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    • #22676
      WendyD
      Participant

      My husband has slow progressing ALS. He has trouble with sleeping due to various problems: sinus inflammation and weakening diaphragm.  My question is, what kind of bed is best? I found some that will even turn the patient from side to side to avoid bed sores but they are very expensive.  Any ideas?

    • #22677
      Bill
      Participant

      I will be interested in the discussion myself as I’m at same place for deciding on bed. Does your husband use a NIV at night? Can he get in and out  himself ?

      • #22695
        WendyD
        Participant

        Bill,

        Yes my husband has NIV at night and, yes he can still get in and out himself.

    • #22682
      Bill Corrigan
      Participant

      Sleeping is the toughest aspect of this for me. My legs are very weak. The weakness has  slowly but steadily progressed. I can use a walker but it’s tough. At night, everything below my hips is dead weight. I turn myself by grabbing the bed board and strong arm myself. My legs get cramps every time I move at night. I tried Baclophen and it didn’t work. Now I’m trying Tizanidine, and the jury’s out on it, I’ll try it another week I guess.
      I don’t have any breathing or drool issues yet.

      So yes, what beds do people get? And do my wife and I get twin beds?

    • #22681
      John S Pruett
      Participant

      We bought a Nectar Copper mattress for Julie. It was $1800 yet so worth it. If it seems like a lot, ask friends for help. It’s worth every penny. It was flexible to allow the bed to bend with the motorized platform for raising and lowering the bed.

      Please don’t scrimp on a bed. An individual who is in a bed for as many hours as some with ALS needs the very best.

      It helped up to avoid bedsores which we got with the hospital’s bed.

      You can set up a go fund me or pray and ask God to provide the very bed He wants ♥

      Here’s a link, https://www.nectarsleep.com/premier-copper-mattress

      • #22712
        MaryConnolly
        Participant

        John-You mentioned the mattress is “flexible to allow the bed to bend with the motorized platform.” Did you put this mattress on a hospital style bed (like a Rom Hil hospital bed frame) or did you purchase the Nectar adjustable base? And what size did you get for Julie? We currently have a King on an adjustable base and my husband is not having any breathing issues so he can sleep flat. I’m trying to look a bit down the ALS road and prepare. Thanks! —Mary

    • #22686
      Mary Kate Smith
      Participant

      I use a hospital bed. I can raise and lower it at the top and also at my knees. Electric so no need to do it yourself. I also have a slow ALS. Can’t speak or eat, have a feeding tube but other than that I good.

    • #22687
      Mary Kate Smith
      Participant

      <p style=”text-align: left;”>I use a hospital bed. I can raise and lower it at the top and also at my knees. Electric so no need to do it yourself. I also have a slow ALS. Can’t speak or eat, have a feeding tube but other than that I good.</p>

    • #22693
      Eric Kentor
      Participant

      We purchased an electric adjustable king bed with a split mattress that allows me to sleep fairly upright while my wife can continue to sleep on a flat half of the bed.  I am still able to use the remote to adjust the angle of the bed, and the system seems to work well for us.  Good luck!

    • #22694
      Len Jax
      Participant

      Hi Wendy, Bill, and Bill,

      I have a slower progressing PLS, can only walk a short distance, can no longer speak, and am in a PWC most of the time. I could no longer get in bed or turn side to side. Wanting to be planful about the disease progression, I asked my ALS contact person if she knew of any available ICU beds. Luckily she knew of a gentleman whose son had died and wanted to give it away; we just had to move it. After trying to move it ourselves, we ended up hiring professional movers to do it.

      It is Hill Rom TotalCare SpO2RT 2 ICU Bed. It has an air chamber mattress that constantly varies the pressure throughout to avoid pressure points. If one becomes bedridden, you can also program it to rotate the person up to 30 degrees right and left to prevent bedsores. It also has a percussive feature that pounds your back to clear the lungs if congested, and it goes into a sitting position from the end or lowers way down to assist in getting in and out. They are also available reconditioned on line.

      I do not need all of these features at present but may need them in the future. Time will tell. It does make some compressor noises when in it to keep the air flowing to the mattress and motor noise when it rotates you. It is very comfortable, and the previous owner said his son never had bedsores.

      That said, I do have a lift chair that I currently sleep in because I am a night owl, and I can get in and out of it myself. My wife goes to bed earlier and would have to help me get into bed with the Hill Rom.

      Another advantage of the lift chair is I have Lymphedema in my legs and was spending three hours a day getting compression treatments to reduce fluid retention. Since sleeping in the chair at night, I have lost 3 inches of circumference in both legs and have discontinued the compression treatments. I used to wear thigh high compression hose and I no longer wear those either. A much better quality of life for me and much less work for my wife/caregiver.

