train travel, especially steam trains.
    Yes, I thought so. (Guess who is the mother of a lifelong train enthusiast!?!)

    It's good that your GP has given you something to help with the anxiety and insomnia. As for a counsellor, do you have a self-referral mental health service in your area? Alternatively, are you able to ring the counsellor you saw earlier this year, or the MND nurses, to try to access some counselling?
    Dina

    Trying to keep positive, but not always managing.

  3. #13
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    Feb 2019
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    243
    We live quite near to the west Somerset railway, and we follow a chap called Admirals corner on you tube. And funny enough he has just put on a video of a panniertank. Worth a look if anyone is interested.
    Sheila

  4. #14
    Forum Member Gillette's Avatar
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    Mar 2019
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    Quote Originally Posted by Sheila View Post
    We live quite near to the west Somerset railway, and we follow a chap called Admirals corner on you tube. And funny enough he has just put on a video of a panniertank. Worth a look if anyone is interested.
    Sheila
    Hi Sheila,

    I used to live in Wellington in Somerset. Where do you live?
    Dina

    Trying to keep positive, but not always managing.

  5. #15
    Forum Member Ellie's Avatar
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    Oct 2012
    Posts
    3,492
    Hi Pannier and welcome.

    Sorry you've had to join us. You've certainly had more than your fair share of woes

    Have you been referred to, or made contact with your local hospice? They are usually great places for providing support for people like us with life-limiting conditions - including day hospice, nursing, physiotherapy, occupational therapy, social worker, counselling and complementary therapy - so it is a good idea to be linked in to one.

    If you don't know your local hospice, search on https://www.hospiceuk.org/about-hosp...find-a-hospice

    Look after yourself.

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

  6. #16
    Forum Member
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    Feb 2019
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    243
    Hi Dina,
    I live near Bridgwater. I know Wellington it is nčar Taunton, well fancy that. It is a small world, Dina.
    Sheila.

  7. #17
    Hello there, so sorry to hear about your diagnosis. My husband was diagnosed last May, it took us a good 6 months to come to terms with.
    We have received excellent care and I hope you do to. Share your worries with all the professionals, hopefully you will get great care too.
    My husband has a severe spinal condition as well. He has ankylosing spondylitis. At first all his symptoms were put down to this and we thought so too. The MND diagnosis came as a shock!
    This forum is a great source of experience and advice, you are never alone here.

  8. #18
    Forum Member
    Join Date
    May 2019
    Posts
    70
    Hello music mans wife. I am so sorry your husband was diagnosed with MND. Incredibly my spinal condition is also AS. I was amazed that my symptoms were not due to AS spinal or nerve damage. Was your husband on anti tnf injections? I was amazed the symptoms were not due to side effects of those injections as well. In the patient leaflet it stated that neurological symptoms were a very rare side effect with symptoms similar to multiple sclerosis. I discussed all that with my neurologist and rheumatologist but they ruled it out. I had been on enbrel for several years and then it was changed to benepali. I took myself off it due to concerns about its neurological side effects and my back pain hasn't worsened. Sheila and Gillette. The WSR is probably my favourite steam railway. I would enjoy the ride even if a heritage diesel was pulling the train. The scenery through the quantocks is beautiful and the engines make great sounds working the steep inclines. They have told me they have wheelchair accessible coaches with slope access etc. I hope I find the courage to visit this year. Whilst I can still drive I have lost the courage to go too far on my own!!

  9. #19
    Forum Member Gillette's Avatar
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    Mar 2019
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    Greater Manchester
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    Hi Panniertank,

    The WSR certainly is a beautiful route. I think it's great that they have a wheelchair accessible coach. I hope you do manage to get there again but I can understand your concern at driving quite a distance.
    Dina

    Trying to keep positive, but not always managing.

  10. #20
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    Feb 2019
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    243
    I live about 9 miles from The Quantocks, and they are beautiful. Someone I know spent Saturday on the steām trains, and she thought it was wonderful. But I know what you mean about travelling it is difficult. I find it hard just being a passenger.
    Sheila x

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