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This topic contains 9 replies, has 3 voices, and was last updated by  Esther Collington 1 year, 4 months ago.

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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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