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    Changes are afoot.

    I had my 3 month check at the MND clinic in Salford today. My neurologist was happy with me, as always. My breathing tests and bloods were good. But our discussion about how my walking has become has brought up big issues.

    I've fallen a couple of times this week, not badly but it's very difficult to get up. She reminded me of the bad fall that I told her about last time.

    To avoid falling I've been having to lean into my 4 wheeled walker. But it's making my arms sore since all of my weight is on my arms. It's not stopped my falls this week. I decide yesterday to not walk to our car any longer (downhill) as it feels too risky.

    My neurologist and my husband ganged up on me (in a light hearted way) to convince me to use my powered wheelchair all of the time. They both referred to my fierce independance or stubbornness as Steve calls it. But I'm not stupid so have reluctantly agreed with them.

    I have problems with this because my wheelchair won't fit through the gap to our kitchen. The doorway is wide enough but a unit is on the left and our fridge/freezer is on the right, between them making the gap narrower. There's no room to move the fridge/freezer. The kitchen is tiny. But I currently do my own breakfast and lunch. I use the microwave for porridge and make sandwiches lunch time. Steve cooks our evening meal mostly.

    So using the powered wheelchair could take away my independence and I'd be starving hungry waiting for Steve to get up to do my breakfast. I'm usually up a couple of hours before him.

    I refuse to be defeated. So I've ordered a very small microwave that will be placed on our table in our front room. Then if everything is left ready for me I can continue to do my breakfast. I might get Steve to bring me in sandwich making things so I can keep doing that.

    Our bedroom is another challenge. It's super difficult to get my wheelchair in and out. But could work better if some changes were made.

    Good news: My neurologist agreed to put my name forward for a trial starting in January. It's with an existing cancer drug. So if it's successful it could be brought to a treatment stage more quickly than a new invention.

    I'm off to get ready for bed now. Good night all. Lynne
    Last edited by Lynne K; 12 December 2019, 08:16.
    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.

    #2
    Hi Lynne

    Oh what a blow, having to make the decision to use your powered wheelchair in your home. Very well done for actually making that decision, especially with the implications for your independence, and for finding a solution. Your positive outlook is inspiring.

    Fingers crossed that you will be accepted onto the trial - it sounds interesting.
    Dina

    Trying to keep positive, but not always managing.

    Comment


      #3
      Thanks Dina. I'll keep you all informed about the trial when I have more information. My neurologist told me that the lead researcher is based in Edinburgh and they have a very good reputation about running trials. Sounds good.

      You were up late, or early depending on how you look on it Are you not sleeping well? Lynne x
      Last edited by Lynne K; 12 December 2019, 08:30.
      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
        Good morning Lynn

        I am sorry you are having to be press-ganged into more wheelchair use, but on the other hand, I am sure it is safer for you, given what you are describing.

        Also, you describe your house, which sounds quite small ?

        Has moving house not been an option?

        My occupational therapist has been banging on about this for about twelve months.

        Presumably, widening doorways et cetera would be big job?
        Warmly


        Andy

        ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
        MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

        "Things turn out the best for people who make the best of the way things turn out"

        Comment


          #5
          Our bathroom door is very narrow, hubby has a wheeled office chair to get in there. He needs help on and off the chair otherwise it works well.

          Comment


            #6
            Hi Lynne,

            So sorry you are having to consider using your powerchair full time. Every little loss of independence is a major blow isnt it ?

            I stopped using my rollator after one fall too many . My legs would just give way with no warning.Once I had got used to it I found I had more independence because my hands are free to do things ... I just need to make sure things are in reach. My hubby wouldn't leave me in case I fell but now I know I can get around or get out in an emergency.

            We did have to rearrange all the furniture and we had doors re hung ( is that the right word ?) So they opened outwards which gives more room and enables me to open them. The skirting boards get a bashing but that's probably the driver! My chair is a salsa mini which is apparently the narrowest available.

            Good luck with everything, including the trial, which sounds interesting.
            Love Debbie x

            Comment


              #7
              Hi Andy. We moved November 2018 to this 2 bedroomed ground floor adapted flat. Our previous home was bigger and better downstairs but 3 sets of steps/stairs, the main staircase, steps into the bathroom and a step down to the back bedroom (which I used as my office/knitting machine room). Everything is now on one floor which is better. But it's far from perfect. 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


                #8
                Hi Debbie. Thanks for all your information. I don't have a clue how I'll be able to open doors when sitting in my wheelchair.

                My neurologist suggested changing my wheelchair for a narrower one, probably like yours. But I want to use mine on countryside tracks. That's why they gave me this. It's an Invacare Spectra XTR2. I guess that yours would fit through to our kitchen. But I'm desperate to get out in the countryside. I can't have both

                My neurologist told me to contact my OT to discuss all this and so that she can monitor how I'm doing. I haven't rang her yet. She's only in the office 9 to 10 and I was showering then. I might email her. But she, unusually hasn't replied to my previous message, sent about a month ago.

                My hubby has piled loads of stuff onto my wheelchair so I'm waiting on him clearing it.

