Need help or advice

[joachiba]

My mom was diagnosed with als about a year and a half ago. She started with slurred speeh about 3 years ago. She is now mostly dependent on the wheelchair but still walks with a walker, has no speech and chokes frequently when drinking, eating or laughing. She is recently struggling with her breathing and she is feeling like her throat is closing. She was just in the hospital earlier this week and my father feels like it is panic attacks. I am struggling with a lack of information, my father is the one that takes her to doctors and he is not the communicator in the family. I know he is doing his best to deal with this as well but things are getting worse and it doesn't seem like the doctors are coordinating efforts at all. She feels like she needs a nerve pill or something to calm her down. The neurologist won't prescribe anything and wants the pulmanary guy to do it and his is on vacation until next week. His backups won't do it without him either. Earlier this month her blood pressure was going up and they put her on something which made her breathing worse and heart race. It was a drug ALS patients should not have been on, then they tried another and she ended up in the hospital because she had an allergic reaction to it. I asked my dad if the ALS assoc could maybe guide us on what we should or could do and then found out the case worker assigned was reassigned and we are waiting for a call back. I am so frustrated because I don't know a lot about what we should be doing or what is to come. Is the feeling of her throat closing normal and part of the disease? She was also told to get a feeding tube back in June and has not thought she really needs it yet. If anyone can direct me to a support group where I can talk to someone in the st.louis area that would be great. Any advice or thoughts would be greatly appreciated.

 

[ccurths]

I put the feeding tube off for too long and lost a lot of weight. Don't put it off for too long. You need information and the doctor should be giving you that or sending you to ALS chapter. Being informed is so important
Blessings, Cathy

 

[brooksea]

Sorry about your mom!

The ALS division of the MDA has valuable information that covers many aspects of care for pALS. Do a search with ALS and MDA, then choose resources from their top menu, then choose caregivers.

 

[Atsugi]

Welcome to EGYPT! where all around you flows DENIAL! Your mom doesn't think it's ALS, you dad thinks it's "nerves" and no proper doctor wants to butt in on the drama. And, as you've discovered, doctors rarely coordinate with each other.

My mom was convinced my dad had "allergies" all through 5 years of non-communicative dementia. She insists that her Congestive Heart Failure is just a little "water on the lungs like everybody gets at my age."

If your folks are WWII generation, they were brought up to believe that one should "tough it out" without asking for help, so they might totally reject any suggestion of a support group, as going against the values that won the war and saved the world.

Unfortunately, your folks are competent adults, and can manage their own healthcare as they wish. If you can't persuade them otherwise, then you may have to let them live their own lives whether you agree with it or not.

 

[Zaphoon]

joaschiba,

It really sounds like your mom has bulbar onset ALS which effects the muscles involving speech, swallowing and breathing first, as I understand it.

My advice would be to get your mother evaluated for a bipap and feeding tube. It looks like ALS has effected these muscles and they are in a state of decline that is hampering you mom's swallowing and breathing.

I'm very sorry for your mother's diagnosis.

 

[Atsugi]

Welcome to EGYPT! where all around you flows DENIAL! Your mom doesn't think it's ALS, you dad thinks it's "nerves" and no proper doctor wants to butt in on the drama. And, as you've discovered, doctors rarely coordinate with each other.

My mom was convinced my dad had "allergies" all through 5 years of non-communicative dementia. She insists that her Congestive Heart Failure is just a little "water on the lungs like everybody gets at my age."

If your folks are WWII generation, they were brought up to believe that one should "tough it out" without asking for help, so they might totally reject any suggestion of a support group, as going against the values that won the war and saved the world.

Unfortunately, your folks are competent adults, and can manage their own healthcare as they wish. If you can't persuade them otherwise, then you may have to let them live their own lives whether you agree with it or not.