Announcement

Collapse
No announcement yet.

Quick hi & intro!

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Quick hi & intro!

    Hi all. I’m Sarah, aged 50 & recently diagnosed. I live with my wife Sue & our 2 cockapoos & 2 cats just outside Cardiff. We had only recently moved to a lovely new house in the country, & I’d just secured the job I wanted - everything had fallen into place perfectly - when this happened. Typical! Obviously we’ve been through some dark times adjusting since diagnosis a month or so ago, but are now focusing on remaining as positive as possible. My wife is being amazing - I genuinely hate what this is doing to her as much as it is to me, if not more so,

    I’m still walking but only just so am being provided with a wheelchair but I also want to get a 2nd hand mobility scooter. My speech is rapidly deteriorating too & I think I find this the most distressing of all as I don’t sound like me any more. And I get really embarrassed when out & about if I have to speak to people - even if it’s just at the till in the supermarket. I’m currently doing voice banking but even so, the loss of speech is what I’m finding hardest to come to terms with.

    Anyway, that’s me. If anyone has any hints or tips re mobility scooters or dealing with the speech thing, that would be great but really I just wanted to say hi! 😊 Oh & if anyone knows any positive/inspiring stories I’d love to be pointed in their direction too - those definitely help me the most! Thanks all. Xx

    #2
    Welcome Sarah. My name is Sheila. Sadly I lost my Husband Mick to MND Jul 3rd at 59. I still check in most days to see how everyone is. We bought a scooter for Mick , a gogi go I think its called. He only used it four times, they are very good though . He banked his voice. There is lots of support, its early days . Take care x

    Comment


      #3
      Hi Sarah, welcome. I'm sorry that you've had to join us on this horrid journey. Bad luck that it all happened shortly after your house move and new job. I hope that your new home is either already wheelchair friendly or will be easy to adapt. A wet-room and downstairs bedroom will help in the future.

      It's good that you're doing voice banking. Look for my previous posts and other contributors to this subject. That'd save me repeating myself and it's always good to bring old posts back to the top so that newbies can see them.

      It's a terrible shock for both of you getting your MND diagnosis but it sounds like you are proactive and fighting it.

      Good luck with your scooter search. Have you got a walker already?

      Hugs, 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


        #4
        Thanks Sheila for your message & encouragement. So sorry to hear about your husband. The thought of leaving my wife alone is one of the hardest things to come to terms with. Take care. Xx

        Comment


          #5
          Hi Lynsey. Thanks for your message - I’ll look your previous posts up. As it happens, we’ve built an extension on the house, to take advantage of the lovely view, & included a utility room with a shower - this was actually for the dogs but obviously it’s very useful for me now!! It’s a small house so no room for a wheelchair- not sure what I’ll do if I ever can’t walk at all. They’ve said I can have a stair lift tho. I don’t have a walker - will look those up. Thanks again for your message. X

          Comment


            #6
            Sarah, if you are in the UK your OT or Physio would organise a walker for you through the local adult social care department. 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


              #7
              Originally posted by SarahWP View Post
              Hi Lynsey. Thanks for your message - I’ll look your previous posts up. As it happens, we’ve built an extension on the house, to take advantage of the lovely view, & included a utility room with a shower - this was actually for the dogs but obviously it’s very useful for me now!! It’s a small house so no room for a wheelchair- not sure what I’ll do if I ever can’t walk at all. They’ve said I can have a stair lift tho. I don’t have a walker - will look those up. Thanks again for your message. X
              Hi Sarah and welcome to the forum no-one wants to need.

              I bought a four-wheeled walker when my walking was deteriorating and only managed to use it a couple of times due to my rate of deterioration. I considered a motorised scooter at the same time as the walker but realised that I wouldn't be able to manoeuvre my foot enough to get on it.
              Dina

              Trying to keep positive, but not always managing.

              Comment


                #8
                Hi Sarah and welcome to the forum family.

