Update:

[awieleba]

Steve and Micheline,

I am sorry for the diagnosed. There is not alot one can say at this moment, words can not convey, express, or console at this time. But, you are lucky to have the love for each other that you have. I am sure that you are treasuring each and every day and that is all you can do.

I will pray a prayer for the peace that surpasses all understanding for your family.

april

 

[lydia]

Steve and Micheline,

I am so sorry to hear that you had confirmation of this diagnosis. I hope you can continue to find laughter; I know in our family we laugh at the worst of times; some kind of defense mechanism I am sure. If you were able to have a few laughs at the doctor's then I suspect you will...a good laugh does so much for the spirit (as does a good cry). My thoughts are with all of you.

Lydia

 

[sdsyd]

Steve and Micheline,

I am also sad to hear the Dx was confirmed,and wish you the best as you continue to fight.fight,fight.

Love,
Cindy

 

[Zaphoon]

Steve & Micheline,

I'm sure the news of the diagnosed is more than frustrating but we're all pulling for you here! At least the anxiety of not knowing is over, if there is any comfort in that.

For what its worth, I like the avatars you both have.

Zaphoon

 

[crystalkk]

Steve and Micheline,

I am so sorry about your diagnosed, we are here for you.

 

[vmd]

We are here for you. I will keep you in my prayers.

 

[patricia1]

Hi All
Go to Iplex For Als
Then Scroll Down To Iplex For Als And Burn Victums
And Sign The Petition For Iplex For Als

We Need To Get It Here Asap

Pat

 

[SteveS]

Thanks for the show of support and prayers and well wishes. We (and I will probably always say "we" as in our family because even though my children and I don't have the disease we are all going through it as a family), have been now registered with the ALS society and snooping through the loan closet for anything that will assist Mich and her struggle to remain as independent as long as possible. We have an excellent occupational therapist locally that will liaison with the one from GF Strong Clinic. Physiotherapy will start soon and we have even organized home care support starting next week for 1-1.5 hrs a day in the morning. I must say all these people have come together and rather quickly now that we have a diagnosed. I worry so much when I am at work and she is here for a few hrs alone before the kids come home from school. We are hoping to get a motorized wheelchair so Mich and our daughter can go downtown and do some Christmas shopping since she has only really been out of the house for Dr's appointments since May. Some excellent mother daughter bonding time not to mention it's SHOPPING!...heh. We are still waiting for approval for the prescription for Rilutek but should hear first part of next week. Just to complete our week my dad who is 72, the 2nd youngest of 18 children (15 have died due to heart attack and strokes) is in the hospital due to a kind of a stroke. Had a triple bypass last year at this time and due to his high blood pressure had a few bleeders burst in his head. He went in for his second surgery last night due to some complications and I am off to hang with him in ICU until security comes and removes me. Anyway, as far as Micheline goes they say a journey of a thousand miles begins with a first step. We have taken that step and will run as long as we can and walk when we have to walk and I am sure we will crawl when we have to but we will be there as a family. Hopefully through our experiences others will find hope, peace or at best understanding. Life is short and make sure you take the time to enjoy it and live it to it's fullest.

 

[crystalkk]

Steve,

Micheline is very lucky to have such a supporting family.
Best wishes to your father for a speedy recovery.

 

[lovelily]

Dear Micheline and Steve...I am so very sorry, to hear about this diagnoses. I will keep you both in my prayers.

 

[CindyM]

I am sorry to hear all this, Micheline & Steve. You are so right to keep each other close in your hearts. My thoughts are with you. Cindy

 

[SteveS]

Micheline started taking her Rilutek yesterday, 50mg twice a day. So far nothing to report. I don't know how long it will take before she starts to show any ill side effects. I was thinking she would feel something after her first pill but I guess it will take longer. I have asked her to diary even the slightest symptom. I am afraid of this drug and made sure I asked the Neurologist a bunch of questions regarding it when she was explaining it to us at the GF Strong clinic on our last visit. It was even the Pharmacists first time to dispense the drug and she was frantically trying to do some research on it when I went to pick up the prescription. My biggest fear is it will accelerate the progression. I almost fell over when I saw the 658.00 dollar price tag attached to the tiny bottle with 60 pills in it. Thankfully it only cost us 3 dollars the difference in what our insurance won't pay for dispensing fee's. Anyways, hopefully this will slow things down for a bit and not end up making matters worse. Only time will tell I guess.


Steve

 

[rose]

Steve, she may not have any noticeable side effects from the Rilutek, Usually its right away. I've had trouble tolerating it due to an increased feeling of weakness and digestive problems with it. I've started and stopped taking it twice now since July. She will need to have liver panel blood tests run on a monthly basis.

Don't get too high of hopes to notice any difference. Rilutek generally does not help anyone actually "feel" better. there are exceptions. Jennifer51 saw an immediate improvement. Although it has been shown to extend life for a few months, it has not been proven to slow progression.

I think it also helps psychologically to take it, just because that way we feel we're doing something to fight the disease.

 

[SteveS]

Thanks rose. For me I am worried that it will speed up the process. She seems to have leveled out over the last few weeks possibly months. The first 6 months things progressed rather rapidly, but that was of course 6 months after we started to notice things so who knows how long before that things were actually starting to happen that may have been passed off as simple fatigue etc. For her the legs are history now and I want her to be able to hold on to the upper body strength she has as long as possible. The Neuro and team at the ALS clinic are very encouraged by just how strong she is from the waist up. The thought of trying something that is basically experimental that could end up doing more harm than good in the long run has me wondering if it is worth it. My whole reason for getting up every morning is for my wife and my family. I have come to terms with the present, it is the future that has me scared and cant possibly imagine being without her. She claims I am her rock, she has been my rock, my inspiration. We have been to hell and back in our 17yrs together and the only thing that has remained constant is her standing behind me when the proverbial poop has hit the fan. Now it is my turn to step up to the plate and live up to the example she has set for me to follow.

 

[Al]

Hi Steve. Just a bit curious as to where you got the information about Rilutek speeding up progression? Everything I've read says it slows it, not a lot, but better than nothing especially if taken in the early stages.

AL.