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Tonya

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Apr 5, 2007
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Loved one DX
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US
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texas
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carthage
I have learned so much on here, like bipap machiness can help my dad a great deal conserding he can't sleep in bed cause if he lies flat he can't breathe, If he talks to much he can't catch his breath. I have talked to him till i am blue in the face and it doesn;t seen to help...He always has the same amswer, God knows when it's my time and if it's my time i'll go with a machine or without....How can i make him understand he is all i have left and i need him to be around a little while longer? I mean weonly found out he had ALS in Sept. Nowhe can barely walk, lost sooooooooooo much weighthas trouble swallowing...How fast does this damn diease progress...I keep asking myself why my dad? Someone whowould do anything for anyone..Not a selfish bone in his body...But i guess everyone asks that,,,,How can i make him understand these things will help him?
 
You have to tell your father that there are things outthere to help him be more comfortable like meds bipap and interventions It wont change his diagnosed but will help him deal with the discomfort of his breathing and eating,you father sounds depressed and who could blame him, but with meds he will feel less depressed so he will be more willing to get help. Pat
 
I'm sorry about your dad. I have similar issues with my mom, but the reality is that they are responsible for themselves. I have such hard time dealing with that fact! My mom was looking for a "magic bullet" to help heal and there just isn't one. Your dad doesn't necessarily have to stop seeing the quack if she gives him hope. There are many good, supportive ALS experts out there---get him to an MDA clinic for breathing support and whatever else he may need while he waits for the quack's cure to work. THey're not necessarily incompatible. My mom's dr. didn't discourage her from taking her supplement that she said gave her so much more energy, but he doesn't recommend them. If it makes her feel better, it's okay with him!

A bi-pap is just a mask-type thing that helps support the breathing. A ventilator is invasive life support. My mom definitely won't do a vent, and may refuse a bi-pap as well. Unfortunately, short of making sure they are fully informed of their options and the pros and cons, there is very little we can do to influence the decisions.

Hugs! I know how hard this is for you. My mom was just diagnosed in November. Interestingly, she has only had 1 EMG which indicated MND, not necessarily ALS, but she has certainly proved it clinically with her steady downhill progression.
 
Hi Tonya. If your dad believes in God there must be somewhere in the Bible that says not to give up your life needlessly. I'm sure someone reading this can help me here. You have to impress on your dad that God provides us with food to maintain life and we eat to live. Going without necessary help that is available just seems wrong and most Christians would agree. I don't want this to get into a religious debate here but it might help your dad if he thinks this way.
AL.
 
Al said:
Hi Tonya. If your dad believes in God there must be somewhere in the Bible that says not to give up your life needlessly. I'm sure someone reading this can help me here. You have to impress on your dad that God provides us with food to maintain life and we eat to live. Going without necessary help that is available just seems wrong and most Christians would agree. I don't want this to get into a religious debate here but it might help your dad if he thinks this way.
AL.

Hi Al,
Until about 2 months ago my dad didn't talk like this but he has started going to an alternative quack and he knows nothing about an pipap machine, he just thinkshe is supposed to live in a chair because she says she can cure him,,I have never hated anyone but i almost hate her...she fills his head with all these promisesand then he is depressed when he figures out that maybe she was wrong,,, Until i got on here i never knew all these things were available for als patients,,,like the bipap machine and the braces for his hands...thanks so much for the info you and all of ya'll have provided...any advice is truly welcomed...i will do anything to get more time with my daddy
 
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Hi Tonya,
You're a good daughter. I am going through this with my mom who was diagnosed last month. Today she got her bipap and is set to get a feeding tube on Monday or Tuesday. She is being treated through an MDA/ALS clinic and they are GREAT! If you can find one in your area, try to get your dad into it. They are so nice and upbeat yet firm when they need to be about what can really help her be more comfortable.

I hope you will learn more about what can help your dad, and YOU, as you deal with this disease. It is hard to deal with things when you don't agree with a parent's choices, but I'm not giving up throwing my two cents in any chance I can get!:)
 
Another thing....
I noticed in another post you said you didn't have an ALS clinic near you. In Texas, there are three listed on the MDA's website...one in Dallas, one in Houston and one in San Antonio. I don't know how difficult it would be to get there from Carthadge, but I'd give it a go!
 
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