      It is a Golden Model PR515 and allows you to have your feet above your heart so fluid is reduced naturally. I tilt my head up just a bit, it is very comfortable and have adapted very well to sleeping in it, I used to sleep on my stomach and side turning several times during the night. There are videos of how they work on the Golden site as there are of the bed on the Hill Rom site.

      The chairs are quite pricy, but a good nights sleep is essential. We have it in the living room, so it is for watching TV also. One does have to adjust to not sleeping in the same room or bed with your significant other. It is so strange at first but does get better.

      We do have Medical Marijuana here in Missouri and I take it every night to sleep. I use gummies that have 10mg of THC, or 1 ml of a tincture of THC under the tongue and sleep like a baby. It is not enough to make me High but I do dream most nights.

      Sorry this is long but information is good for all of us. Hope it helps!

      Len

      • #22696
        WendyD
        Participant

        Len

        Your response was very informative.  I have looked at the Hill Rom bed and was wondering if it would be worth the money. The other I was looking at is a pro bed by freedom beds. They cost $40,000. Not exactly in the budget.  My husband also sleeps many nights in his power chair but wishes he could roll over. Yes, tinctures are very helpful for sleeping as  as well as cramping.

        I’m curious how the caregivers feel about the bed options in regards to tending to the needs of the Pals.

    • #22705
      Esmeralda Trinidad
      Participant

      I have decided to sleep in a power recliner and it has been working for me because I can’t purchase the bed that’s way out of my budget

    • #22713
      Debbie Zolnierowicz
      Participant

      My husband also has slow progression lower limb-onset.  Onset 2018, diagnosis 2020, and he is now using a walker.  He can still get in and out of bed on his own, but only because of our bed.

      We have a fully adjustable king-size bed, ours is from Serta. We’ve had the bed for over 15 years – the platform really does last that long!  The platforms are actually twin XL and we’d used them synced to raise and lower as one.  When we needed a new mattress this year, we decided to disconnect the platforms and get a “split king” (which is really just 2 twin XL mattresses).  We had the flexibility then to get different types of mattresses, but we ended up choosing the same.  We did switch to tempurpedic proadapt, primarily because of the supportive edge that is critical for getting in and out safely.

      It has a zero-g setting, which places the feet slightly above a slightly elevated head.  Then you can adjust it from there, including adding lumbar adjustment.  He sleeps in modified zero g all night now, and this has really helped with back/leg pain and breathing (he uses NIV, but has been a CPAP user for 15 years).

      As his spouse, I do miss being able to snuggle.  But the dog is usually there anyway lol.  As his caregiver, I’m relieved that he can get a great night of sleep every night.  Getting in bed is slow but doable, but getting out is where this bed is so helpful.  The head section moves up to a sitting position, and it’s much easier for him to move his legs off the edge & stand up using his walker.

      When we went on our annual family trip this year, we were both anxious about being without his bed – both in terms of getting out, and his sleep position.  We bought a few items that were not terribly expensive, but they made a world of difference and still have some use at home.

      Contour Backmax Plus – foam cushion system that allowed him to sleep in zero g position.

      Stander Stand Up Couch Cane.  This is a bed table on steroids.  It gave him enough leverage to push up, and I locked arms with him to support the upward motion.  It also provided greater stability when he was getting into bed and adjusting.

      Stander Bed Caddie 2085 – this is actually a “bed ladder” which we attached to the foot of the bed and provided a sturdy handle for my husband to pull/stabilize.  We didn’t use this so much, because locking arms and pushing off on the couch cane were sufficient.

      SitNStand Portable Lift Chair – we didn’t actually purchase this for the bed, but rather to convert recliners to a lift chair and to aid in rising from the dining chair, bedroom chair, lawn chair, etc.   But we discovered that with a little maneuvering, he could sit on it on the bed & use it to raise him forward slowly to standing.  Seriously the best $500 we’ve spent related to his ALS.  We use it every day at dinner table and a few times a week on the back deck.

      I hope this post is of some help!

    • #22716
      Kathleen B (Katie)
      Participant

      Thank you so much Debbie Z! Very helpful post for things AND their usefulness & how to ideas!  The mention of cost & ‘worth-it-ness’ is also very good info—this ALS happens to be the way we are spending our retirement dollars…but, just like we’ve done through our married life (38yrs so far), we are very conscious of cost-benefit ratio on all purchases. Good to know some items help in travel—we have not gone farther than a few hours so far—but we would like to go across or out of state to see friends and family.   Your note gave us the idea it IS possible! TY!

