Clinical Trial tele-seminar

REMINDER
Please join us tomorrow,
Wednesday, April 21st at 11:00 am
for our teleseminar on Clinical Trials

This is truly news you can use!

Call 1.877.216.1555, then enter the passcode: 981555

Is this thing on?

0 page views today.  That hurts.  I need to upgrade the content on this blog, no?

Why I walk…

Over the next month or so, we plan to post stories from our members about why they take part in our annual walkathon, ie. why they walk.  If you have a reason or story to share, please email us at sclerodermasocal@hotmail.com or post on the comments section of this page.

We want to know…

From the desk of Josephine Battyany

Josephine would like to remind the community at large to come and join us at the walkathon-

www.firstgiving.com/sccwalk

I agree with her!

Holly’s site

Holly, our esteemed Guest blogger, has a great site of her own- check it out:http://holly-kfs.blogspot.com/

Vertical Cure

Got a call from Chris Corman today regarding the details of this year’s Vertical Cure fundraiser- check it out at www.verticalcure.org

Chris is a great guy who has turned his Mom’s illness and passing into a wonderful event that affirms the human spirit while hitting the ski slopes! How awesome is that!

Guest Blogger: Scleroderma and Exercise

Hi! My name is Holly, and I am today’s Guest Blogger.

I was diagnosed with Scleroderma in May of 2007. I recall Mother’s Day that year, about 2 weeks before my formal diagnosis, with some clarity. As usual, my family had planned a really active day. We spent the morning hiking, and had a tennis league match in the afternoon. I was miserable–exhausted and in pain, and unsure of why I felt so poorly. My only redemption that day came in the form of a fabulous win in my singles tennis match. I was so tired that I knew I could not move my feet. In fact, I could barely hold the racquet! I “went for it” on every shot and somehow it worked.

Within a month I was restricted from playing tennis, and frankly I don’t know that I could anymore. I went about trying to find a form of exercise which suited my new lifestyle. At first, I tried to walk or jog and use my elliptical. I could no longer lift weights–my hands couldn’t take it. While everyone with scleroderma is very different, joint pain soon became a real problem for me. Some of these real weight bearing exercises were just too hard on my body to do regularly.

I next tried water aerobics, which is a great exercise for those with arthritis. For those of us with vasospasm, it’s important to find a nice, warm pool. The classes were upbeat and fun, and the other participants were friendly. As great as the classes were, it wasn’t my passion, so I kept searching.

Eventually, I tried horseback riding. I had been a rider as a child and found that this sport suited me well with my current limitations. I love that my weight is distributed over both legs and the saddle. I love the soft flexion of each joint, rather than hard flexion or straight joints. I realize that it’s not as beneficial in some ways as a good hard walk, but for me the benefits are many. I am able to get a good cardiovascular workout and get outside. I love to trail ride. Even in our Southern California suburb, I am able to see plenty of wildlife and natural beauty on the trails. Just yesterday I saw an Egret, a red-tailed hawk, rabbits, about a million caterpillars, and wildflowers in full bloom.  One word of warning: if you decide to try riding, make sure your horse knows to whoa without the reins.  It’s not easy to hold the reins and I often drop them, but my horse is well-trained and forgiving!

When I exercise, my day is just better.  I feel more energetic and happier.  I know that I am doing what I can to keep my heart and lungs active.  I do have scleroderma-related lung disease and my lung function has been falling, but I hope that by staying active I will be able to stay stronger and be a better candidate for treatment.

I know that I am not in great shape–I am not the athlete I once was.  But, I’m trying, and that makes me feel better physically and mentally.  I’m really curious to learn what other patients with scleroderma are doing to improve or maintain their fitness–or, like me, to try to slow the erosion of their fitness levels.  Each of us has such different levels of disability from scleroderma, that I am sure our fitness regimes vary widely.  However, we may be able to inspire and help each other by posting tips on how to stay fit with this disease.  For those with minimal lung or skin involvement, a vigorous routine may be possible.  For those whose disease has created profound disability with contractures, gentle stretching may be all that is possible.

The Scleroderma Foundation has a great post on exercise with tips and suggestions which might interest you.  Check this page for more information: http://www.scleroderma.org/medical/coping_articles/Bradenstein_1999.shtm

Please post your comments on scleroderma and exercise.  I’d love to learn from you!

Advocacy Update

This from a recent article I wrote for the Scleroderma Foundation “Direct Connection”:

Attention ADVOCATES!
We Need Your HELP to Push H.R. 2408 Through Congress
Dear Members,

Over the past year, many of you have seen repeated mentions of the Scleroderma Research and Awareness Act (H.R. 2408). If passed this bill will lead to an incredible increase in scleroderma research at the National Institutes of Health. Millions of new dollars will flow to our doctors and researchers at a critical time when recent advances are giving new hope to people with scleroderma and the families that love them.
As we enter into the final phase, we need YOUR HELP to push this bill through Congress. To date, we have over 80 cosponsors, but we still need 20 more to reach our goal of 100.

NOW is the time to contact your Congressperson and ask for a meeting to request their support of scleroderma research. A committee has been formed to guide you through the process of setting up and executing a meeting. Please take the first step and e-mail advocacy@scleroderma.org to get started. With health care reform coming to a close, Congress will soon act on the Scleroderma Bill and we need to help them make it a priority.

If you don’t have time to meet with your representative, sending a letter is the next best thing. We can help you write the letter, but we need you to take the first step.
We are almost there, and together WE CAN DO IT! E-mail advocacy@scleroderma.org today. Now is the time to let your voice be heard!

Respectfully,
Brian R. Adams
National Advocacy Chair
Scleroderma Foundation

Guest Bloggers

I will be inviting some other folks to post to this blog to better build the community. If you would like to blog for us, let us know by leaving a comment.

Useful Book

This might be useful for scleroderma patients:
Need to know about health and disability insurance, Social Security disability, employment discrimination, family and medical leave, educational equity, housing, and resource location?

Order your copy of the 2010 Edition of Know Your Rights: A Handbook for Patients with Chronic Illness, available today!

Check it out here: http://www.advocacyforpatients.org/merchandise.php.