Stuck in ALS Hell

[JohnnyMags]

Well it's been a week and a half since our visit to the ALS Clinic. I haven't posted anything about that visit because I've been so busy trying to organize what we discussed and dealing with non ALS symptoms. What I mean by that is at the clinic the different team members offered to do things but after we got home and the days went by they obviously forgot things they promised. Sending emails to them only makes me feel like I'm being a pest. One example of that would be the doctor saying he would look into the knee surgery then when I sent him an email reminding him he said he'd look into it and get back to me by the beginning of the week (That was this week past). Still no word on that rather important issue.

One ALS thing Marie had was a partial fall last Friday when we tried to go out another road block stopping her from going out now. As for non ALS things is the continued constipation which has her living off Miralax and when she doesn't take it she can't go at all. That's where we are tonight she's in the bathroom every 30 min with no results and that's very uncomfortable for her. Finding something that will work isn't the issue and what she needs is something that will cure this on again off again problem. That contributes the most to her refusal to go out because she's afraid of the bathroom. There are many places with little or no handicap facilities.

Now the cherry on top this past Tuesday she woke up in agony from severe back pain. She couldn't stand, sit, recline or lean without her back killing her. We went to her PCP and got Steroids and Muscle Relaxant. By evening she was no better and I texted our ALS doctor who suggested the ER fearing a kidney stone. We got to the ER 8am and got home 6am. After a CT Scan they said she had a herniated disk. How who knows? They sent her home with Oxy, Ibuprofen & Valium she is getting better but she is still in quite a bit of pain.

This is just unfair, she has no quality of life dealing with these issues and it's just breaking my heart. Sorry this is kind of long but I could write pages just talking about the last 12 days.

 

[lgelb]

You can write any length here on anything, Johnny. Some clinics use a white board during the appointments to document their promises. Maybe you could hand them your own list, or email it after. You shouldn't have to, but...

I'm sorry to hear about the fall and herniated disk. It sounds acute, so maybe the fall aggravated an existing issue?

Re going out when she hopefully is in less pain -- since it's not necessary to go every day, maybe she could skip a Miralax day or two?

I wish I had better answers for you.

 

[Nikki J]

I am so sorry. While she is taking narcotics I would not try anything new with miralax. After you might try a very slow wean. I know a pals who went from daily full dose to occasional very small partial dose but it took a couple of months. They started with alternating full dose with half a dose for a couple of weeks then half a dose for a couple of weeks then a third of a dose the alternated that. It may not work for her but it will be much more likely than cold turkey. Old fashioned as it may be prune juice or lemon mixed with hot water can help.

The problem with osmotic laxatives like miralax is they can be dehydrating while resulting in unpredictable movements as well as cramps and gas.

 

[drewidia]

So I’m newly diagnosed full ALS (ftd-als now), and been getting up the guts to post … but saw this and wanted to say: sorry to hear what ya’ll are going through but I’ve been through the disc thing and I quickly got off the opioids and instead I went to see a pain doc (mine was an anesthesiologists) and in my case they did a medial branch block for mine - it only affected the sensory part and was a godsend

Most insurance cover it too

Btw Fully agree with the last response too from Nikki

 

[Nikki J]

Hi drewidia
Welcome
Sorry for your dual diagnosis. My mother had both. It is very hard. Please feel free to start your own thread so we can get to know you better. We are friendly I promise

 

[JohnnyMags]

Things have really gotten bad since I first wrote this post. Marie hasn't gone #2 since Monday. She took a day or two off the miralax due to her back and now she just can't go even with the miralax. Her back pain which I thought was getting better seems to be just as bad as original.

Now last night as she walked to her stairlift for bed she felt more unstable so I was walking with her when I felt her going down I held her and kept her from falling but I couldn't hold her and she sank to the floor. We tried a few ways but I couldn't get her up. We had to call 911 to get assistance lifting her. Once we got her up she went up via stairlift and she walked to the bed with the walker.

Today she got up by herself and came downstairs without assistance. She has also been in and out of bathroom via walker without walking issues. I am hoping her inability last night was the result of the Valium & Oxy. At our clinic visit they evaluated her leg strength as the same as 3 months ago ... we know that's not accurate but it did indicate there is strength there.

Today she's afraid to take the Oxy or Valium but that increases her pain level. She finally took Oxy at 4:00 and she's sleeping now. Marie doesn't follow doctor's advice like eating fruits especially prunes for the constipation. I suggest we go outside and sit for awhile to get fresh air but she won't do it.

I also bought a small machine called an elliptical machine but this one does the actual work for you. It basically replicates the motion of riding as bike and it just gets her legs and feet moving. I thought using that to provide some sort of exercise would help her system but you guessed it ... It's not being used. I also bought her a foot massage machine but it is not being used either. I don't think she has given up she just wants relief. She seems to be waiting for all these pain producing issues to go away but she isn't doing all she can.

