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    Hello

    Hi all. My name is Lesley and I am 57 from Hove. I often sit and read the posts on here and keep thinking I want to ‘introduce myself’ so here goes. I was diagnosed last September. I had symptoms for nearly a year before but thought the changes in my arm was as a result of a ‘frozen shoulder’ from the year before. It was a slow progression - losing strength in my right arm and not being able to hold my arm up. I then noticed it in my left arm and left leg. I can still walk, but limp quite badly, and it has to be on flat services and not too far. I have been supplied with a wheelchair but haven’t been brave enough to use it yet! My arms are getting worse and I now struggle with doing simple things like doing my hair, getting dressed, eating, carrying things and household jobs. When you have always been independent it’s hard to admit to yourself you can no longer do things. Hardest thing for me is losing my independence from not being able to drive. I am still awaiting my PIP and then can look into a modified car. I am very lucky in that I have a great husband who helps me and a loving family (two sons 28 &25) and many friends. The support that I have received from the local NHS MND team and the MNDA have been amazing. Like many others I feel a bit cheated, due to the lockdown, of being able to do things over the last few months - when I would have been able to!
    It’s so nice that there is this little special ‘community’ where we are able to chat and share things.
    We are now starting to look into a wet room and either a lift or stair lift so I am sure I will have many other questions in the future.
    Its certainly been a rollercoaster of emotions over the past 6 months and I admire some of you that seem so strong. I try to show to others that I am coping but inside I am still crumbling!


    #2
    Hello Lesley, thank you for making your first post. As you have been reading posts for a while you will know what a great bunch of people are on here. When you are ready ask away and someone will always offer advice or share their experiences with whatever you ask about.

    One thing from me would be for you to try and encourage your husband to either join the forum or read it occasionally. As Carers there is much on here we can learn from.

    Look forward to chatting with you

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      #3
      Hi Lesley, nice to meet you (but sorry of course it has to be for this reason.) Yes I hate losing my independence too, and hope you can get a modified car soon, it certainly helps keep your horizon bigger. Glad you have some good support though. I found the shock of diagnosis particularly hard, but this eased over time. Although the progression in mnd in me is relentless, I haven't (yet) encountered some of the difficulties that others on here have, but it is good to read people's suggestions to cope with these things. All the best, and hope to be hearing from you on the forum. Heather x
      Diagnosed July 2020, ALS bulbar onset.

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        #4
        Hi Lesley,welcome to this forum.I was diagnosed June 2020 and shared many ot the emotions you describe.Like you are thinking about I did my research on stairlifts, through ceiling lifts and changing bathroom to a wetroom.
        At your own pace I would encourage you to do your research into these and ask on here if you want to know how others got on .
        I hope you get the rate of PIP you need to look at the motability scheme.I did my PIP application over the phone and due to MND got awarded the benefit enabling me to get an adapted car that if and when needed I can ride in the back in a wheelchair.I am currently ok in passenger seat.
        So pleased you have a loving family and friends to support you Lesley.
        Best wishes
        Mary

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          #5
          Welcome to the forum Lesley. I have followed a similar path, although I've also lost my speech and swallow. I feel like I'm taking a bit of a risk compared with some of the others on here in that we aren't planning a wet room because the bathroom is upstairs and I may not be able to get to it before long. We don't have a downstairs room that's suitable, we don't want the cost and upheaval of a lift and we certainly don't want to move house. So I'm probably looking at strip washes when I can no longer get upstairs or a tin bath in the kitchen. 🙄
          Each day is made easier with a bit of humour.

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            #6
            Hi Lesley Welcome to the group. Take it day at a time. Small pleasures. xx

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              #7
              Hi Lesley

              I hope that you have had a lovely Easter weekend x the spring sun is very welcome although we have had snow and hail today and I live in Devon.

              You will find that we are a friendly bunch and feel free to ask about anything however trivial it may seem.

              Take your time and research carefully before you commit or ask on here.

              Sending you positive vibes and thoughts. I have found that focusing on the positive elements in your life helps so much. I am lucky to have like you a wonderful family and good friends.

              Much love x Sarah xx

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                #8
                I’m glad that you felt strong enough to write your first post Lesley, It can be hard to open up to strangers. But won’t be strangers for long I’m glad to say.

                I too was very independent and feel similar to how you described. My husband, like yours is very helpful.

                Good luck for getting the higher rate of PIP and an adapted car. Like Mary I’m still able to travel in the passenger seat but have the option of drive up the ramp in my powered wheelchair and ride in the back when it’s necessary.

                Definitely look into getting a wet-room. It is more help than a can say. About whether to get either a stairlift or through-floor-lift others can advice better than me. All I know is that the space available and design of your home are defining factors. Good luck with that research too.

                Looking forward to getting to know you. Lynne x
                ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                I'm staying positive and taking each day as it comes.

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                  #9
                  Hello Lesley and welcome to the family. Together we have good and bad times but we're still together till the end. 😁
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                    #10
                    A warm welcome to you, Lesley, and congrats on being brave enough to make your first post 👍

                    It's lovely to hear that you have such wonderful support, that makes all the difference, doesn't it.

                    We can all identify with what you're going through and one thing I will say is, horrible though it is to admit you need a wheelchair, I went from gingerly shuffling and holding on to my walker (or using walls and railings as supports, like a drunk 😏) to zipping around with greater independence and safety in my wheelchair...

                    Looking forward to getting to know you.

                    Love Ellie.
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                      #11
                      I remember that feeling of going from being that same wobbly dangerous person who was frightened of falling to getting my first power chair and whizzing off totally independent again. I used to call it my Avatar moment which is when the paralysed soldier straps into the capsule that gives him legs again. Ellie that is what I felt when I whizzed off x

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                        #12
                        Yes, weird as it sounds, wheelchairs can give you your independence back 😄 (although all of us in wheelchairs would much prefer working legs, obvs!)
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                          #13
                          Thank you all for your welcoming words and kind wishes. 💕

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                            #14
                            Hello Lesley and welcome to our special club. From your post I understand that your walking is difficult and you have a wheelchair. Please don’t be afraid to use it or some kind of walking aid as a fall can result in serious injury. Looking forward to getting to know you in the future.

                            Best wishes,
                            Barry
                            I’m going to do this even if it kills me!

                            Comment


                              #15
                              Hi Lesley, a warm welcome from me. Your symptoms started very similar to mine, but yours seems faster. It has been one big emotional roller coaster for me too. My wife has no interest in coming on this forum, but i think she would understand more if she did, so please try to encourage your husband.
                              Diagnosed 2nd Jan 2020
                              Both arms/shoulders affected, left worse than right.
                              Progressive Muscular Atrophy suspected

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