                It looks like I'll have to get rid of my chest of drawers in our bedroom so that the door can open fully, folding back. This would make it easier to get in that room. I don't know what I'd do with all the things that's in it. It's quite big.
                Lynne. X
                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


                  #9
                  Hi MusicMansWife, is there any chance that your bathroom door can be widened so that his wheelchair fits through? 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


                    #10
                    Hi Lynne,

                    I'm sorry you're having to use your powerchair full-time now - it's a horrible slap in the face for you

                    Yes, it does downgrade your independence but a bad fall could set you back quite a lot and make you even less independent... Safety is so important.

                    I'm glad you're getting a microwave you can use - that's great for maintaining your independence.

                    Sliding doors might be an alternative to standard doors, but obviously this requires work to be done. Also, if you can reverse into a room, that sometimes makes manoeuvring into and out of a room a bit easier.

                    Hope the trial works out for you.

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

                    Comment


                      #11
                      Yes Ellie. I asked my husband a couple of months ago about changing our bathroom door to one that folds. We had one like that on holiday and it was much easier. My husband didn't agree. Also I would have to back in or back out of our bedroom because no space to turn around mLynne x
                      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


                        #12
                        Hello Lynne,
                        I am sorry your walking has worsened such that you are having to use your powered wheelchair in the house. But, as ever, you sound strong and like you say " refuse to be defeated". I understand what you mean by not feeling safe to walk downhill to your car as I have the same situation ( albeit my OT got me into my car this week for the first time in 7 weeks , using a wheelchair to access it ). I understand what you mean by wanting to maintain your independence. But, you are fortunate in having a husband to assist you so is it maybe an idea to consider your independence as a couple sometimes, not just as an individual? ( apologies if I am wrong about that as I have been single all my life and didn't have girlfriends once my rheumatic spinal problems started ).
                        It is interesting that you may be part of a trial. I wish you all the best with that.
                        Take care, PT.

                        Comment


                          #13
                          Originally posted by Lynne K View Post
                          Thanks Dina. I'll keep you all informed about the trial when I have more information. My neurologist told me that the lead researcher is based in Edinburgh and they have a very good reputation about running trials. Sounds good.

                          You were up late, or early depending on how you look on it Are you not sleeping well? Lynne x
                          Hi Lynne,

                          I was chatting to Judith, the manager of the Neuro research team at Salford, when she called round today. They are starting as satellites for two studies. One has just started recruiting and the other should start in March. The one that has begun is using an established cancer drug, the other will use a selection of existing drugs for other conditions to see if they have any effect in MND patients. She said Dr Chaouch is very motivated and keen on doing research. It sounds as though there are exciting times ahead for research at Salford

                          Sleeping ok, thanks, but sometimes awake for a while during the night. Just one of those things. Thanks for asking.
                          Dina

                          Trying to keep positive, but not always managing.

                          Comment


                            #14
                            Thanks for the info Dina. The trial that's recruiting now is called Tudca. To get on it you have to be up to 18mths since diagnosis and do not have any swallowing issues. I can't join that because I'm 25mths since diagnosis. The one that Dr Chaouch is putting me forward for that starts in January is open to all stage patients. This is the one using a treatment used previously with cancer patients. It could be the same research as the one you mentioned that starts in March. They might be recruiting from January, getting patients ready and starting in March. Fingers crossed that either or both of these trials prove helpful. Maybe this horrid disease will be brought under control some time in the future by a cocktail of drugs, like it was for HIV.

                            I'm glad that you don't struggle to sleep every night. 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


                              #15
                              Hi Panniertank and thanks. I am alone for two of three evenings a week when Steve goes to play his fiddle with other musicians. Occasionally it's more than that. I'm on my own each morning for about 2 hours and also whenever he goes out shopping. He seldom asks me to go with him. He seems to find dealing with the wheelchair into and out of the car too time consuming. He tutors a few hours a week too. It feels like I'm alone for more than half my time. I don't mind that at all really. It's that I don't get out enough that frustrates me. But he doesn't seem to grasp that despite me having explained it several times. Or maybe he thinks that I ought just accept it. No way hosay. I don't give in so easy but I only have myself to rely on. He'd nurse me if needed but he's not, I've found, up to helping me get out and about/stimulated as much as I need. So I have to do it myself.

                              I look forward to being able to escape in my powered wheelchair. I'm waiting for two things. First Steve needs to remove the stuff that he's dumped on my wheelchair. Secondly I have to wait until the gas people have filled in all of the holes in our roads and pavements around here.

                              I'm glad that your OT took you out and I hope that you can get out often.

                              I've been home alone since 3pm today. Steve's back after midnight. He went straight to a music session in Settle after tutoring for an hour. I finished the book that I was reading, listened to some radio (Doddy Weir and a Liverpool player who both have MND were on 5live) and did my evening meal (Steve had put a potato ready in the microwave and tuna ready in a bowl in the fridge.).

                              You can probably understand why I'm wanting to stay independent. I don't just need sustenance to survive. I need fresh air and optical stimulation.

                              Love Lynne x
                              Last edited by Lynne K; 12 December 2019, 21:20.
                              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

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