High cost of staying alive

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LeoGreene

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I saw my neurologist this morning - my first visit back since the diagnosis. He recommended trying Copaxone, an MS drug that shows some nerve protecting qualities. I might have tried it, but the cost would be $1200 a month because it wouldn't be covered under my insurance.
 
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TRACY22

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why buy?

Not being uncaring but if the drug is in trial, unproven or just puts u in the same place a few months later (Rilutek) why bother?

PS some of the mentioned drugs are offered at reduced or free if qualified

"I asked my neurologist about marijuana and he heartily recommended it". Are u kidding? I got the ok for occational drinks but.....
 

lunarruna

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Tracy,
I'll chime in here about the marijuana. Though in our society marijuana ia quite a loaded issue (ha-ha cant resist the pun), if you look past all that to the therapeutic properties it can be very beneficial in PALS. The main benefit is that it is excellent in treating spasticity, but it also reduces saliva, stimulates appetite, and has some general analgesic properties. I have a .pdf article from a medical journal (written by 2 docs at reputable MDA clinics) that is specifically about using MJ to help treat ALS symptoms. I can email if anyone wants to send me a private message. Also, though smoking is damaging to lungs, they recommend herbal 'vaporizers' which release the active ingredients without having to have the harmful effects of smoke. I think about 11 states now allow its use for things like ALS.
Spasticity is such a hard thing to treat, it is good to have a drug like marijuana that isnt as dangerous or has as bad side effects as baclofen, for example.
Beth
 

David

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Beth, could you post the PDF article to the thread? (Go "Advanced" options when replying and click "Attachments" .. you can upload the article using that tool).
 

lunarruna

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David,
I tried to attach but it is too big (1180 KB), seems this server has pretty small size constraints (244 KB for .pdf files).....but I will sure email to individuals.
Cheers, Beth
 

joelc

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Both my MD and Neurologist recommended Marijuana and praised its medicinal value. All I have to do is ask and they will write a prescription immediately. Thankfully it is legal for medicinal purposes in Canada.

Tracy22, you said "Not being uncaring but if the drug is in trial, unproven or just puts u in the same place a few months later (Rilutek) why bother?" The way I feel about this is - if anything can prolong our life then it is worth considering. Eventually they will come up with a genuine cure and the longer we survive the better chance we have of taking advantage of new findings/discoveries. If we decline treatments that may increase our life span we might not be around when a cure is found. It would be a shame to die 1 day before a breakthrough is found.
No, I don't have my head in the clouds - but we cannot give up hope that a cure will be found. The minute we loose all hope - life is over.

I prefer to stay optomistic and take 1 day at a time. I am not dwelling on the future and the horror of what could be - Today has enough challenges of its own without adding to it. Let's pray for a miracle breakthrough!
 

TRACY22

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joelc

Glad to hear from you and that you are optimistic . I'd like to say i am but i'm more of a realist. I try to use my resources to protect my wife and kids after i'm not around.

as for the topic here my wife has good ins. , and i also have medicare. Out of pocket so far is ; loss of my work income, buying a van, $150 a month for pain and normal non-als drugs.

A realtor investor i had contact with was/is spending $15k (per mo.)as he is on a vent,24 hr nursing at home and has no insurance.
 

joelc

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TRACY22,

Thank you, but I am not sure I should be labeled as optimistic. I am very much of a realist as well and agree that there is slim, to no, chance of a cure before we die. Having said that I cannot discount the possibility of a miracle happening. I do believe in miracles. Timing of one is the real issue – I believe eventually they will discover a way to treat this disease, but who knows how long it will be – it has alluded them for 140 years now.

I am happy that you have some insurance and good medicare.

I don’t have either and life is about to get real interesting. We sold our house and moved into a cheaper one in an effort to reduce expenses. We have put everything in my wife’s name. I have also lost my income and a lot of money unloading my business because I cannot do it anymore. We just started it a few years ago – there was not time to recover startup expenses. Having your own business excludes you from any help or pensions.

I think my way of dealing with ALS is to not think ahead to all the horrible things that are coming. There is nothing we can change and all the worry in the world does not improve our situation so I chosen to not let it bother me. Or dwell on negative thoughts. I have enough challenges each day as I am still involved in the business, daily, in an effort to minimize my loss.

I am not sure how we are going to survive this financially – it is in God’s hands and we have peace about this.

If anyone has any words of wisdom please feel free to share them!

Thank you all for listening to me rant.
Joel
 

TRACY22

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joelc

you are in my prayers

miracles happen in many ways around me and i thank God not enough.

is there something, as a community here, we can find or help u with?
 

MtPockets

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Hi Joel

Sorry to hear you are in the same boat as the rest of us, but at least it seems you have a positive outlook as much as that is possible. Live every day left to the fullest and show your love to those you hold dear. We won't get another chance. I know the business and the bills can bog you down, but hey we need to focus on what is really important to us. Our families and loved ones.

Miracles do happen. THe biggest miracle is life itself, live it, enjoy it, and let worry take a break. I try to let my last days with my family be one's that they can remember with fondness, not with sadness. I know it's hard, but I think you are up to the challenge.

God Bless
Big AL
:)
 

joelc

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Tracy22 & MTPockets,

Thank you for your kind words! I appreciate what you have said.

I am a positive person and don't generally let things get to me - I have moments of frustration just like everyone. But, praise God, they are only short and infrequent. Even when I am having one of these "moments" I am not upset or bitter. God is good!

Yes, spending time with family is more important now than ever before and we are trying to do just that - once the business is totally gone we will be doing even more of this.
I also stay upbeat for my family - I want them to have happy memories of our days together - not bad ones. Thankfully this is not hard to do and does not have to be fabricated - this is the type of person I am. I am a Christian and accepted Jesus Christ as my Lord and Saviour many years ago, since that time I have had an inner peace that surpasses all understanding. God does not make mistakes so I don't worry. Death also does not concern me, I just want all my affairs in order so my wife is Ok when I am no longer here.
All our 4 kids and their spouses and children walk with the Lord as well - so I have incredible support in this way. I have been immensely blessed.
Sometimes I still try to do things in my own strength which does not work.

Miracles do happen! So let's all pray for each other and pray for a cure to be found!

May God Bless you all!
Joel
 

MtPockets

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Right on the money, AMEN AMEN

You said it all brother Joel. By the way I like that name too.
I became a Christian March 23, 1972, so I know exactly where you are coming from, sounds like something I wrote about a month ago. We are in this together until our mission is complete, then to be absent from the body is to be present with our Lord.
I'm on God's timetable. Praise God makes it a lot easier.

God Bless
Big AL
:mrgreen:
 
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