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Tony1739

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Joined
Feb 28, 2010
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5
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Loved one DX
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US
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CT
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Ridgefield
Hi everyone,

First post

My mom was diagnosed with bulbar onset ALS 2/11/10. She has a very difficult time speaking and eating and some weakness in her hands. She is still in good spirits (on the surface anyway). She is very against a feeding tube and anything else for that matter. We bring her to the ALS Doc every 2 months or so. After each visit she seems more and more bummed out. My question is, is there a value in continued visits to the ALS clinic if mom wants no advanced treatments? We are in no way giving up, but on the other hand it seems she is happy just living her life. If there is a value I we well continue to convince her to go. Obviously we want to respect her wishes, and we have not had this conversation with her yet. My feeling is I want her to be happy and comfortable. Right now it seems that staying away from the clinic is what will keep her that way. I just don't know what is the right choice.

I have been reading the forums since Feb. You all are great and have helped me tremendously.

Thanks
 
Gosh Tony, it's hard to say if staying away from the clinic is the best thing. I know what you mean about it, though. My husband gets very down after going, too. However, the last visit was positive. He seems to be holding his own a bit. The good thing about the clinic, is that they sort of let you know what to expect next. It helps me in terms of knowing what equipment might become necessary. Tough call. My thoughts are with you.
 
Equipment is the key thing, like Missy eluded to. The clinic may know what and how to order faster than a GP or neuro unfamiliar with how to treat ALS, due to wording for insurance purposes. She may not want advanced treatments, but she may want a PWC and maybe handsplints to keep her hands from curling or maybe a communication device... Maybe just don't go to the clinic as often? We go every 4 months and hate it. But what other real choice is there, as only the ALS specialists are usually knowledgeable about these things?
 
I have not gone in over 2 years but keep in touch with them when I need something. They have been excellent and since there is nothing they can do about ALS, why go. They told me that so I don't go but every once in awhile send off an email to say hi. Then when I need something I get in touch.

It she does not want to live long by refusing a PEG and trache and vent then I would say - why bother. Sorry if that sounds harsh but what can they really do for her?
 
Thanks everyone for your replies! !

Joel no need to apologize for being "harsh" Thanks for being real. I guess I just have to follow my mom's lead and do what keeps her happy.


You're all in my prayers.
T
 
Wow, we love going to the clinic. Mom loves her drs and nurses...I think she just likes going to socialize. They all love her too. I don't think you should cut ties with them totally. Do you go to the one in Manhattan?
 
Hi Tony
I completely understand where you are coming from with this. My mom was diagnosed also in February with bulbar onset and because she is completely against doctors and any kind of intervention.. she has refused to go to the upcoming clinic next week. Since then she's lost the ability to speak and very difficult time swallowing. As her caregiver, i respect her wishes but because my mom is definitely suffering emotional lability and is not on any medication, i've consulted with our regional ALS manager and we have concocted a plan to get her into seeing a speech therapist at the very least. She's in control and she doesn't have to do anything she doesn't want to... but at the same time, its their job to keep an eye on her, help her with managing the swallowing, and inadvertently.. educating her opinion. Also, as my mom is currently losing about 3.5 pounds a week, I'm hoping that if she changes her mind to get a feeding tube, she'll have a team of people who know her and can help her at a moment's notice. I'm of the opinion that there are ways to go and ways one shouldn't go and dehydration or starvation isn't one of them. So I'm with laura. I don't think you should cut ties completely. Even if it is only you going to a support group or a clinic, and not your mom. She may change her mind, y'know?

Good luck!
-m
 
Laura- ...We go to the clinic in new Britain CT. They are truly a great bunch of people there. My mom gets along well with all of them, yet when we leave there she is depressed. Anyway thanks for the feedback. I like Melalthia's tactic of "behind the scenes " planning with the clinic. Just got of the phone with my sister and we are going to give them a call.
 
Where Rick goes for his appointments (the VA clinic) he is told that he can come in every 6 months or even 12 if he wants to... that they want to check up on him, but if there is really no difference in his condition that is major, just to contact them if there is anything at all they can help with or if we need any mechanical devices or aids. They definately want to know if there are meds needed or if we need ideas for coping, but otherwise we are doing GREAT with dealing with our journey. They say they are only a phone call away and that we can make any quick appointments if they are needed. Rick has decided not to try any of the drugs or to complain if he doesn't have to. There is no cure, and that is the point.

Thankfully he has slow progression. Lately he is having trouble eating breakfast without choking, his balance is getting worse, and his left hand has two useless fingers he can't move or bend. He tries to ignore these changes and begins each new day with determination and resignment. He is my hero.
 
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