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    #16
    Hi Dina,
    I live near Bridgwater. I know Wellington it is nèar Taunton, well fancy that. It is a small world, Dina.
    Sheila.

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      #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.

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        #18
        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!!

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          #19
          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.

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            #20
            I live about 9 miles from The Quantocks, and they are beautiful. Someone I know spent Saturday on the steàm 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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              #21
              Hi,
              Am rajesh from India, an MND patient for the last 30 years, very interested friendship.

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                #22
                Hi Rajesh, welcome to this very friendly forum. I am sure we will all find lots of things to talk about.
                Best wishes
                Sheila.

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                  #23
                  Hi Rajesh. Lynne
                  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.

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                    #24
                    Hi, good morning, what is your present stage, can I know about your family.

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                      #25
                      Originally posted by Kanathil View Post
                      Hi, good morning, what is your present stage, can I know about your family.
                      Hi Rajesh. Sorry, was your question for me ? Apologies if it wasn't. But if it is then I am at the early stages of MND. The symptoms were very very subtle during 2018. They then suddenly worsened in September;- poor balance when walking/weakness in right leg. Slightly slurred speech and slight loss of dexterity in right hand.
                      I am in my mid fifties and single. My dad is passed away and my mum is slightly demented and in a care home. I have a sister but her husband is totally paralysed following an accident where he broke his neck. I have nieces and they have babies/young children to look after. Incredible you have lived with MND for 30 yrs. how have the symptoms progressed over that time?

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                        #26
                        It's 5 months since my diagnosis and I still can't come to terms with it. I can still drive and walk at the moment although my balance is bad as well as the strength of my right leg. I have slightly slurred/slow speech and slight loss of dexterity in my right hand. I just don't know how I will cope as I become more disabled and/or wheelchair bound. I haven't noticed new symptoms since these ones started suddenly last September. But I think I am finding it increasingly difficult to walk outdoors and some days I am just pottering around the house and don't have the confidence to go out. I am not making the most of my life and am devastated that the best of my life is over and I am only in my fifties. Before my diagnosis I had read briefly about MND but I ruled it out as it was so rare and I didn't have symptoms like fasciculations (twitches). My biggest fear was MS . But nothing showed up on my brain MRI scan, my blood tests, and my Emg and nerve conduction tests and spinal MRI scans. So I was reassured by nothing showing up on my tests and shocked by my MND diagnosis;-I had forgotten or didn't realise that it was diagnosed by a process of elimination. So my positive test results were actually a negative!!

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                          #27
                          Hi Panniertank, you sound similar to how I started off but got discharged by first neurologist and apparently 10 months later another neurologist diagnosed me. I'm still walking indoors with a walker, just about but as you've probably seen from my other posts, recently using a wheelchair oitside. I'm sorry that the shock hasn't left you yet. If you haven't done so already ask your OT to get you a walker. You'll feel safer going out with it. I used to be able to lift my 3 wheeled walker into my motability car when I was driving myself somewhere. I can't lift the 4 wheeled one but using it is more stable. The advantage of the 3 wheeled one as well as being lighter it's also more manoevrale. But it can tip over. I hope that you feel more cheery soon. Take care, Lynne
                          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.

                          Comment


                            #28
                            Hello, Panniertank,

                            I'm so sorry that you are still struggling with your diagnosis. It is such a lot to deal with, especially as you live alone. Have you any opportunity to talk through your worries with any of your healthcare professionals? If you are having input from the community palliative care team perhaps they have a counsellor you could talk to? Also, the community OT may well be able to help you explore your options about care and other practical things you are understandably worried about.

                            If you do not yet have contact with your community palliative care team, I would suggest you ask your GP, MND consultant or MND nurses for an urgent referral.

                            Please don't forget, Panniertank, that we are all dealing with MND and we are here if you need us.
                            Dina

                            Trying to keep positive, but not always managing.

                            Comment


                              #29
                              Thanks Lynne and Gillette. I have asked about walking frames but my physio's don't feel I am at that stage so they have given me walking sticks. I do have access to palliative care at my MND clinic. I have spoken to many of my healthcare professionals about my concerns and worries. Trouble is I think I am a control freak. I don't mean controlling other people;-I mean if there is any aspect of my life I don't feel in control of it causes me anxiety. It was very worrying to be diagnosed with and live with ankylosing spondylitis. Just can't believe I have MND as well now!!

                              Comment


                                #30
                                Hi Panniertank, have you actually asked your palliative care team for a referral to a counsellor? I really do think you need a safe place to be able to talk about your worries and anxieties. Your MND may well be adversely affected by worry and anxiety: I know that mine certainly is.
                                Dina

                                Trying to keep positive, but not always managing.

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