Stuck in ALS Hell

[JohnnyMags]

RMT - How do you get evaluated for FTD? I have noticed my wife is often snappy with me even though I am doing almost everything. She also asks the same questions a lot. Just tonight she asked me something she should know and when I said that she says "I can't remember things." I also notice little things that don't seem quite right. This would be just what we need. When she was first diagnosed and I searched for information the two things I found that weren't suppose to be effected by ALS are Bowel function and cognitive function. Now we have G.I. issues and it looks like we may have cognitive issues too. How unlucky can we be first she gets a very rare disease then she is effected in areas usually left alone.

LORI7 - We have a PT girl coming this Wednesday. I hope she can provide the things you have outlined here. As for her weaning off the narcotics she only started taking them last Thursday. After her near fall last Saturday she only took two Oxy and I think no Valium so there should be no withdraw issues

KIMT - It sounds like Oxy and Valium are a bad combo all around. These recent issues does give me another potential thing to worry about and that is if they go forward with the knee surgery there will be opioids involved and I know she doesn't want to go through that constipation again.

 

[JohnnyMags]

To you recent posters ... isn't this fun? I can relate I hope you guys get some relief and I hope that shot isn't as memorable

 

[rmt]

The ALS clinic did the FTD assessment. Apparently, around 30% of ALS patients have assume level of FTD. FTD has several forms. I think most ALS patients with FTD have the behavioral version. I hadn't put together that his behavioral and emotional changes might be FTD. But then he began having expressive language issues that were very noticeable, and it made me realize he was having language-related FTD symptoms. I mentioned it at his next clinic visit. It was during covid so we were online only with the clinic and he had no speech left so it was all written and then I would read it to them, so they hadn't noticed yet. They started including questions at each visit cto figure out what was going on with his FTD.

Once I understood the personality changes were from FTD, it was easier for me to manage my feelings about how things were changing. There was nothing to do to treat his FTD, but knowing the cause made it less frustrating for me in some ways (because I knew it wasn't something I could fix and it wasn't because of something I was doing).

 

[lgelb]

Constipation and urgency (sometimes both) are pretty common in ALS. Those muscles get weak like other voluntary muscles in ALS. This can make it hard to push and also hard to hold stool in.

Cognitive issues, loss of empathy, and emotional swings are also pretty common, too. But the recent pain, drugs, maybe dehydration/less nutrition could all play a role. So it's not clear what Marie's current "baseline" will turn out to be.

Usually there is a neuropsychiatric specialist at clinic that can do an evaluation. They may be available in between clinic appointments.

 

[JohnnyMags]

If you can't do anything about it (FTD) why do I want a specialist doing an evaluation?

 

[KimT]

I would want a professional evaluation because it might be something else that has treatment such as depression or dehydration.

 

[rmt]

You want to know if it is FTD or something else. And it will help you understand what is going on and how to plan for what might be ahead.

 

[drewidia]

Johnny - I would echo the few posts above. Finding out what it is, MCI or FTD or other things is best for the caregiving (socially and emotionally for the CALS is really important). It's not about treatment but insight as FTD comes is a overlap with very specific behavior / language / cognitive changes AND there are many drugs that can make FTD symptoms worse.

My only added thought here is Find/go to a behavior/cognitive neurologist who specializes in AD, bvFTD. ALS and FTD share a common thread which is TDP-43 you can read about. Remember it 2/3 chance it's not FTD.

For me (as a FTD-ALS) bvFTD our doctor was adamant around routine/structure etc... rapid changes lead to regression and for my wife now that she knows about the FTD - she manages me very differently (and to the point above has an understanding "trying to change me/my mind" is pointless and it's not her).

Lastly, in our first ALS clinic visit yesterday, they started to talk about PEGs, Tracheotomy and BiPAP with my wife (and me). The bottom line point is apparently if we don't start this stuff earlier I won't be very easy or compliant with these, but they are talking about PEG for me early as with FTD there is more likelihood it will be ok, even if we don't use it in the short run, it's there. Slow "orderly" changes work best for me.

 

[Nikki J]

Thank you for sharing D. I am so glad you have great guidance from your care team and your wife is so good at carrying out routines. And extra kudos to you for your work and excellent attitude even though faced with huge challenges

 

[JohnnyMags]

Well we continue in ALS Hell. I have been trying to decide on a pwr lift/recliner and I came across a good deal on a Golden thru Ebay. By luck it's only about 40 minutes away. I told my wife we can go look at it as she needs to get out of the house to which she said she can't go. Her reason for not going out is her constipation has turned into frequent bathroom trips for #1 or #2. Right now she can barely make it to the bathroom and she has had a few accidents. I said we need to find a doctor to address this frequency and she said as she broke down in tears that this is an ALS symptom. Then while crying she said she thought when she first heard she had ALS that she would just go to sleep one night and never wake up. Needless to say I got rather emotional hearing that. Although not waking up is probably not how she will go it still shakes me to the core. How do we live ignoring the inevitable? She seems to be getting worse by the day. It's been 7mos since our diagnosis and all I think about is where are our 3 to 5 years? Like I said this is hell.

 

[Serenity]

Johnny, I hope you and your wife might be having a better evening. Sorry to hear how difficult things are going....

To answer your question, there is no way to ignore the inevitable, but as difficult as it is, living in the present moment, and not worrying about the future so much, has really gotten me through hard times, first with my husband's health issues, and now my own. None of us, healthy or not, know what tomorrow will bring.

" Worry does not empty tomorrow of its sorrow, it empties today of its strength".

Also, asking for help from others is important. I've not been good with that in the past, and am trying to lean on others more. We can't do it alone. I hope for you, even if your wife is not wanting to go out, that you can get out sometimes, and have someone come sit with her. Being a caregiver is rewarding but challenging, and you have to take care of YOU, to be your best for her.

Hoping things stabilize soon for you both. Take care ~

 

[JohnnyMags]

Thank You Serenity

 

[Serenity]

Anytime