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Time Is Motor Neurons

A father’s perspective: Our journey to finding a treatment

When Quinn, our soon-to-be-born daughter, didn’t make as much movement in the womb as our other 3 children, my wife, Annie, and I thought we had the “chillest” baby in the world. We joked that she was saving up all her energy for when she entered this world kicking and screaming. Quinn was born in August 2018, and she was the most beautiful little girl. Over the first few months, nothing seemed out of the ordinary. In fact, she appeared healthy and had strong upper body strength. But by the time Quinn’s 9-month check-up came around in June, her physical condition started to change.


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This topic has 9 replies, 3 voices, and was last updated 2 years, 2 months ago by Esther Collington.

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    • #11297
      Kevin Schaefer
      Keymaster

      Hey everyone. I had a question related to fatigue.

      So, normally I sleep pretty well, but I can still get pretty tired by late afternoon sometimes. However, it’s hard for me to transfer to my bed during the day, given that it takes me a while to get comfortable and set up in my chair. I can lean back in my chair, but if I do that it’s harder for me to go to sleep.

      I was just wondering what you all do. Do any of you try taking naps during the day? Or do you just stay in your chair during the day and sleep at night? I’m also curious about how many of you use a BiPAP machine or something similar. I wear a BiPAP at night.

    • #11343
      Esther Collington
      Participant

      Hello Kevin

      I have two 1/2 hour rests during the day and have a “board” with mattress on the bath in the bathroom so that I can cut down on hoist transfers by only lying down when I use the toilet (which is next to the bath). This is rather inconvenient for my carers but they make sure they use the facilities before I do! I understand your difficulty of lengthy sessions of getting comfortable back in the wheelchair but I haven’t found a solution yet.

      I have used a Nippy machine at night for over 20 years (I’m 66 years old), and as and when during the day for the last 5 years although I am currently using it much more which is rather worrying.

      • #11346
        Kevin Schaefer
        Keymaster

        Thanks Esther! Great advice.

        That’s interesting about the “board” and mattress you use in the bathroom. I might have to try something similar. I also recently started doing my Vest Airway Clearance System sessions while I’m in the bathroom, which has been helpful. It allows me to knock out these sessions and use the restroom simultaneously, instead of taking away some of my free time during the day to do the vest. This has helped me feel more relaxed.

        Thanks for the input!

    • #11351
      Esther Collington
      Participant

      That’s OK Kevin, glad to be of help.

      What’s a Vest Airway Clearance System please? Not heard of that?

      Esther

    • #11357
      Kelly Miller
      Participant

      Esther, it is a vest that you wear & it vibrates & shakes your chest to loosen the congestion. You can use it when you’re sick and/or you can use it as a regular daily therapy to keep things loose. It works wonders! I’ve used it in place of chest percussion, which makes me sore after a very short time. The vest doesn’t hurt, in fact it can be pretty comfortable. Have you also heard of the “cough assist” machine? That’s a really good one also when you have bad congestion & its loose but you just can’t get it up. I’ve added a link for both below. These are just one link for each – there are many more.

      Vest  Airway Clearance System – https://www.hill-rom.com/usa/Products/Category/Respiratory-Care/The-Vest-105-Home-Care/

      Cough Assist machine – https://medafore.com/

      There are YouTube videos for the Cough Assist & probably also for the vest. Hope this info helps!

      Take care, Kelly

      • #11358
        Kevin Schaefer
        Keymaster

        Thanks Kelly! Yeah Esther both of these devices are extremely helpful for me. I do several sessions a day on both, as recommended by my pulmonologist, and it’s helped me tremendously.

        Please let us know if you have any further questions.

    • #11362
      Esther Collington
      Participant

      Thank you both. I remember now seeing a piece on local TV about a child being given a vest – that’s how rare they are here! I will enquire about it at my next hospital appointment because I’m suffering from the after affects of a virus which has made me cough more. I did try a cough assist in hospital once some years ago but the physio said it didn’t work well with me, maybe time to revisit that.

      For some years, as my breathing has deteriorated, I have noticed that the strong perscription pain killers that I take have helped me breathe better, whether it is because they make my muscles relax I don’t know. I mentioned it to the consultant but he wasn’t keen to discuss it! I’m of the belief that, as long as I don’t over take them which I’m very careful about, whatever helps is a bonus. Have you heard of this before?

      Esther

      • #11365
        Kevin Schaefer
        Keymaster

        I only use pain meds when I’m sick or I have a broken bone, so I can’t speak to this. Probably best to get the opinions of a few different medical professionals.

        But yes I do recommend asking your doctor again about the vest. That’s too bad they’re pretty rare in England, as I find both it and the cough assist to be extremely useful. Hope you’re able to acquire one of each eventually!

    • #11363
      Kelly Miller
      Participant

      I have not heard of this happening before Esther but that doesn’t mean it wouldn’t happen for you. In fact, most of the doctors say that the stronger the pain meds (as in opioids), the worst effect it will have on respiratory systems. I happen to disagree with this because I’m on opioids daily for pain (the highest dosage amount) & it does not affect my respiratory at all. Whenever I’m in the hospital & have pain, I always get Dilaudid (which is very strong) and it never affects my breathing. I think doctors like to put things in a box and don’t want to discuss anything that goes against the parameters of that box. Unfortunately, most of us with SMA constantly  live utside those  boxes!

      Where do you live? I’m guessing the UK but not sure.

    • #11375
      Esther Collington
      Participant

      Sorry for the delay in replying Kelly. Yes, I live in England. We have the wonderful NHS but unfortunately it is on it’s knees through overuse. My consultant is very good but doesn’t agree with me on this subject! I think the painkillers (Co-dydramol) have kept me going breathing wise for a number of years as I always seemed to be able to breathe better during the maximum relief period of the tablet. I’m not sure if my body has finally got too used to them but probably my breathing is just worse, now I’m having to use the machine more.

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