                Sorry you have been diagnosed with MND but you will find support and advice here. I know the voice banking is laborious but it is worth the effort. Lynne refers to a walker and for safety I recommend a 4 wheel version. Social services may provide one but they tend to be 3 wheel versions. Falling is a big risk so if you google walker look for something lightweight for easy lifting into the car. You can get them weighing around 7kg. I know you are only 50 but remember that famous saying “pride comes before a fall”.

                You mentioned scooters and the choice is endless. Ask yourself what you will use it for. Is it just to go locally to the shops or will you want to be more adventurous and go on accessible walks. Some scooters fold or come apart in sections so they can be lifted into a car. I recommend going to a mobility shop where they won’t try a hard sell and they often have second hand ones and they will maintain it for you. I know from experience that batteries and chargers can fail and tyres get punctures so it is worth having a relationship with a local supplier.

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

                Comment


                  #9
                  Hi Sarah and a warm welcome to you and Sue (and to the 4-legged pets )

                  There is nothing comforting I can say about losing one's speech, I'm afraid. I always say (with experience) that I'd 'happily' live with all my disabilities, but please, just give me back my voice !!!! Anyway, it is what it is, I've just got to adapt & conquer...

                  You said you have a wheelchair atm - is it a manual or power chair? Don't write off your house yet as being too small for a power chair - there are some mini chairs which, maybe with a bit of furniture moving/removing, may surprise you with their agility and small turning circles.

                  As for giving you hope, well I am well into my 13th year living with ALS/MND - am totally dependent on others, but have raised my 2 children with my husband and enjoy my life.

                  Is it how I thought my life would pan out? Absolutely not, but it is what it is and we make the most of it.

                  Is it all plain sailing? Absolutely not. If I can give you advice, keep communicating with Sue, openly and honestly. I did counselling which helped me lots (hubby wouldn't but maybe Sue will?)

                  And stay upright, as in don't fall!! Get the flu shot and the pneumonia PPV23 once-off vaccine.

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

                  Comment


                    #10
                    Thanks all so much for your welcoming & encouraging messages. I will take all your advice on board - thank you. And Ellie - totally agree, take anything but my voice! But as you say, it is what it is. 13 years is amazing- you’ve given me hope, & that’s the only thing I really need right now. Thank you!! xx

                    Comment


                      #11
                      Hi Sarah and welcome to the forum,

                      I am so sorry for your diagnosis and I imagine, after just a month you are still reeling from the shock. It's good you've posted because this is a great place for support and practical advice. You seem to have a positive and proactive approach , and that will really help you too.

                      I found the early days and the contact with the MND team totally overwhelming because there was so much advice but now my physio, nurse and OT are on my favourites contacts ( even if I am not on theres !) They are always there no matter how small the problem so I hope you get this support in place too.

                      Take Care of yourself , Sarah and Sue too.
                      Love Debbie x

                      Comment


                        #12
                        Thanks so much Debbie. You’re absolutely right - all the health visits we e had has been somewhat overwhelming- as welcome as they all are. I’m in Cardiff and will have access to an MND clinic so will receive excellent support, for which I am so grateful.

                        Staying upright is becoming more of an issue as I’m increasingly unsteady on my feet. My OT is coming next week to discuss options with me.

                        Thanks again for your welcome. Xx

                        Comment


                          #13
                          Hello Sarah. Hope you, and Sue, can stay positive, that really is a hugely important thing if you can do it. My pet dogs also help in that regard. My walking and balance are terrible, but, getting towards 8 years now and my hands and arms are good, and no dramatic changes, so there is hope. I use a boot scooter, which we can take out in the car, not too heavy, and does 14 miles on a battery charge.
                          Love Olivia.

                          Comment


                            #14
                            Hi Olivia. Thank you so much for the advice - & for giving me hope! I’m looking into a scooter for the same reason and that sounds perfect. We’re staying as positive as possible, not least as I’m learning that my mental state significantly affects my physical state. Thanks again for the hope. Love, Sarah xx

                            Comment


                              #15
                              I love to hear any positve stories!! I have a little scooter as well, but I am finding the wheelchair a little more comfortable now. I have to stay more positive as I get bad anxiety.
                              Love Sheila x

                              Comment

                              Working...
                              X