pwc

[tinyandme]

Got fitted out for hubbys 1st pic today. Sad but happy day. Sad he needs it, glad he'll gain some independence back. Cost is frightening though! Shouldn't complain I guess with so many Americans on forum, our gov't plays for 75% atleast? Beats me how I raise other 25% though. Anyone ever tried a fundraiser for their PAL?

 

[Barbie]

Don't know the rules and regs in CA, but here medicare pays 80% and we have to pay 20%. If you don't have it, the chair manufacturers will "write off" a part of it (so over priced that is easy to do), and the ALSA and MDA Both have assistant grants. I think a fundraiser is a great idea and many people do them. do you have a church, or a local business that would help you out? I have seen golf tournaments, bowl a thons, chili cook offs, bake sales.

it is daunting...

 

[MaxEidswick]

>Anyone ever tried a fundraiser for their PAL?

Barbies are good ones. Start w/ mfg and see if they will reduce the price. I think our VA gets 50% off ...

 

[tinyandme]

Breathing tests today. Dropped from 60 %~ 20% in less then 2 months. Bi pap on order, can take up to a month to arrive. What the check do we do in meantime?! Knew it was worse but 20%? Number alone makes me panic..

 

[Nikki J]

I am sorry to hear this. Was he able to make a good seal? If he was not the numbers will be inaccurate.
A MONTH to get bipap?! That is absurd. I realize things are different in Canada but there is no reason on earth it should take a month. It is not like they are building a machine to his specifications. You get the machine and they adjust the settings. Do the neuro and the pulmo physicians know about the month wait? Call them and insist they do something about this. A month is ridiculous when he is working so hard to breathe!

 

[zoohouse]

I would call the ALS society in your area and see what they can do. We have a PROP (Provincial Respiratory Outreach Program) program that supplies bipaps and even ventilators for people who meet the medical criteria. This may be specific to BC, but your ALS society there would know if you have one that is comparable. If not could you rent one from a medical supply store?

Paulette

 

[tinyandme]

ProResp rep said adp funding from gov't pays for machine. Paperwork takes up to a month, so no machine til done. Said we could rent for $400/month. Sadly we really don't have it.. will email ALS society contact. Thanks everyone

 

[SMP51]

that drives me insane! paperwork taking up to a month is BS! funny the paperwork to "rent" it is instant!
and I think that bs is universal....grrrr. >: (

hopefully your local ALS society can help

 

[tinyandme]

No help available from ALS society. I guess he's struggled past month what's one more?! Also told him if he wants feeding tube he must decide by Friday as safe window for surgery rapidly disappearing. So fast! We figured a year or 2 til we had to even think of it..

 

[SMP51]

go to Catholic Charities and explain to them the illness, the situation and financial burden and they may help. If not, try Good Will Easter Seals.

 

[SMP51]

and talk to someone n charge, not some lackey

 

[MaxEidswick]

>No help available from ALS society.


try: http://muscle.ca/

 

[Janie H]

I understand, I just found out today that my trilogy will cost me $400 a month and that's just the 20%, back to the paperwork, looking for help, the new gap insurance did not cover anything.

 

[MaxEidswick]

>?I understand, I just found out today that my trilogy will cost me $400 a month and that's just the 20%, back to the paperwork, looking for help, the new gap insurance did not cover anything.

MDA or ALSA?

 

[Janie H]

Thanks Max! I will try everything