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Feb 28, 2007
Loved one DX

I have posted a few questions here for all of you to help me help Mom with her ALS. For a refresher, mom is 74, was diagnosed in February with Upper Bulbar ALS, which she has had symptoms of for 1+ years. Mom also lives 600 miles away with 1 daughter, and a son close by.

Mom can not speak where anyone can understand more than 10-15% of what she says, but she is adament about not even looking at devices, and insists on talking. I am grateful that she does communicate with the out of state family, via computer.

We go back to clinic, for our first check up, this month, and today, she said, that we should go out to eat, instead of attending the ALS social the night before.

It seems that Mom is avoiding all options of learning how to live with and deal with ALS. Or is it me? I would like mom to enjoy her life with quality when available, but if she shuts down, and closes her mind, she will not have quality, I feel?

Any tips on encouraging her to stay open minded, or me to quit pushing when I should are appreciated.

Hi Bellard. Interesting situation you have there! I can see where you don't want to set up a lot of tension between you and I can see where you need to know she's as informed as possible and set up with all the support she may need since you live far away from each other.

Some families would handle this in a family meeting. If you decide to go this route make sure everyone promises to listen to her objections and present the wish to learn more about her disease as a need of their own. Nobody can object to your need to know what to expect in the future and what services are available, just to relieve your own anxiety and out of love for her.

Another option might be to support her wish to sit in the coffee shop while you attend the social so that at least one of you can begin to understand what the future holds. That way you'd have information to help relieve your own anxiety and information ready for when she starts asking for help.

These are just a few ideas. I am sure others will weigh in with bettter ideas. When you do go to the clinic be sure to ask to see the social worker. There is a pretty good bet they have seen patients who choose to deal with things as your Mom is right now and they may have helpful tips to offer. Good luck and let us know how thigs work out! Cindy
Hi Bellard. It sounds to me that your mom is in denial or afraid of what she may see at the social. There may be others there that are much worse than her and that could be scaring the heck out of her but she doesn't want to say that. I was at a Walk for ALS meeting the other night and there were 2 ladies there that have a sister with bulbar ALS. She wasn't there. When leaving they said that it wasn't as bad as they expected. I knew that they expected to see people a lot worse than they did. Try to tell your mom it might not be as bad as she expects. We have an illness. We are still people. If you put it to her like that she might reconsider.
Good morning Bellard, (sorry this is kinda long!)

It is eerie to read your post because I have been through this very recently with my mother, who also has bulbar ALS, who just turned 75.
At first, she reacted VERY much like your mother. She was in denial about having the disease up until her actual diagnosis at the ALS clinic (altho a separate neurologist told her she had it a few weeks prior), and even after that, I detected some hint of remaining denial.

My sister and I had done a lot of research and discussed with her things which would help her cope with her symptoms, which included the speech problems, constant choking, weight loss, malnutrion, etc. To her, a feeding tube was out of the question, a breathing assist was too. Fortunately, the staff at our clinic here in Oklahoma City was wonderful about explaining the benefits of both and she ultimately agreed, albeit somewhat reluctantly, to both.

Like your mom, we can only understand about 10% of what she says, and mainly that is because given the content of the conversation, knowing how she might respond. She, however, DOES want a voice device, but she's really wanting something very small so she isn't seen carrying around a laptop size computer. I think we're working on getting her to understand that a larger device, like the dynavox, is far better than something smaller with lesser functions.

For me, I found constant nagging :) to be a benefit in getting her to at least consider some of the things to help her. That's just my nature and I felt it necessary to make sure she was at least aware of what there was and how it could help her before she flatly refused to use anything. I guess that at 75 years old, if she wanted to make a decision not to do things to help herself, as long as it is an informed decision, it was her perogative - even if it is something I don't agree with. Even though she has agreed to some things, she's still reluctant to utilize them fully (ie. resists using the breathing machine, rarely gets 5 cans of formula a day, etc.).

Again, I'm sorry this is so long, but I understand your situation and want to help. Feel free to private message me and I'll support you in any way I can. Hang in there - we can all get thru this together!

God bless,
keep thoughts coming in. So far all are great!


Thank you so much for all these responses so far. I had told my husband about some of the folks on the forum, and was correct in stating that I would at least hear from Al and CindyM and nsmith555 really makes me feel okay.

Some people call me a nagger, like my husband, but I do not consider it nagging.LOL

I just want what is best for my loved ones. So here is the update.

All the family and my daughter and her husband, agreed to avoid the clinic and support Mom's wishes and go out to eat instead. As you can imagine, I had to justify, to them, why my husband and I still wanted to attend. So I e-mailed the team social worker with my delima, and asked her for information and guidance.

She replied quickly, and said it was really an open house to answer questions about the clinic, and offer information of what to expect to ease anxiety. I forwarded her e-mail to the sister, who said thanks I had no idea it was going to be that. And then she asked me, to tell mom this new information, to see if I can convience mom to attend, but they will go wherever mom goes.