Oh yeah she isn't using the Bipap ... yesterday I got her to wear it for 3 hours but today I forgot to remind her and she doesn't usually do it on her own.

As for responses not being of much help I don't care it's nice just hearing from people who can relate to all we are going through ... thanks to all.

 

[Nikki J]

Oxycodone and valium are a powerful combination. Combined with distraction from pain and fatigue at the end of the day I can see how she had an atypical for her fall. Still a warning to watch out

You can’t make your pals do anything. I know how frustrating it is when you can see so clearly how xyz would help and she won’t do any of it. My sister did several things I disagreed with though the only egregious one was delaying ( not refusing which is a personal choice) a feeding tube.

You can try to pick your battles. Perhaps you can get her to prioritize what matters to her. Guessing back pain and constipation

The idea of a pain consult is a good one if you can get it urgently. Do you have a main contact at Temple? At my clinic it is my primary RN and I would call your person tomorrow and see if they can pull strings.

The constipation is an issue for her pcp Call them too.

 

[lgelb]

I'm sorry to hear this, Johnny. Is she also on something like ibuprofen (to reduce inflammation) and maybe cyclobenzaprine (muscle relaxant)? Research suggests that targeting the spasm/inflammation may do more than trying to deaden the pain receptors. For that reason, therapeutic massage (you can have someone come to the house) might also help. And a low-voltage heating pad that she sits up against.

Nikki and others are of course on point about narcotics and constipation/falls. I should have differentiated the suggestion for adjusting the Miralax for when she is actually back to going out.

Our go-to's for constipation included salsa, hot coffee/tea, and spinach. And, of course, hydration overall.

 

[JohnnyMags]

Our PCP told us last week if things hadn't improved by Monday to call her and that's what we intend to do tomorrow (Mon). Our doctor from Temple called me tonight and when I told him she hadn't gone #2 since Monday he was rather adamant about us calling our PCP tomorrow(Mon). We also have an apt on Tuesday with her G.I. doctor. Our doctor at Temple believes a lot of her back pain is coming from the constipation (I hope he's right). I went to two drug stores but both Pharmacies were closed so I couldn't get a recommendation. I just bought what I thought would make her go but at home nothing is working.

On a sidebar last night after Marie went to the floor she said all the pain is in her knees. I reminded the doctor today when we spoke about her knees and he said he found someone for us and he is going to send me his contact info on Tuesday (again waiting).

 

[rmt]

Johnny, I too tried really hard to get my husband to try things to improve his quality of life. He didn't make much of an effort to try things and it was very frustrating to me. It was heart breaking to watch him fade away and I couldn't understand why he was being so stubborn. Looking back, I realize that his FTD was part of the reason for his apathy (that's not quite the right word, but it is close). The FTD changed his personality so much. I thought it was depression or denial, and I'm sure there was some of those, but I think a lot was his FTD. Has your wife been evaluated for FTD? If her behavior and affect is very different than before, it is something to keep an eye on.

Regardless of the reason, try to give yourself some grace about feeling frustrated and realize you can't solve all the problems (I still feel like I couldn't solve any of the problems). Everything about ALS is frustrating. It sucks. You and your wife are doing the best you can in a really crappy situation. You won't always agree on things to try, and that is normal. It is OK for you to suggest things, and it is OK for her to decide what to try. Keep being there for her. Some things may improve, but others may not. I wish I could tell you everything will be OK, but I'm sure you realize by now, this is a awful train to be on.

I'm sorry I don't have better suggestions for the issues you dealing with.

 

[Lori7]

Hi. Years ago I had a herniated disc, and it took a lot of physio to get better. If your clinic will not give your wife physio, you should hire a physio to come in and work with your wife occasionally. He/she will give her exercises she can do in bed or safely out of bed. I have a physio come in occasionally, as much as we can afford, and it’s great. Not only will the exercises help her with bowel movements, but the physio can assess what is safe for her to do in terms of walking and other activities and can tell whether she’s too wobbly from the narcotics and Valium and shouldn’t walk around unassisted. The exercises also help with sleep, and they will give her exercises that help her back.

More fibre would help with the bowel, but I found that all the fibre I was eating was causing weight gain, which made it more difficult for people to assist me with moving around. I went off most of the fibre, and was taking lax-a-day daily, alternating occasionally with senokot, and tried to wean down to a half dose of lax-a-day daily. Big mistake, had a bowel “crisis”, very painful muscle spasms in my bowel and severe anal pain. Had to get a doctor in twice, who gave me lactulose and a glycerin suppository daily, and I passed painful rocks for at least two weeks. I think that a full dose of gentle laxative daily might just be a fact of life for ALS patients, although I am not a doctor.

Have an orange daily and a cup of coffee as well. Don’t be a hero and try to wean off the daily miralax. The PCP might have to put your wife on two laxatives for a week or so to fix the problem. Yes, laxatives can dehydrate you and screw up your electrolytes, but don’t be afraid to take them. Some people take a ton of laxatives every day to lose weight. And drink lots of water. Also, expect withdrawal symptoms when she goes off the narcotic. I had to go off them after a surgery, and couldn’t sleep. They also make some people vomit.