      • #22720
        WendyD
        Participant

        Thank you guys for such awesome responses! My husband has and adjustable bed too but it creates an uncomfortable “rolled” fold in the mattress when in a reclined position with no support for the lower back.  It sounds like this is related to the bed he has and may be different with a different bed. Maybe worth a shopping day out!

    • #22721
      MaryConnolly
      Participant

      OMG-this is all so timely! The SitnStand Portable Lift Chair sounds perfect for getting out to see friends without getting swallowed in their sofa. And from the video on the website we learned that it can raise a person up to a height of 8″, which is a lot! Now to check our adjustable bed to see if we can “uncouple” the 2 platforms. I just wish that Medicare would cover this stuff–if the goal is quality of life then being able to get up from a chair or out of bed or off a toilet safely, without injuring yourself or a caregiver, is CRITICAL. Thanks to the team on such great advice!

    • #22723
      Kathleen B (Katie)
      Participant

      I’m right there with you on the Medicare decision thing—they have a committee making decisions that is NOT medical persons from ANY discipline—and, obviously NO connection at all with anyone who has ALS?! It IS a broken system for sure.  Thank goodness for ALS State & National organizations & support groups help! (i.e. Team Gleason for instance).

      • #22726
        MaryConnolly
        Participant

        Agreed and preaching to the choir. All the more reason to stay involved on the advocacy front. Surely we caregivers have plenty to do and we know our pALS do as well. Do what you can, share what you know and keep writing your reps! Best to you all! Take good care.

      • #22724
        Debbie Zolnierowicz
        Participant

        Medicare does not cover “convenience items”, even though they support ADLs (activities of daily living).  For instance, a transport chair and scooters are only covered if it’s primarily to be used in the home for ADLs, yet most of us think of their benefit OUTSIDE the home to maintain quality of life and to seek medical care.  To be fair, Medicare covers what they are statutorily obligated to cover.  The laws for coverage are slow to change…remember that dental isn’t even covered, and most  drugs are only covered with optional Part D plans.  Many private insurance companies don’t cover these things either, but if you have an FSA or HSA through your employer, these are reimbursable items.  Surprisingly, Medicaid plans cover more of these items because their covered members are some of the most medically fragile in the community.  It’s absurd that in a country with our resources, the US still has such an archaic vision of what constitutes medical need. But I digress…

        But you are right Katie to bring up the foundations and associations!  We work with Les Turner, and the DME available through their loan closets is great.  We’ve even tried out a few versions of power chairs (not permanent chairs, these are not custom at all).  When my husband can’t use the SitNStand any longer, I will donate it to them so another family can benefit.

    • #22741
      Nina
      Participant

      Thanks everyone for all this valuable information. I am paralyzed from the waist down and have a hospital bed that allows me to raise my head and my legs.  But I sleep all night on my back . No bedsores so far but my OT is worried. He thinks I need to be rolled from side to side at night but I wondered if Len’s bed is another solution. Len, does the rotation therapy promised by the Hill Com Sport bed really work? Will it allow enough turning at night to keep my backside off the bed? Thanks all of you for contributing to this valuable thread.

      • #22747
        Len Jax
        Participant

        Hi Nina,

        As I said in my post, I have not used the bed much; I am a night owl and sleep in my lift chair for now. My wife goes to bed early and has to assist me into bed, but I get in the chair unassisted.

        The gentleman I got the bed from related that his son was in bed most of the time for several years and never had bedsores. I think they are one of the beds that hospitals use in their ICU units – at least, I saw several on the news during Covid.

        The beds have a feature called Opti-Rest that very slowly varies the pressure in different parts of the mattress to prevent the pressure points that cause bedsores. This wave of air circulation also prevents sweating to keep the skin dry, as I understand it. I used the rotation feature a few times, and it felt good. I liked the 30% left and right rotation. It does go much further than that, but I found that uncomfortable. You can set the duration of time for left, right, and on your back. It goes slowly, but you have the compressor and motor noise; I found I didn’t have an issue with that after a bit – Just background noise.

        For caregivers, it has many features to make their tasks easier.

        • Boost fills the mattress with air and tilts your head down, so  pals slide up in the bed to reposition
        • Max inflate makes it easier to get a sling or transfer board under the pals
        • Turn Assist helps with changing sheets, slings, etc

        I have included a link to a video from a company that sells reconditioned beds of this bed. I chose this one because it reviews most of the features. Many companies sell these, and I can’t comment on any of them. I would question them on what their definition of “Reconditioning” is.

        https://www.youtube.com/watch?v=pzzLCJFnpJM

        Hopefully, this helps you, Nina. Everyone has their quirks with sleeping, and a good night’s sleep is so important! Good luck!

        Len

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