DeFazio

DeFazio responded to my letter that I wrote about the NIH and CDMRP.  It's probably not personal, but I'm glad I got a response

Dear Ms. Wells:

 

Thank you for contacting me in support of funding the National Institute of Health (NIH).  I appreciate hearing from you and I am in complete agreement. 

 

During my entire time in Congress I have always fought for proper levels of NIH funding.  Most recently I joined Representative Markey in sending a letter to the appropriations committee insisting that the NIH be adequately funded at a level of at least $32 billion in any final budget bill this year. 

 

You can be sure that during the continuing budget debates this year I will continue to fight for the preservation of common-sense programs like NIH research.  Thanks again for writing and please keep in touch.  

 

 

Sincerely,
Rep. Peter DeFazio
Fourth District, OREGON

Biogen Idec congratulates me on 1 year of Tysabri

I get tons of Biogen Idec.  Most of them are about conference calls with other Tysabri users talking about how wonderful it is.  Actually, I only assume it's a marketing ploy as I have not actually taken the time to call in.   This email mostly talked about being on Tysabri for 1-year:

Wondering what to expect after your first year? We've got the answers you need. 

It's been a year since you started taking TYSABRI. As you reach this important milestone in your treatment journey, you may have some questions about where you are now - and what you can expect moving forward. We've got the answers you need to stay on track:

Q: I haven't had a relapse recently. Does this mean I may stop taking TYSABRI?

A: Even if it's been awhile since you've experienced a relapse, it's still important to keep taking TYSABRI as prescribed by your doctor. 

WOHOO!  Love me some drugs!

Q: What should I talk to my doctor about at my 1-year appointment? 

A: Your yearly doctor's appointment is a good time to ask any questions or concerns you may have about your MS. Think of what you'd like to discuss and take a notebook to write down key points you want to remember. It's also a good opportunity to discuss your TYSABRI treatment, so be sure to talk to your doctor about how TYSABRI is working for you. 

My next appointment isn't until June.

Q: What do I need to know about the risk of PML?

A: It's important to talk to your doctor about a rare brain infection called progressive multifocal leukoencephalopathy (PML). TYSABRI increases a patient's chances of getting PML, although it usually occurs in people with weakened immune systems. The risk of PML increases with a longer period of treatment or if you have received medicines that can weaken your immune system prior to starting TYSABRI.

As you evaluate your treatment, it is important to continue to weigh the benefits and risks. Keep in mind that only you and your doctor can make the decision that's best for you. That's why it's important to get the conversation started. 

I like being reminded that this thing may kill me.  I'll be honest, it's worth the risk because even if I do get PML because dying sounds much better than living bound to a wheelchair, unable to see, unable to talk, no appetite...and going crazy.  I feel MUCH better now.

I have one more year of Tysabri.  It's bizarre that the first 12 months have already flown by.  My relapse last year was a nightmare.