Re: nne My Dad and ALS

[Guest guest]

Thanks nne!

Amy,

Thanks for the update. Continued prayers for your Dad.

Hugs

nne

On 8/4/08, RubyFireDragon76aol <RubyFireDragon76aol> wrote:

Hey all,

Ok, so we finally met with the doc and she has dxed my Dad with Bulbar ALS. Basically, this means that his mouth, tongue, throat and eventually pulmonary muscles will be affected the most. He will down the road need a respirator. However, some good news. She is starting him on Rilutek which the drug for ALS. Like our CRAB drugs it's not a cure but it slows the progression of the disease especially in those with Bulbar ALS. With this though, my Dad has been introduced to the world of rare diseases and the drugs that treat them, the one we all belong to. I had to explain to him that he can't just get the med filled in an hour at the pharmacy and that more than likely it's going to be expensive. Sure enough, the girl behind the desk had never heard of it and once she found it on her computer it cost flat out $900! Fortunately, my Dad's insurance copay is $40, whew! But here's the really cool part, my Mom and I looked up info on the ALS Association site and congress just passed a bill giving full medical coverage to veterans with ALS. My Dad was drafted back during Vietnam and sure enough we called the VA and they can give him all sorts of benefits for care. Basically, anything he needs medically for the remainder of his life! Now on to Disability and Social Security benefits. I doubt that will be as easy but we have to say positive. So we're still staying the course here. Thank you everyone for your good thoughts and prayers, you're a great source of support!

Love and Hugs,

Amy

Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos.

-- Breast Cancer Patients Soul Mates for Lifehttp://breastcancerpatientssoulmatesforlife.bravehost.com/ Anxiety Depression and Breast Cancerhttp://health.group.yahoo.com/group/AnxietyDepressionandBreastCancerAngel Feather Loomerwww.angelfeatherloomer.blogspot.comThe Cancer Clubwww.cancerclub.com Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos.