Living With MS

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

Thursday, March 06, 2008



My Tysabri Diary...

Hi everyone, I hope you are all doing well. I've been superduper busy lately, so I'll try to bring you all up to date a little bit with my activities (boring, huh?).

I received an e-mail from a Dr. Schwartz at Healthmeida, Inc., which is a behavioral science company hired by Biogen to create additional patient support services for Tysabri patients. In that regard, they sent me a questionnaire about Tysabri to complete and return to them (Healthmedia), and this was the survey (it was completely anonymous and did not request any personal information):

1. Use the scale below to rate your level of agreement with the following statements. 0 = Strongly Disagree 1 2 3 4 5 = Strongly Agree

It is easy to arrange my schedule to get my monthly infusion.
I am satisfied with the infusion site and staff I visit for my monthly infusion.

Prior to starting Tysabri, I had been feeling sad and not very hopeful about my future.
In the past month, I have been feeling sad and not very hopeful about my future.
Taking Tysabri gives me hope for a fuller, healthier life.
The risks associated with Tysabri are outweighed by the benefits.
I am comfortable talking to my doctor and nurses about managing my condition.
I am concerned about my ability to pay for Tysabri.
It's important to me to continue using Tysabri.
I am concerned about the potential short-term side effects from Tysabri treatments. (Examples: headache, infusion reaction, fatigue)
I believe Tysabri will be effective in treating my MS.
In taking Tysabri, I anticipate that my MS will go into remission.
In taking Tysabri, I anticipate that my symptoms related to MS will lessen.

In taking Tysabri, I anticipate that my quality of life will improve.

In taking Tysabri, I anticipate that I will be able to keep my MS under control.

2. How satisfied are you with the support you get from your family and friends? Very satisfied Satisfied Somewhat satisfied Not very satisfied Not at all satisfied

3. In general, how do you set goals? Select one.
I set my sights on achieving a huge goal but sometimes become overwhelmed.
I can set manageable goals and know what I need to do to meet them.
I usually don't set a goal and just try to do what I think I should be doing.

4. MS can have an impact on physical as well as mental aspects of functioning. Which of the following best describes that impact on your abilities? Select all that apply.
I have little to no limitations with daily functions.
I am limited in the amount and/or type of work I can do at work.
I am limited with my activities outside the home (ex. shopping).

I am limited with taking care of myself (ex. dressing, bathing).

5. How does this (the above) compare to you before taking Tysabri?
I had more limitations prior to taking Tysabri
I had the same limitations prior to taking Tysabri
I had fewer limitations prior to taking Tysabri

6. Prior to taking Tysabri, how often did you feel stressed? Never Almost never Sometimes Fairly often Very often

7. In the last month, how often have you felt stressed? Never Almost never Sometimes Fairly often Very often

8. Please choose the topics you are most interested in related to MS and Tysabri. Select all that apply.
Side effects
Lifestyle information (nutrition, exercise)
Social support
Stress
Depression
Cognitive function (memory loss, ability to think)
Pacing (Spreading out of activities to keep from doing too much)
How to work with your doctor
Stories from others using Tysabri

Additional information on Tysabri
Information on PML (Progressive multifocal leukoencephalopathy)
Other suggestions (30 character limit)

9. Gender: Male Female

10. Please select your age range: Under 18 18-30 31-45 46-60 61-75 Over 75

I found this questionnaire very interesting... so I contacted the Director of Marketing for Tysabri at Biogen to make sure that they did indeed hire Healthmedia, Inc., or if this was being passed around by one of Tysabri's competitors. I was assured that this was definitely a Biogen Tysabri survey, so I completed and submitted same to Healthmedia. Those of you reading my blog who are currently on Tysabri therapy, and did not receive this questionnaire, I would highly suggest that you contact Dr. Steve Schwartz at the following address and inquire where your Tysabri questionnaire is (I would also suggest that you reference the "Tysabri Survey" in your e-mail to them):

survey@healthmedia.com

The Director of Tysabri Marketing at Biogen also advised me that the Tysabri.com website will soon be updated to provide a more balanced view of Tysabri, and also have "Patient Stories" on there as well... Wooohooo! It's about time and I can hardly wait for them to update the website! As soon as I know the website has been updated, I'll let you all know as well. :)

I have also been answering quite a few Tysabri e-mails, mostly questions from patients that wish to start Tysabri... responding to "over-sensationalistic" media reports, and I was personally invited to join a new MS forum in the UK where the MS community is just starting to finally understand the benefits of Tysabri ( that forum just went online today!).

If any other MS patients would like to join this forum, you can go to: http://www.cre8buzz.com/multiple_sclerosis and click on "Sign Up" on the top bar. Make sure and choose "Multiple Sclerosis" as your Community from the drop down menu, it's 7th down from the top. Once in you can personalize you page. So far, I have received a very warm welcome and you probably will too. :)

Oh-I almost forgot, lastly, I was offered and accepted being made co-owner of an online MS Support Group (I got a snazzy new title for my volunteer work there-whoopie! LOL).

All of the above activities are in addition to my visiting the different MS blogs/forums online and helping MS patients there, if I can, and providing accurate Tysabri information to them..So as you can see, I've been pretty busy lately (just a little-Ha!).

Take care everyone, and all my best to each of you.

(((hugs)))

Love, Lauren :)

4 Comments:

  • At 8:32 AM, Blogger Cyndee said…

    Wow Lauren, you have been busy! You must be at the computer 12 hours a day!
    But, without you the information would not be out there. I send all the people that ask me about Tysabri to your blog!
    I will go to both websites. Thanks again for spreading the good news about Tysabri. Without Tysabri I would be a different person. Because after 10-12 days after my infusion, I go sliding back to my MS systoms and Boy, what a difference!
    Keep up the good work!!!
    Cyndee

     
  • At 9:33 AM, Blogger LISA EMRICH said…

    Hi,

    I have an MS Blogger Project underway over at my place. Please visit MS Awareness, Blogging Friends, and a little Link Love to join in.

    Thanks,
    Lisa

     
  • At 1:40 PM, Blogger Lauren said…

    Awww Cyndee,

    You're so sweet girlfriend, thank you so much for the kind words. Talk to you soon...,

    All my best, Lauren :)

     
  • At 1:43 PM, Blogger Lauren said…

    Hi Lisa,

    I saw your comments on your blog, and I read your blog as well.

    Stay well, Lauren :)

     

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