Meeting with ALS Society on Friday need advice

[evansmom99]

Hello
I just wanted to ask for some tips on things I should ask the ALS Society rep when she meets with my family this Friday. I am at the point of feeling overwhelmed by questions and concerns and know I need to take it a question at a time. What are key things I should ask about?
I know my husband needs speech therapy to work on his speech as well as swallowing and our care provider (kaiser) charges a pretty hefty co pay for this. Does the society help hook you up with the local ALS clinic that is through the MDA?
I am also very concerned about our 11 yo son, who I know is very bothered by his dads diagnosis to the point he claims he too has problems swallowing, and is getting mixed messages from his dad who says he is not going to die. I understand he is in denial and trying to cope but want to have a place for my son to vent, ask questions, and get support.
As you can see I do have lots of topics listed here with what feels like a millionn more in my head. I want to use the meeting to the best and not waste time jumping topics.
Thanks for any help... I am still very frightened by the fear I won't be able to take care of DH and my son emotionally and physically.
Thanks for listening.

 

[10steps]

In my experience, I spent about an hour or so with the rep. Tell him her your concerns, financial needs,need for support, housing redesign, and recommended ALS clinics. You'll get some brochures about available grants, when support groups meet, and possibly pamphlets on clinics. For the most part they listen and then please feel free to call them for assistance with paperwork, equipment, etc. I've only used them for a loaner PWC for a couple of months and help with paperwork for some detailed insurance things. We don't have any suppor t groups in our area but I'm sure if I asked for a counselor name they would recommend someone in the area. If you forget something yo can always call and someone will get back to you.
I know its all so overwhelming but you can do it.

 

[brooksea]

I've been trying to respond for over an hour and then my post went into oblivion! I'm so stupid!

The ALSA rep is usually so versed that she will know what you need and you will not have that many questions after they leave. Do ask what services they provide besides the loan closet, such as the building of ramps (our chapter discontinued that).

Does your husband qualify for SSDI/Medicare? You mentioned Kaiser, so I assume it is private insurance. If Kaiser will not give you a referral to the ALS Clinic, the MDA will pay for his visit. He will possibly be better served at a multidisciplinary ALS clinic.

As for your son: Therapy! I know you may not want hear that, but even a few months might be beneficial. Our son is about to be 11 and he went from sweet and helpful to hateful and belligerent since diagnosis. Part of the problem is their age - really tough. He was in therapy for about 4 months, earlier this year. It helped, but he still doesn't really understand what is happening to his dad and why. Hell, I don't know why!

 

[Katie C]

If Kaiser in your area has an ALS specialist, the ALSA people will know. Find out who it is and what office that doctor works at. That made a HUGE difference in the level of care my husband received. It was not anything anyone at Kaiser told me, but I found out through ALSA and was able to follow up.

Also Kaiser WILL pay for a second opinion from your closest ALS clinic... make sure they let you know the steps to take to get that!

 

[evansmom99]

thank you all so much for your reply's. The Gal was wonderful and she had so much info ready for us already I am so pleased by what I learned from her. She states that Kaiser (my hubby is 66 so is on Medicare) is great with ALS patients and their families but did suggest we get husband an appointment for a breathing study. Husband goes back and forth about ALS saying he is not going to die from it and it is a mistake to the other end of being very quiet. I thanfully am aware of the stages of death and dying so know it is normal, and all I can do is reassure him that I am not trying to kill him off by talking about stomach tubes, and advance directives but that I want to know his feelings and wishes while he can still talk to me. His speech and swallowing is very affected and was what got me to get him into the Dr in the first place last year, just took that long to find out why. I have noticed that he is having trouble with balance and will often say he has to sit down. Doing know if it has advanced that quick or I just never paid attention, or connected the dots.. But through all of this I feel very supported and comfortable with the ALS society.. Thanks again

 

[KC2U2]

If you haven't started a binder or notebook, get one going to keep track of questions and answers as well as all the doctors notes