Mom was diagnosed

[jsab23]

hey all, im new to this forum and just have popped by for help, advice or opinion

My mom has been diagnosed with ALS approximately a year ago, prior to that she had many symptoms but we assumed it was from a stroke she apparently suffered month's before that, anyways health care where we are from is not the greatest to say the least as she met with several doctors and neuro surgeons but to no avail until we drove 2 hours away to meet with the ALS team of London where she was diagnosed well long story short it seems her condition is getting worse however unlike most ALS sufferers her symptoms have began and remain in her throat area with first losing speech then the ability to eat (feeding tube installed) now the bouts of choking are becoming increasingly worse, she seemed to have her strength to her limbs but recently suffered a fall, UGH
ok so I guess what I am asking is has anyone else experienced ALS to the throat area exclusive b/c it was to my understanding that that was the final destination the disease hits

also as my mom is 80 and still has her wits about her we have met with Hospice and they recently asked if our mom suffers a severe choking spell do we want her resucitated?
me and my sisters have been chewing on this as how can we say no but we have no idea of her suffering and what day to day is like in her shoes
Thanks

 

[jsab23]

oh also it has been suggested to us for my mom to receive radiation treatments to help with the abundance of saliva she produces in her mouth yet cannot swallow. has anyone ever received this and were there adverse affects from it?

 

[Okie2]

Sorry for the diagnoses of your mom. ALS can start in throat or limbs. As my doctor put it , "People come in either walking or talking." Mine started in my left foot, now in a wheelchair, a fellow pals walks great, but can't talk. Good luck and hang in there for your mom.

 

[momap53]

jsab23,
Welcome to the forums. I'm so sorry that your mother received an ALS Diagnosis.
Some PALS do start with problems in speaking and swallowing. Everyone is different in how the disease progresses. You might do a search of the forums for "bulbar onset" to read about others who began this way.
What kind of feeding tube does your Mom have? Could she be fed directly and only with the tube in order to avoid the choking episodes?
Is it possible that the fall was caused by early weakness beginning in her legs? Perhaps a walker or wheelchair would be in order.
Falls can be very dangerous and even fatal for PALS.
I don't have any info about the radiation treatments but others may.
Please let us know how we can help you. Good luck.

 

[vzandt]

My mom is having radiation treatment for thyroid cancer. (she does not have als). She is 77 years old and halfway through her treatment. The only side effect she has had from the treatment is a cough, feels a little like a cold. I don't know if this helps or not, but I hope it does.

 

[jsab23]

hi thanks your responses
momap53, she is fed exclusively through a g-tube in her stomach, she cannot speak or swallow and has little to no movement of her mouth, lips, tongue
yes the choking episodes are the result of the saliva that she produces, she wears a patch behind her earlobe that she alternates from ear to ear every 3 days that helps slow the production of saliva.

 

[momap53]

I thought that might be the case and that the saliva was the problem.
Do you have suction equipment? I believe some of the Bulbar onset folks have had botox treatments to reduce saliva production. You might try a search of the forums for "drool" or "botox" to see what experience others have had.

How did your discussion with your sisters and Hospice go (on the issue of choking and resuscitation)? My personal feeling is that if something can be done and the problem is reversible, go for it. You'll really have to talk to your Mom about different scenarios to see what she would want. I've filled out a "Five Wishes" form and my daughter who is my CALS has my Health Care Proxy. The discussion is ongoing at our house about what I would want done for me under certain circumstances. I try to make sure that my other two daughters are aware of my wishes as well, but ultimately the decisions belong to my CALS daughter if I am unable to make them.
When my mother (not ALS) was on Hospice, we had a DNR for her. My CALS had accompanied her to the ER several hours away from home for a neuro evaluation after a fall. Mom had a choking episode while there and no med personnel in the room at the time.. My daughter's first aide training kicked in and she was able to clear Mom's obstruction on her own. She was very frightened but did what need to be done. She was upset to hear from the nurse that finally arrived 15 minutes later that because of the DNR she would not have attempted to remove the obstruction. This bothered both of us. I think it's a good idea to have this discussion with the staff of the Hospice you're using to make sure everyone is on the same page.

 

[jsab23]

yes thanks for that momap, what a story!
we are looking to have a chat with my mom possibly this weekend and im sure ill be left with more questions that i can post up on these forums which I have been scanning through and it is a wonderful site with alot of special people sharing and helping

 

[HelenL]

Deb, that was a scary episode for both your Mom and daughter.

jsab23, you say your Mom still has her wits about her, ask HER what she would like – many of us PALS have said we want something and when the time comes, we may change our mind. We also think about what we'd like for our funerals, etc., without sounding too morbid, it's a fact and she may not want to broach the subject with you.

On another note: does she have a communication device that can "talk" for her, or is she writing everything down? If not, she may find it easier to communicate with a computer of some sort, whether an ipad or pc based. Is she being seen at an ALS clinic, if not, they may have loaner equipment with your ALSA...

Good luck, and btw welcome to our forum, though I'm sorry you have to be here.

Helen

 

[beckysuenc]

Deb...
Would you mind sharing your five wishes. I have been struggling with a blanket DNR for the reasons stated.this would really be appreciated.
Thanks
Beckysuenc

 

[momap53]

Becky, our local hospitals and Hospice too) provided a standardized form with room to individualize the responses. You might check with your agency to see if they offer a form for your state. My PWC is charging right now, but I'll look it up later for you.

 

[beckysuenc]

Deb...
Would you mind sharing your five wishes. I have been struggling with a blanket DNR for the reasons stated.this would really be appreciated.
Thanks
Beckysuenc

 

[st123]

If you goo gle 'Five wishes', you will find several sites have online copies. I posted a link, but it went to moderation Guess I should have known better by now. Sorry moderators!

 

[jsab23]

Thanks Helen, im not as sorry to be here as i would be if there wasn't a forum like this, truly an inspiration and eye opener seeing a loved one deteriorate, I just got done reading the book "Tuesdays with Morrie" and if any of you have not read it yet it is a must read especially if your a family member of a ALS sufferer, once I completed the book I started reading again from the start.
back to my mom

yes she has cards that she communicates with but she is 80 and European who didnt learn the english language well so spelling and pen man ship was always an issue and the use of computers are out of the question but she manages to get her point across

 

[lms9258]

jsab23,
There a few things you can try for the saliva/choking episodes. First, if you don't have a suction device, you need to get one ASAP so that anything medication isn't drying up can be suctioned out. Second, ask if your mom can wear more than one patch at a time-my mom did. Inquire about these two medications: atropine drops, and glyccopyrrolate-both dry up saliva and work good. Even with the use of meds, your mom will probably still need the suction device. Sometimes with all of the drying up methods, the saliva can get thick and stuck in the throat. That's when suction becomes absolutely necessary. We then used a mouth moisturizing product, because all of the meds made her mouth so dry. I'm not familiar with radiation treatments or it's effect on saliva production. As has been mentioned, botox injections are sometimes used with success.

From what you've stated, your mom had bulbar onset. My mom did too-so her tongue/throat region was the first destination the disease hit. My mom had a DNR, and I was her POA. Choking was NOT on the DNR list. She had many, many choking episodes, and I did everything I could to bring relief. Choking is very scary for PALS. When caring for someone who can't really tell you everything that's going on, you will find that observation is one of the best tools you have to work with. Can your mom indicate "yes" and "no"? Many times I would ask a question, and have her circle either yes or no. momap53 gave you lots of good advice: do a search on bulbar onset; yes, her fall could be the result of her limbs weakening; if possible, get legal papers filled out, and signed so that you KNOW what your mom wants. Also, there have been many previous discussions on here about choking issues. Search for saliva, mucous plug, choking, etc...There are also "Tags"-- at the bottom of these posts, you will see little words in blue that are useful for further research.

One more thing--the Five Wishes" are quite easy to find on the Internet, if you'd like to check out what they are. General POA, or health care proxy forms contain the same legal language and info, and can be obtained at most health care facilities or from hospice agencies. A DNR is a whole different issue, stating that you Do Not want to be Resuscitated. You then have to wear a bracelet at all times, which proves that you do indeed have one.

I'm so sorry about your mom. Sounds like you and your sisters are doing a fine job. Hope your chat with your mom gives you all some peace and guidance.

Laura