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Thread: Changes are afoot.

  1. #11
    Forum Member Lynne K's Avatar
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    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.

  2. #12
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    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.

  3. #13
    Forum Member Gillette's Avatar
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    Quote 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.

  4. #14
    Forum Member Lynne K's Avatar
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    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.

  5. #15
    Forum Member Lynne K's Avatar
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    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; 12th December 2019 at 20:20.
    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.

  6. #16
    Forum Member nunhead_man's Avatar
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    Good morning Lynne

    I understand your want for independence and perhaps you do not understand the importance to me of the detailed description you are giving about your challenge as we face moving house ourselves and I think about how I want the new place organised.

    I do not know how you are placed financially, but I wonder, given that your husband does not seem interested (?) in helping you with "fresh air an optical stimulation", whether you could pay somebody perhaps one day a week to help get you out and about?

    Or perhaps you have a friend or there may be a local volunteer who might be able to help you in this way?
    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"

  7. #17
    Forum Member Lynne K's Avatar
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    Hi all. When my OT came out the other week she saw me walk with my walker and a said for me to continue using it for as long as possible so I have been. But I've fallen twice in the last week and last night was awful.

    I got up from my chair and was walking towards the door with view to going to do my teeth ready for bed. I decided to take off my walker the little blanket that was on it as I passed a chair (aiming to put the blanket on the back of the chair). I stupidly took both hands off from my walker. I fell backwards rather hard. The back of my head bashed onto the floor. I ended up on my back quite a far way from my walker, in which was my mobile phone. Steve had gone to bed about 15 minutes earlier (unusual because I'm usually first to bed and first up). I shouted Steve over and over for about 10 minutes, started to worry whether I'd manage to get up on my own. That was impossible. I had trouble even turning over. So I had to try and get my phone so I could call Steve. After another 10 minutes or so I got to it and called him. He'd been asleep. He helped me up. That was really really hard. I was left exhausted with shaky legs after the enormous effort.

    When I got up this morning i was really nervous. But I'm aware that when I've fallen recently it's been when I've been doing something different or doing two things at once. I must not multi task and keep to routine well practiced things.

    Lynne
    Last edited by Lynne K; 22nd January 2020 at 08:57.
    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.

  8. #18
    Forum Member Barry52's Avatar
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    Hi Lynne,

    I hope you have not sustained any serious injuries and it may be worth checking it out. I know that feeling of panic after a fall. As you mentioned when we do something that distracts us we are then vulnerable to loosing our balance.

    Let us know how you are in a day or so.

    Best wishes,
    Barry x
    Iím going to do this even if it kills me!

  9. #19
    Forum Member Lynne K's Avatar
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    Thanks Barry. I had a sore head last night (2am) but it's perfectly ok now. I'm just exhausted still. But the late night doesn't help much there. I'm usually in bed before midnight. I'd been watching Netflix. 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.

  10. #20
    Forum Member Barry52's Avatar
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    Hi Lynne,

    I had a thought about person to person alert systems which are good for vulnerable people like us. I use a wristband alarm which is managed by Saga. It is linked to my landline so only works if I am in range. Technology has moved on and I see you can get a fall detector which alerts your family/friends. The cost is £99 and then £2 per week for the connection so it is similar to what Saga or Age Concern charge but more versatile.

    Barry x
    Iím going to do this even if it kills me!

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