Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Sunday, June 17, 2007

My Tysabri Diary...Happy Father's Day and Happy 4th of July!

"You never said I'm leaving, You never said goodbye
You were gone before I knew it, And only God knew why
A million times I needed you, A million times I cried
If Love alone could have saved you, You never would have died
In Life I loved you dearly, In death I love you still
In my heart you hold a place, That no one could ever fill
It broke my heart to lose you, But you didn't go alone
For part of me went with you, The day God took you home."

"When I was:
Four years old: My daddy can do anything.
Five years old: My daddy knows a whole lot.
Six years old: My dad is smarter than your dad.
Eight years old: My dad doesn't know exactly everything.
Ten years old: In the olden days, when my dad grew up, things were sure different.
Twelve years old: Oh, well, naturally, Dad doesn't know anything about that. He is too old to remember his childhood.
Fourteen years old: Don't pay any attention to my dad. He is so old-fashioned.
Twenty-one years old: Him? My Lord, he's hopelessly out of date.
Twenty-five years old: Dad knows about it, but then he should, because he has been around so long.
Thirty years old: Maybe we should ask Dad what he thinks. After all, he's had a lot of experience.
Thirty-five years old: I'm not doing a single thing until I talk to Dad.
Forty years old: I wonder how Dad would have handled it. He was so wise.
Fifty years old: I'd give anything if Dad were here now so I could talk this over with him. Too bad I didn't appreciate how smart he was. I could have learned a lot from him."
Authors Unknown

My father died when I was very young, so I can't say a lot of wonderful things about him because I can't remember if there were a lot of wonderful things about him. I do remember a few good things, but I also remember some very sad times when he was abusive towards me, my 3 sisters and my mom.
I learned later that it was the bottle that made him so mean, but nevertheless, I forgave him.... did his alcoholism rear its ugly head due to the pressures of raising a family? Providing for us? Was it something from his own childhood that made him drink? Would he have changed if he grew older? These are questions I cannot answer... at my age now, I'm sure I'll find out the answers soon enough.

The funny thing is, growing up without a loving father in my life, made me more patient and tolerant of others' insecurities, frailities, and shortcomings (to a point). It has also made me richly appreciative of kind, good friends and the little things in life. Perhaps this was meant to be after all.... perhaps not. I don't rightly know for sure. It is what it is.

What I do know is that we need to love the ones we still have with us because we never know when they're going to be taken from us..., and that includes people that we love which might inevitably become Alzheimers patients, lost forever to the disease.

Thank God we have hope in AAB-001, currently in Phase III clinical trials... Happy Father's Day to all the loving fathers out in cyberspace - including grandfathers. You are a special breed indeed.

Love, Lauren
A very proud member of

Thursday, June 14, 2007

My Tysabri Diary...

I returned home late yesterday from my 9th Tysabri infusion...and it went pretty well all things considered. I had a slight headache after the long drive to and from the infusion center and the rush hour traffic (nothing that a couple of Ibuprofen and good night sleep didn't cure), but overall I'm feeling pretty strong.
My infusion nurse advised me that they are currently infusing approximately 15 patients with Tysabri and enrolling more weekly...their youngest being 23 years old with Progressive Relapsing MS.
He then advise me that he heard Tysabri is going to be used in Crohn's patients pretty soon also, or so he read on the Internet. I asked him if he knew how Tysabri works in Crohn's disease and he said no not really. So I gave him a quick and brief lesson in Tysabri and CD, and I advised him that Elan holds the sBLA for Tysabri in CD, not Biogen...and that Elan's scientists discovered Tysabri, not Biogen's, and that Elan owns 50% of Tysabri.
He then asked me if I ever heard of the National Multiple Sclerosis Society? (Sheeeesh) I said yes I'd heard of them and then I asked him, " guess what the National Multiple Sclerosis Society and Biogen did for MS patients in helping us get the drug back?" He said "what?"
I said "they did absolutely was Elan's investors that helped a lot of us MS patients get to Washington, DC to testify before the FDA Advisory Committee back in March 2006 in our effort to bring Tysabri back to patients that want and need it." (my testimony was presented and played via videotape due to an exacerbation I suffered in Feb. 2006, arranged for and paid for by a number of the Elan retail investors out of their own personal pockets.)
So after I finished my infusion and my one hour observation time, I obtained my next infusion date (28 days away...yaaay!).
I would like to thank each person that left me a comment offering their condolences and sympathies for the loss of my Mina. You will never know how much they meant to me at that very sad time in my mind and my heart still keep thinking she'll come to me (like she always did) if I call her name (sigh)...oh well........,
Love, Lauren
A very proud member of