Valium is good. You’re lucky to get it. They took me mostly off a heavy dose of clonazepam (a benzo) and no doctor will give me any, except a tiny dose. We need those drugs. We are dying, and we are scared. Finally, I am a fan of diapers. She can put one on as a precaution and go out without worrying about the whole bathroom issue. Tell her it’s no trouble to change it, and she can still use the bathroom if she feels more comfortable with it. The diaper is just to lessen the worry. Going outside is good for your mood, but I can understand if she doesn’t want to go outside. I don’t go outside as often as I should, because it is a lot of trouble for my husband. Tell her it’s no trouble. Maybe that will help.

Sorry about the long post. Hope it helps.

 

[lgelb]

Just as a point of information for others, not all PALS need daily laxatives (or any), nor benzodiazepines such as Valium. The same is true for diapers. Everyone has their own priorities and contexts. Each of these tactics has issues of their own that have to be traded off. One of the reasons sticking with real food whether by mouth or tube is recommended is to give the GI tract as much normal stimulation and variety as possible.

Lori, I can't pretend to know what it feels like to have ALS, but to the extent that you see yourself as dying, scared, and a burden to take out, the world can become very small. I hope you suggest getting out as often this summer as you want to go, and keep looking for ways to widen your world even inside your walls, whether via a bird feeder at your window, a visitor, an item on your mutual to-do list, or the physical/performative world that is available via YouTube.

There may be a shelf life on your days ahead, but it's not one you know and it doesn't have to have the power to suck the life out of those days.

 

[KimT]

I'm going to write about my personal experience. It may or not be appropriate for others.

I have different sources of pain, including herniations in c-spine and Ehlers-Danlos (where my jaw and shoulders dislocate.). I've been in and out of pain since 2016, mostly in pain. I have an Rx for both Valium and Oxy. I rarely need the Oxy as I've become used to pain, even severe pain. I use the Valium daily (all of my doctors concur that I should keep using it because it relaxes my muscles and significantly reduces the pain.). Word of caution: Both Valium and Oxy affect breathing. Your breathing becomes more shallow, not great for ALS or many other health issues. So far, my sats remain good and I wake without headaches.

I've also been constipated and had to come up with the following solution: 1. Lots and lots of water every day, 2. Stool softener every day, 3. Glycerine liquid suppositories (they are like mini enemas and I go within a few minutes after using one, 3. High fiber diet. I found a soft "cookie" called Healthy vegan bites. Two cookies (they are very small) have 10 grams of fiber. I mix four cookies in my Greek Yogurt every morning. I love fruit so I also get fiber from that throughout the day. My fiber intake is around 40 grams a day, sometimes more. I do this consistently but the Glycerine suppositories were a game changer for me. I also take quite a lot of magnesium, so that helps as well.

My constipation was so bad I got a fissure. I pooped blood for three days before my gastro could see me. I knew exactly what it was and he went in and stopped the bleeding. The bidet healed it very well and that's when I found out about the liquid glycerine suppositories.

I'm so sorry you're both going through all this. Oxy, at low doses, doesn't constipate me but if the dose is more than 10mg per day, it no doubt would. There was a time when I fell and had to take it for my hip. I could tell the higher dose made the constipation worse, so I just used one suppository a day. My gastro said I could use one every day. I'll never be without them.

 

[Susan12]

I'm a pediatric gastroenterologist. A couple thoughts.
1. Fiber is a double edged sword. It can soften stools by keeping water in the gut and bulking up the stools. However if there is slow transit (ie narcotics slow motility) or not enough fluid the stools become harder and more difficult to pass.
2. Miralax, Milk of Magnesia, etc work by keeping water in the gi tract. They don't bulk up the stools.
3. The use of a stimulant such as dulcolax or ex-lax can be used as needed.
4. As Kim mentioned glycerin suppositories can be helpful. Fleets enemas can also provide a lot of relief to remove
the rectal impaction.

 

[Clearwater AL]

I deal with constipation too. I take 2 Docusate 50 mg as needed. I also found
a mineral oil enema when it seems to be there but… I know your situation
is very complicated. Don’t know if this is any help. Dealing with this along
with ALS.

I was in the ICU Neuro unit for 5 days three months ago for an unbearable headache,
they put two shots in the back of my head, when they say “this may
be a little uncomfortable” it means you’ll remember it for a long time.

I went to the ALS clinic this past June 4th, the severe headaches are back. My Neuro
feels this is ALS related so he has ordered a special brain MRI, said I would need a driver
to go home. Wonder what that means. Said they will insert a shot into my spinal cord.

Didn’t mean to get off your subject… it’s the many unusual things that go
along with ALS.

I hope your wife finds some relief and some degree of comfort.