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ShellyRenee

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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
 

trisha p

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Hi Shelley,
From what I understand, no one except those going through this personally can tell you what their life is like at any one stage. I think what really matters, from what I've read and from what my brother says, is the love you share with your family and friends and the attitude which one chooses to have concerning their life and how they want to view having ALS. I can't speak to that because I don't have it, my brother does and I totally understand how you are feeling. It's frustrating to watch someone you love go through this. The best thing to do is to listen to what THEY need and want and to just love them. As for the Rilutek, my brother decided against it due to the cost combined with the average benefits of 3 extra months. To him it just wasn't worth it but it's also an individual decision that should be weighed against it's potential advantages and disadvantages (i.e. side effects).
 

trisha p

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Hi Shelley,
From what I understand, no one except those going through this personally can tell you what their life is like at any one stage. I think what really matters, from what I've read and from what my brother says, is the love you share with your family and friends and the attitude which one chooses to have concerning their life and how they want to view having ALS. I can't speak to that because I don't have it, my brother does and I totally understand how you are feeling. It's frustrating to watch someone you love go through this. The best thing to do is to listen to what THEY need and want and to just love them.

As for the Rilutek, my brother decided against it due to the cost combined with the average benefits of 3 extra months. To him it just wasn't worth it but it's also an individual decision that should be weighed against it's potential advantages and disadvantages (i.e. side effects).

Don't be afraid to ask any questions here. If we can answer them, we will give you our honest answers. There are so many wonderful peopoe on this forum, who I know have helped me through some of the difficult times. Stay strong! It's a difficult journey to be on but it's one you will get through.
 

Granny

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Dear Shelly,
Just let your Mom know that you love her, that she is still the same person and that you are there for her. That is what is most important to me. I cannot talk, and if someone had told me a couple of years ago that I would be without my voice, my reaction would have been the same as yours. I would have thought I would not want to be here and could not go through it. But, the will to live is strong. I look at the things I can still do, knowing that they will probably be taken from me also, but I cherish them each day. I think we are given strengh, I say from God, others may differ, but a strength to get through whatever comes your way. Sure I have days that I wish I could go out with friends and have a great meal, or some muchies, but mostly I can dwell on the positive. I don't know if I have expressed what I mean or not, but hope it helps you to realize that your Mom can still have some moments to treasure.
As far as prognosis, I think nobody really knows. All are so different. I take Rilutek, but who knows if it does any good. Mine costs $720 per month, of which we pay $140. Our health insurance pays the rest. I know, Shelly, that if there was any chance that it would really help your mother, that you would gladly pay the money, but it is such an uncertainty. And as you say, what are those extra three months like?
Being a great support to your family is such a help-give lots of love and hugs.
Leah
 

jojo

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Dear Shelly,

Hi there. Newbie on this site. Ditto everything Granny said - said it better than I could. Here is my situation... I was diagnosed Sept 2000, with symptoms from Sept 1997. Initial symptoms were slurred speech, some choking and drooling, dropping things, and tripping. It took 3 years, many neurologists, and countless tests to confirm the diagnosis. My form of this condition involves mainly upper motor neuron damage - very little lower motor neuron involvement - perhaps that is why the progression of this disease has been quite slow for me. Over the past 5 years, I have gone from walking without assistance to using a cane to using a walker. Also, I use both a manual and a power wheelchair, as necessary. I can still talk (I sound very drunk), but sometimes I cannot be understood. I take Baclofen and Neurontin for the cramping and spasms, plus a truckload of supplements. I was on Rilutek for 4 years, and went off it 1 year ago due to the side effects and the cost. I really have not noticed any difference regarding the speed of my deterioration.

That being said ... before I got sick, I thought that I would not want to live if I were ever severely incapacitated. I have changed my view drastically now! I'm happy watching someone play golf or swim in the ocean, even though I can no longer do those things (although I do have a good pout now and then!). If I cannot tell a joke because of my speech problems, I'm happy being around friends and family who can. Being surrounded by love is the key.

Keeping control over decisions affecting my care and my future is also very important to my self-worth and wellbeing, especially when those decisions may be very difficult to make - for example, whether to continue with the Rilutek. Just my view - hope it helps!

Love and light,
JoJo
 

TBear

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Great Stuff JoJo:
It's not easy to accept this sickness... and attitude is everything. You sure have healthy dose of that (also not uncommon on this site). Now if you could only get into the ocean!
I used to take my wife to our cottage on weekends, even when she was almost completely paralyzed. We wheeled her down to the lake, threw on the life jacket and pitched her in. We swam with her and even hooked her jacket up to the dogs tail so she could drag her around too! She would spend almost her whole day down on the dock swimming (as it were), sunning, reading and drinking wine. They were great times for all of us and helped her attitude (and humour) immensly.
CHeers

T.
 

