Multiple Sclerosis Awareness Walk 04/14 & 04/21 2012- Sticky?

[Dayze]

Good Afternoon All,

I wanted to take an opportunity to let you know about an upcoming fundraising Walk for the Multiple Sclerosis Society on April 14 & 21, 2012.

Within the past month, my wife was diagnosed with MS. The diagnosis was completely unexpected, and a complete surprise to us. She went from having zero symptoms, to what we now know were symptoms of MS in the span of less than 12 months. Fortunately, it was diagnosed early. Most times, she cannot feel her fingers/hands, hips or feet all that great, and at times can have trouble walking due her legs feeling like they’re ‘asleep’ and ‘tingly’.

This email is certainly not meant as a walk for for her specifically, but rather people as a whole who suffer from this disease. While she is having some trouble adapting to the disease, there are people who are much, much worse off than her. Currently, there is no cure for the disease. Those with MS, can only get treatment to try to ‘halt’ the advancement of the disease. Currently, there is no medicine to relieve the physical ailments.. Additionally, as we’ve found out, medicine for this disease is incredibly expensive. While we’re fortunate enough to have insurance to cover most of the costs, there are some folks who either don’t have insurance, or minimal disability benefits to receive the treatment they need.

I’m reluctant start this thread because I’m sure in these tough economic times most families are already contribution/donating to their preferred charity or foundation. However, if you’re interested in participating in the walk, or making a donation regardless of the amount on her behalf, please take a moment to browse the MS Society’s web page below for information. (you can PM for her name if you're interested in donating)

Thanks for your time and consideration, it is appreciated.

Respectfully,

Dayze

KC Chapter of MS Society
http://www.nationalmssociety.org/chapters/ksg/msaw/index.aspx

Walk & Online Donation information. Standard donation method also listed below.
http://main.nationalmssociety.org/site/TR?fr_id=4540&pg=pfind

Walk Date / Time

April 21, 2012
Black & Veatch
Overland Park, KS
8 a.m. Check-in
10 a.m. Walk Begins

April 14, 2012
4900 Main St.
8 a.m. Check-in
10 a.m. Walk Begins

Send all check donations to:National MS Society
Mid America Chapter
7611 State Line Rd; Ste100
Kansas City, MO 64114

[Mr. Laz]

cool

[Rain Man]

Sorry to hear about your wife, Dayze. This sounds like a good cause.

I know little about that disease. A friend of mine has it, and they somehow stopped the progression of it. It affected one side of his body pretty severely, but the other side is fine. I would've assumed he'd had a stroke or something, but it was MS. Other than losing the ability to do anything athletic, he's fine and is able to work and stuff.

[Dayze]

Thanks guys. appreciated.

[chasedude]

Sorry to hear your wife is diagnosed with MS.

Just to give you a little glimmer of hope, one of my customers (I deliver meds for a pharmacy) has had MS for a few years now. She was getting bad enough to be wheelchair bound. She gets meds on a weekly basis and her husband always answers the door, she used to come to the door herself. A couple of days ago I stopped by to drop off her meds when SHE answered the door. I was completely surprised and speechless. She's on something new, wish I could remember the name of the drug, that has completely turned her around. She's walking as any healthy person does.

This new medication is very expensive but how can you put a price on your ability to get around.

I hope Mrs. Dayze finds some great meds to get her through this.

[Dayze]

Sorry to hear your wife is diagnosed with MS.

Just to give you a little glimmer of hope, one of my customers (I deliver meds for a pharmacy) has had MS for a few years now. She was getting bad enough to be wheelchair bound. She gets meds on a weekly basis and her husband always answers the door, she used to come to the door herself. A couple of days ago I stopped by to drop off her meds when SHE answered the door. I was completely surprised and speechless. She's on something new, wish I could remember the name of the drug, that has completely turned her around. She's walking as any healthy person does.

This new medication is very expensive but how can you put a price on your ability to get around.

I hope Mrs. Dayze finds some great meds to get her through this.

:thumb: Thanks man.


Yeah, she's going to be getting monthly IV treatments of a drug called Tysabri. Which, we found out can be up to $7500/month. Unreal. They'll reassess her in a year to check for the JC virus - which can pop up on an immune supressing medicine like Tysabri. JC can develop into PML....which is definitely not good. If the JC pops up, she'll switch to some sort of interval self-administered injections etc. For now though, it's Tysabri

[chasedude]

:thumb: Thanks man.


Yeah, she's going to be getting monthly IV treatments of a drug called Tysabri. Which, we found out can be up to $7500/month. Unreal. They'll reassess her in a year to check for the JC virus - which can pop up on an immune supressing medicine like Tysabri. JC can develop into PML....which is definitely not good. If the JC pops up, she'll switch to some sort of interval self-administered injections etc. For now though, it's Tysabri

She did mention a new injection she was taking that's delivered straight from the hospital. Next time I'm delivering something to her I'll have to ask her what the name of the new one she's been using that's given her, her live back.

[Coogs]

Within the past month, my wife was diagnosed with MS. The diagnosis was completely unexpected, and a complete surprise to us. She went from having zero symptoms, to what we now know were symptoms of MS in the span of less than 12 months. Fortunately, it was diagnosed early. Most times, she cannot feel her fingers/hands, hips or feet all that great, and at times can have trouble walking due her legs feeling like they’re ‘asleep’ and ‘tingly’.



My wife has MS. Mild case thankfully. If you were to meet her on the street, you would not know she had MS. She has had it for upwards of 25 years. She take a shot 3 times a week of a drug called Rebif. She also takes a drug called Ampyra to help with her walking, as she experiences the same symptoms your wife does when she walks and becomes fatigued.

If your wife is not on this drug, I would check with your doctors about the chance of getting on it. It has done wonders for my wife!

http://www.google.com/search?sourceid=navclient&ie=UTF-8&rlz=1T4SKPB_enUS364US364&q=ampyra

[Dayze]

My wife has MS. Mild case thankfully. If you were to meet her on the street, you would not know she had MS. She has had it for upwards of 25 years. She take a shot 3 times a week of a drug called Rebif. She also takes a drug called Ampyra to help with her walking, as she experiences the same symptoms your wife does when she walks and becomes fatigued.

If your wife is not on this drug, I would check with your doctors about the chance of getting on it. It has done wonders for my wife!

http://www.google.com/search?sourceid=navclient&ie=UTF-8&rlz=1T4SKPB_enUS364US364&q=ampyra

Yep; Rebif was one of the options. I'll look into that Amprya...sounds like a good option too. Thanks.

[Coogs]

Yep; Rebif was one of the options. I'll look into that Amprya...sounds like a good option too. Thanks.

Your welcome! Hope all stays well for your wife through the years as it has for mine.