CALS Roll Call Continued

[Marieb425]

I don’t always reply but have been reading and thinking of everyone. It’s good to know about the power; we live in an area where power can go out for days (due to trees) and I was thinking we could need a generator for next winter.

I have a somewhat unrelated question. The feeding tube (Mickey type) was brought up by my husband’s neurologist and also the nutritionist/speech therapist at his last ALS clinic. I suspected this was coming because he has significant tongue weakness, has choked on water, and it takes him a long time to eat.

He’s not very open to it right now so I’m giving him some space. However my question, his neurologist said he would spend the night in the hospital after the procedure. This could be because we live in an area where if a major health situation occurs they medivac you to seattle in a helicopter (we live on an island). Is that why the doctor would suggest it? He’s young and all his respiratory tests are good (FVC when sitting up was 89%). I’m a little scared after reading some recent threads and I know he’ll be upset if he’s in significant pain for something he doesn’t want.

Thanks,

Marie

 

[affected]

I know that here in Australia they kept Chris overnight, made sure all settled and that I was confident with using and cleaning it before we went home.

Some PALS have pain some don't.

All I can say is - the earlier he gets it done, the less problems he is likely to have. If he is having trouble now and starts to lose weight and dehydrate it is not going to make the procedure better. My Chris was very dehydrated. I nearly cried with relief when we arrived that morning and the doctor took one look at Chris, turned to me and said, would you like a drip put in now? YES please!
Maybe it made a difference to how well it all went and his healing being dehydrated and half emaciated.

 

[Mary2]

Our neurologist is having PALS taper off Lexapro before he starts Neudexta. Apparently there is some type of possible interaction. The Lexapro has been good for PALS. I am a little worried about him coming off it.

 

[lgelb]

Nuedexta + an SSRI makes serotonin syndrome (SS), more accurately serotonin toxicity, (ST) more likely, so that is why they want to taper the Lexapro, Mary. Still, overt ST is rare -- maybe 2 cases out of 10,000 patient years with a two-drug combo like this one in some studies -- so if you wanted to reduce the Lexapro instead of stop it, that is worth broaching. This presumes he's not on any other possibly ST-causing drugs.

Marie, I believe your guess is correct. Also, not knowing which island you are on, and whether he gets a tube or not, if your ferry is sometimes crowded enough that you might have to wait for the next run, you can get a WSF medical form faxed to the to/from terminals so you can always get on the first ferry out. You can get one good for 90 days at a time.

I would definitely get him off plain water. It's often the hardest liquid to swallow. Same for skins, kernels, raw produce, etc. Dairy or non-dairy smoothies [eggs, nut butters, olive oil, canned fruits, puréed meats, applesauce, yogurt, ice cream, are ingredient examples -- find more in search) via large bore straw or spoon can be your friend. Warm may be better than cold.

I'm glad you're giving him the space to make his free choice. Not every intervention is right for everyone. There are videos on YouTube and other sites if he wants to see more of what is entailed.

 

[Tomswife]

Tom is on Nudexta and PCP just ordered Lexapro, at our request.
I dont want to second guess the Dr. but should we be concerned?

 

[MJT]

Marie- my PALS opted not to get a feeding tube. I can't imagine being on an island and navigating ALS. Kim T said, "someone always has it worse than you." So true.

Tomswife- I am hopeful that once Tom can expel CO2 his personality might return. We had a bad experience that, in hindsight, was most likely due to being too long off the vent. I agree with Mary that deciphering the cleaning/replacement schedule is grueling. It becomes overwhelming if you are tired (ha!) or interrupted (ha ha!). Wait until you are more rested and have had a high-protein meal, plan a reward for yourself afterward, and spend time setting up a calendar that works best for you, whether on paper or google, etc. Can you tell I was frustrated by this task?

Mary2- Maybe instead of exercising, you can spend 5 minutes meditating. One thing I love is tracing the outline of my hand with the opposite finger. I guess my point is to be extremely gentle with yourself.

Tille- Thank you for the message and letting me sit at the table with the cool girls. I tried to respond but was blocked due to inappropriate content!

Aren't y'all so happy I'm back on my A game this morning and full of advice?!

 

[lgelb]

Again, Kathy, an SSRI + Nuedexta slightly increases the risk of ST but it is rare overall and if you thought you saw signs, you could immediately discontinue one or the other drug. It is not considered a dealbreaker by most docs. This is from the Nuedexta label:

Serotonin Syndrome: Use of NUEDEXTA with selective serotonin reuptake inhibitors (SSRIs) or tricyclic antidepressants increases the risk of “serotonin syndrome.”

As you can see, it is not considered a contraindication. They just want you to be aware.

 

[affected]

For some reason I got stuck on being blocked due to inappropriate content and wondering what it was ...

 

[MJT]

I'll never tell....

 

[affected]

OK, you won't tell. Instead, every time you feel stressed, remind yourself what it was, and how much I wanted to know, and take a deep breath. Won't solve anything really, but might just be a little release for you

now I'll just have one more hearty chuckle as I log off ...

 

[MJT]

I truly didn't message you anything inappropriate!!! I promise! I was only thanking you for your message.

 

[affected]

that's what makes it so funny

 

[Tomswife]

Tom is going off Riluzole. There is no benefit at this point. Only side effects, i suppose. Talking to palliative care dr tomorrow and will start investigating hospice. He is really weak and failing.

 

[affected]

I think that it's best to go off if you don't feel the benefits outweigh.
Riluzole is the most help for slow - medium progression PALS.
For those of us with fast progression, it is a different ballgame.
My Chris took it a couple of weeks and said he did not like how it sat in his system and stopped. I'm sure it made no difference in his case. But for many PALS here that are still quite functional years after diagnosis it is probably a great contributing factor.

I hope you have a good hospice service in your area. Be clear with them what Toms goals are for how he wants things to be. Make them agree that they can meet what he wants (rather than have to listen to a lot of what they say they offer).
Hugs, it's very tough, but you are amazing.

 

[Mary2]

Sorry you are at this point Kathy. I thought it might happen sooner rather than later. It is very sad.

I have spoken to two hospices. One answered some questions over the phone but didn't want to come to the house until they had a hospice order. They must be a busy hospice. They are affiliated with the hospital and have an inpatient facility that is suppose to be very good that one can try and get into at the very end.

The second hospice came this week and sent 2 people. There was a marketing aspect to it. And like Tillie says I had to ask a lot questions and keep the conversation off the marketing points. We had questions about the ventilator and meds and if the same aides come every week and so forth.

Again, I am very sorry Kathy. My thoughts and prayers are with you and Tom and your family.