Al

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I miss the scuba diving and other water sports too. My breathing has gotten so crappy that even being in water up to my neck in the lake or hot tub causes me to have to struggle to breathe.
Asked the doc about it and he says the water presses down on the diaphram ands the muscles are too weak to do the breathing in and out thing. So no more than up to the waist for me. Any deeper and I might spill my wine anyway.
 

TBear

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... and that would be a tragedy! We put Mary in the lifejacket to keep her horizontal in the water... and had one of those floaty lawn chairs that kept her sitting up. Spilled her drink a few times but we didn't have to clean it up... just refill!
Have a good one Al

CHeers
T.
 

dsmode

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hi all, i dont drink wine but reading your posts maybe i should. a bottle of boones farm in my teens did me in. couldnt drink wine after that. but the others r right, simple things in life give so much pleasure. i look forward to my baths. my husband scrubs my hair the longest time, not because it needs it, but because he knows i enjoy it, love in action. by golly i even love my dog more, she sits at the foot of my wheelchair guarding me even after i have run over her tail and paw, ouch. that is loyalty. now, my sixteen year old mouthy son is a different story, when he saw i actually drool more than the dog, he became missing in action quite often. it is very hard to discipline without a voice. i have totype it. i miss yelling at him. i m convinced though that there is a certain freedom in knowing i m dying. i enjoy all your posts and shelly, through every stage of this disease, the human spirit finds a reason to go on. love and prayers to all of you, dar in ohio.
 

rcharlton

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TBear - your story about setting your wife in a life jacket so that she could go swimming really lifted my spirits. I'm still able to swim on my own now - but expect that this may no longer be possible as my ALS progresses - it's good to know their are always options - I would really miss swimming in my life...

Al - I used to do a lot of scuba diving too - any thoughs about some kind of link between sucking compressed air out of an aluminum tank - or the affects of pressure generally?

As for Rilutek - I have not considered taking it yet - but I think studies suggest that its not only about extending life by a few months - but that it also eases symptoms and the progression therefore leading to a better quality of life - I'm not sure...I'm going to do more research before I consider taking it...
 

TBear

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Dar:
In the brief time that you have been posting, I can see that you are definitely going to crack me up on a regular basis. It is understandable that you'd have an aversion to wine after drinking the Boone's Farm, I've been at the bad end of the apple wine and the mountain berry stuff as well. Although I'm sure that there will be some objection as to whether it's actually wine or not.
Our dog (golden retriever) used to sit with Mary and get in the way of anyone who got close to her that she didn't recognize. Of course her tail was run over a few times as well.
No 16 year old sons around but we had teenaged daughters (teenagers are purportedly God's way of getting back at us for having fun with sex). Mary used a dynavox to communicate (yell) It's been over 4 years since we heard it and it's still a conversation piece. My kids are all at University now and when they yell at each other (as girls do) they do it in the Dynavox voice!
Richard; my wife and I met at swimming lessons when we were 14 and it was a common activity that we shared for for 36 years. ALS is a tragedy, but what would have made it worse would have been to lose that capability to get to the water whenever we could. We ended up buying the family cottage in Muskoka from the siblings... it was the best non-discressionary use of inadequet funds that I could ever have imagined.
Good Luck

T.
 

leslhart

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Hi all,
I love to hear ways in which pals creatively find ways to overcome the restrictions of this disease to continue doing the things they love. Its very easy to sit back and feel sorry for yourself. In my case thats usually when my family steps in and says "what do you mean..you can't?" Sometimes everyone needs a good kick in the butt. We've always been avid campers, however, having to be on the bipap, I thought those days were over. Well, between my wife and my dad and a trip to Canadian Tire to purchase a power inverter, we were sittin' around the fire on the Oregon coast. It was great. Nothing beats happy hour at the campsite!
As for Rilutek, I've been on it for 5 years now, with no side effects (so far). My insurance covers the cost, and it is the only medication I take. I was always confused by the "extends life by 3 months" thing. With every case of ALS so different, from some surviving only six months to some surviving for 20-30 or more years. We have people in their 20's to people in their 80's, so I'm not sure how they come up with that number, averages I guess. I do know one thing, if my insurance didn't cover the costs, I wouldn't be on it. I would take the money and see that doctor in China ......just kidding of course!
If you can't do the things you used to, get someone to do them for you and point out the spots they missed! Its almost as much fun.(kidding again)
 

TBear

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... quick question Les... how do you drink wine and be on the Bipap machine at the same time? You must alternate... or ?

Cheers

T.
 
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