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Oct 5, 2018
I can no longer stand and got a hospital bed a week ago. Don’t have the hoyer lift yet. It has been several days since I have had a bowel movement. Have asked for palliative care and should be approved. In power wheelchair 24/7. Suggestions please.
Coffee and salsa if it is a constipation issue.

Or is it that with your CALS/there is no one to lift you? A neighbor? Can your CALS put a bedpan under you? Why are you in the PWC 24/7 instead of the bed?

If there is a hospital-run urgent care near you, I'd try that over an ER. Call first.
You had a previous thread about diarrhea following Miralax. I’m guessing you went off the Miralax and are now constipated. I would try going back on the Miralax along with having someone give you an enema. Also increase your water intake.

If the above doesn’t make you go, the sometimes it is appropriate to go to the ER because you may be impacted. Most impactions can be relieved at home, but the more severe ones can be quite serious and painful. My experience (as a doc) has been that these are best handled in the ER.

I think Laurie’s questions should also be addressed.

My other concern for you is that you need to be on a good bowel program and have folks that can help you where you are so you don’t need to keep using this forum as your primary care provider. Hopefully palliative care and a neurologist or primary care physician can get things straightened out.
My CAL is too small to lift me. Guess two people may be able to hold me up long enough to get a bedpan under me. I have no way to get from the wheelchair to the bed and back again. I can no longer stand and arms are becoming useless.

I am hoping Pallative Care will be able to assist in planning. Just started on Home Healthcare and hope they can assist. I am going the route you suggested, but getting assistance is not always a fast process. I was diagnosed in September and can no longer stand or use left arm and right arm will be gone soon. I no longer have a way to get placed on a commode.

I am not using the forum as a primary care tool. I have just found a PCP that will make house calls and have just changed to a closer ALS clinic. Getting around locally requires scheduling a handicapped bus pickup and going out of town requires us to rent a wheelchair van which we did to go to the new clinic. I thought the forum would be a good source of interim information, but it does seem at times to get jammed up with DIHALS questions, which is ok with me as long as PALS don’t get pushed out.

Darrell Dugan
It sounds like your true issue is the immobility. If you are chairbound with not even a bedpan option do you really want to take something to make you go? What happens then?

Tomorrow morning you / Mrs D need to call whoever is managing your care. I think you moved so not sure if it is still the clinic. Anyway you need an urgent home eval/ visit to get you a lift so you can be moved safely. If you must be in one place the hospital bed is better with the possibility of being turned and positioned on a bedpan as well as other advantages

Palliative care should give you someone to consult and help problem solve. It needs to happen quickly as you clearly need help. A word of caution. I suspect the palliative care rule is the same as hospice. If you have the VNA and want to switch you can not be seen on the same day by both. So if you have neither try to get palliative care. My experience is that once the referral comes to them from the doctor they come quickly
I see we cross posted. If home care is vna call them stress this is urgent
The easiest way to slip a bedpan under you while seated is to lean you forward from the front/lift if/as possible, wrapping their arms around your trunk (person #1) and the person in back manipulate the bedpan. If your wheelchair has anterior tilt where the front of the seat can go lower than the back, that is a big help.

Keep hydrated, no matter what -- reduces the chances of impaction. But a general note that not every PALS needs to go every day. For my husband, it was usually a couple of times a week.

For sure, Darrell, we are always here to help P/CALS. Keep posting whatever/whenever you need support. I'm glad you're gradually finding the resources you need there, and that a Hoyer is in sight!

Your point is well taken. Thanks for the clarification. I’m glad you are seeking help. Sometimes it’s hard on a weekend or if you can’t get ahold of your pcp.

Home health can be invaluable when it comes to things like bowel regulation.

Please feel free to keep posting your concerns here as well. We’ll try to help.
I hope you can get the support you need asap. In the mean time is there a friend/neighbor/family/etc that could help your CALS with lifting you to commode or getting bedpan under you?
Not having a hoyer lift is really affecting your life! I am horrified that you stuck in a PWC 24/7! Not being able to have a good nights sleep or even being able to go the bathroom. Can someone start making calls first thing tomorrow to any and all organizations in your area that have loaner closets that might have a hoyer to lend you? The ALS Assoc, MND Assoc, senior services, and any other local group the helps people. Kate
No medical knowledge here.

However as a caregiver I had days when I wanted to pull my hair out. This sounds worse. Wishing you all the best and quick solutions that let you feel better.

When my pALS broke his arm he was in his wheelchair pretty much 24/7 too and going to the bathroom was very difficult. He has a system of wheelchair, walker, grab bars to transition. He also had his lift chair elevated w. a wooden base and for now it still works for him to get in and out but it's not easy. We got a fully electric hoyer lift from the regional ALS society as well as a hospital bed. Also, the Gleason Foundation gave us a really good shower/bathtub transfer system. Both foundations are great.

It is very hard to get everything lined up quickly enough when ALS progresses so fast. Initially all the equipment seemed not necessary (yet). I did not want to go ahead and get it all lined up and also waited until my partner was ready. For some things I did not even know what we needed and what is out there and what kind of questions to ask. - Like a 'headrest' - we are working to get one. We are in a good place now, looking at the equipment that we need. It was a lot of work, follow up calls, wait time etc.
This is awful. I am so sorry that you're stuck without a lift. I do think it's worth a visit to the ER, and refusing to go home until there's a plan in place to safely move you. The last time Dad was in the hospital, we said we can't take him home until we have a way to suction him.

Have you requested a lift from the loaner closet?
After 2 days of trying finally got a doctor to say we should try Milk of Magnesia. 5 hours later this resolved the issue.
Glad the issue is solved and you have an insight as to what to do if it happens again.
What a relief! ( pun intended)
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