ShellyRenee
Active member
- Joined
- Jun 23, 2005
- Messages
- 30
Good morning to all
Thank you for all of your responses to my question of how do we know that the rilutek is working.
After I read over the replys I thought maybe I sounded as if I didn't feel my mom was worth spending that kind of money ($900.00) a month. With all of my heart I didn't intend for it to be taken in that way.
This disease is a very complex one. No cure, No idea of how ones life will be with it and really no concrete answers. There are questions I have but fear to ask them because I fear I may upset someone here. So what is one to do?
Does anyone know who could tell from someones ALS (everyone is not the SAME) of what their life will be. With mom having it the way SHE does, mouth/throat and her hands are getting weaker by the day, and she is coughing all the time, what can we expect? When we ask the doctor the answer is "I'm not god, I can not tell you that"--" but statistically a person who has been diagnosed with ALS lives from 18 months to 5 yrs. from onset of symptoms". Reading here on the forum there are many people who have been diagnosed for many years, which is great or is it? What kind of daily life do these (you) people have. I can only speak for MYSELF but I don't think I could or would want to live if I couldn't hug my kids or tell them how much I loved them. From what I have heard is when one is at that stage of their ALS their minds are the same as before the ALS. To me I would feel trapped. I am sorry my heart hurts right now, it hurts for all of you who have been handed this cruel disease.
For the NORD, I have checked into this and you do have to qualify. Meaning they need to know EVERYTHING you have, your money, belongings, your worth. My parents did well for themselves over the years running their own business. By no means are they millionaires but they could of had a great retirement together and had not to worry. The cost of the Rilutek being $900.00 a month will drain anyone fast. If this medication worked (with proof) then by all means I will be the first to stand in line for mom. So if she does continue what is HER last "3 months" going to be like? She will be 64 on the 25th, if my dad follows in his parents footsteps then he's going to have at least another 20 yrs left with us. Being 64 you really can't build back up all of the $900.00 a month spent on Rilutek. What is one to do? Will we ever know? Should we just go with our gut instinct? That could sound selfish.
I feel lost, confused, sad and hurt. Life really stinks sometimes especially seeing (watching) someone you love very dearly go through something like this.
God bless all,
Shelly
Thank you for all of your responses to my question of how do we know that the rilutek is working.
After I read over the replys I thought maybe I sounded as if I didn't feel my mom was worth spending that kind of money ($900.00) a month. With all of my heart I didn't intend for it to be taken in that way.
This disease is a very complex one. No cure, No idea of how ones life will be with it and really no concrete answers. There are questions I have but fear to ask them because I fear I may upset someone here. So what is one to do?
Does anyone know who could tell from someones ALS (everyone is not the SAME) of what their life will be. With mom having it the way SHE does, mouth/throat and her hands are getting weaker by the day, and she is coughing all the time, what can we expect? When we ask the doctor the answer is "I'm not god, I can not tell you that"--" but statistically a person who has been diagnosed with ALS lives from 18 months to 5 yrs. from onset of symptoms". Reading here on the forum there are many people who have been diagnosed for many years, which is great or is it? What kind of daily life do these (you) people have. I can only speak for MYSELF but I don't think I could or would want to live if I couldn't hug my kids or tell them how much I loved them. From what I have heard is when one is at that stage of their ALS their minds are the same as before the ALS. To me I would feel trapped. I am sorry my heart hurts right now, it hurts for all of you who have been handed this cruel disease.
For the NORD, I have checked into this and you do have to qualify. Meaning they need to know EVERYTHING you have, your money, belongings, your worth. My parents did well for themselves over the years running their own business. By no means are they millionaires but they could of had a great retirement together and had not to worry. The cost of the Rilutek being $900.00 a month will drain anyone fast. If this medication worked (with proof) then by all means I will be the first to stand in line for mom. So if she does continue what is HER last "3 months" going to be like? She will be 64 on the 25th, if my dad follows in his parents footsteps then he's going to have at least another 20 yrs left with us. Being 64 you really can't build back up all of the $900.00 a month spent on Rilutek. What is one to do? Will we ever know? Should we just go with our gut instinct? That could sound selfish.
I feel lost, confused, sad and hurt. Life really stinks sometimes especially seeing (watching) someone you love very dearly go through something like this.
God bless all,
Shelly