HMMMM, well mom has a stressful day at work today, so maybe, I will give it a day or 2 and see if I can offer the information, without nagging.

Keep coaching me folks, cuz I want to be informed, even if I am the only one, at least when mom needs it, I would have it, or know where to get it.

Thanks so much
That was a great idea to email the social worker at the clinic. I'll have to rfemember that tip! Thanks for sharing. Cindy
Latest Update


Well, as most everyone in the family, had the wrong idea about the night before clinic, I passed on the information for them to be able to make an informed decision. They all acknowledged it was differnt than what they were thinking, but still would support mom in her decision not to go, and they would not go either. I said the only thing I could, that it was their decision, and I will respect that, as long as they respect mine to attend, and meet them at the resturant later.

There is a very special person throughout all of this, and that is my husband. He wants so bad to make things right, and not let me make a decision, that I will regret. Ah, but we are both so head strong. He strongly beleives everyone should attend, or if no one else does, he wishes I would go with the groups decision to show team unity. Me the differnt one. He even went so far to say, that if I insisted on going, then I was going for me, not mom. So, maybe I am going for me, to better be able to help mom with the clinic day?

Yes and as I sit here writting, my feelings, I wonder if it is all pointless. The monster will do what he wants to mom regardless of what I may or may not do!There is a fellow in our support group, who lost his wife to ALS, 4 or 5 years ago, and he refers to it as the monster. I wish for everyone, that someone would slay the monster.

So now, I see just how fragmented the whole family is, even mine. We are aoll scared of what this weekend will bring. We would all like to run. But Mom cant run, and none of us will leave her alone, with the monster. I now understand how powerful the forum is, because, finially, I can voice that I am scared too.

Thank You
So Bellard, What was the final result? Did you go to the social or did yu go to the coffee with your family? And how did your mom's visit with the Dr go?
We just got back>

Okay so here is the latest. Even though mom tried to demand that no one go to the open house, My husband and I did go. Mom said, " I am not nerveous and have good medicine. I do not need to go", and I said we were, and I hoped that was okay with her. She asked Why, and I said because that is what we do, we go and learn whenever we can, so that maybe, we can learn something that will help, one day, in the future. And also, because the clinic thinks it is important, and since the clinic is important for your future, and ours, we need to support them as well, by showing we agree, it is important.

She never said anything about it again, except to ask, if we had arranged the transportantion for them. And of course, she had our daughter call us, at the open house, at 7:00 to find out when we would be with them. At that point, we were already on our way.

When the clinic happened, we were all there, but some of us, missed some of the meetings, with different doctors. It seemed that everytime, a doctor would come to get her, some of us were missing, and I was always left to watch the purses. Thank goodness, some actually met with her in the waiting area, so I got to hear some, and ask some questions. I will fix that problem before we go again.

Mom has lost some breathing capacity, but no one seemed real concerned. Other than that, they all seemed to feel she was holding her own, acknowleding the speech lost.

We really felt it was a positive visit as far as that went.

We asked my siblings for a meeting to try to discuss, what we can offer as help, and see if anyone had any future plans, or thoughts. Their position, is, when mom wants something, she will ask, and then we will see about getting it. And that thought even extends to information.

So we here, 600 miles away, will continue to seek, learn, and study, and at least make sure, that Mom has information we find, to make her decisions.

That is the general summary, and we continue to move forward. There was actually a MDA/ALS support meeting in Houston Staurday, so we went. facilitating it was our social worker, and MDA rep. It was very good, for them to hear from us, and us to hear from some others. And Then Tomorrow, we attend our first MDA support meeting here. We have been with the ALS, group here, but this will be the first MDA/ALS crossover up here, it seems.

Thanks and keep talking!
Hi Bellard, I also have a speech problem and I use a litewriter, it will fit in a med. to lg.
handbag. It's hard when you can't jump right in on a conversation. I'm trying to use it alot where I can feel like a part of the conversation. But I do understand your moms feeling. My first support group meeting I had to leave the room and cry. They were people there worse off than me. But it did help my husband and I to understand certain things better. My husband tries to go every month, I quit going, because I was battling depression and now I am taking something to help with that. I did the als walk Sept. 06
in Atlanta and that was a emotional day, but it was fullfilling also. My team has already started raising money for this year. I also did an article in the NALC Bulletin that will come out in June. I find that by reaching out to help bring awareness to this awful disease, helps me. Wishing you the best with your mom and family. Rhonda
Hi Bellard,
we are in the process of deciding what the best method of communication with my Mum is. At the moment, we are doing a pretty good job of guessing what it is she is trying to say. Sometimes, it is frustrating.. other times.. it's quite funny. The advice given to us while we wait for some sort of communication device was from her speech therapist. My mum takes two to three breaths (whatever she can get into her) and then says only one or two words very slowly and then takes another two breaths and says another word or so, again slowly.. it involves a great deal of patience.. but, I was shocked by the clarity of her words compared to the groans and slurs we had previously heard.
Good Luck.
Paula Jane THANKS

THe perfect tip! Breathe and speak the word...simply put and very practical!
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