MS Can't Keep Kaju AZ Student Katie Crowder Down!

My Journey with Multiple Sclerosis By Katie Crowder

In the summer of 2004 my left hand started to tingle. You know that feeling when you sleep on your arm funny and it “falls asleep”. But the tingle never went away. Soon it traveled up my arm and eventually the tingle also started in my toes and traveled up my leg. Within weeks I saw my primary care doctor, a hand specialist and finally a neurologist. After many tests the diagnosis came back. I had Multiple Sclerosis (MS). I didn’t even know what MS was. All I could think of was that Jerry Lewis telethon on TV, but that wasn’t MS at all. (For more detailed information about Multiple Sclerosis please visit www.nmss.org.)

When the doctor came in to give the diagnosis it went something like this. Tyler and I sat on the edge of our seats with anticipation and anxiety. The doctor flipped through my chart looking for the test results from an MRI and spinal tap. He couldn’t find them. He walked out of the room. I remember sitting there thinking, ‘Please just get this over with’. When the doctor finally returned, he looked at the results and said, “Okay, you have MS now let’s get you on some medicine”. I kid you not. No sympathy, no concern, no hope for the future, nothing. It was like I had a cold or something. Needless to say, I switched doctors fast. Luckily the new doctor, Dr. Pamela Vincent offered compassion and hope. She told me that my case was caught very early and was mild. Although, the diagnosis was devastating we were grateful it was caught so early.

Dr. Vincent told us we needed to go home and do a lot of research and then make an educated decision about which medicine to go with. At the time there were 4 “disease-modifying” treatments or medications, all given by injection. After much thought and anguish we decided to go with a medicine called Rebif. It had a little bit better track record than its counterparts, however the side effects were expected to be less than favorable. About this time the tingling sensation in my hand/arm and feet had subsided. I was able to be on Rebif for about 20 months before I stopped to get pregnant.

In April 2006, I was blessed to get pregnant. During pregnancy your immune system is suppressed and so MS tends to go into remission. Luke was born in January 2007. Typically about 6 months after giving birth you have a flare up. Therefore, it was necessary to be back on medicine within 6 months after giving birth. However, I had developed antibodies to Rebif and I could no longer be on that medication (as well as 2 of the other 4). That left me with only one of the “disease-modifying” treatment options, Copaxone. In August 2007 I started the Copaxone, which was an injection I gave to myself everyday.

In October 2007, I had a flare up. My right arm and right leg started to tingle. The right side of my face started having some sensitivity and my neck had a constant itch. Again, in December my arm started to tingle. Therefore my new doctor, Dr. Barry Hendin, put me on a steroid treatment for 5 days. While discussing these flare ups with Dr. Hendin he brought up the possibility of switching to a newer medicine known as Tysabri. He felt like it was an aggressive move to put me on the Tysabri. However, he said something that struck both Tyler and I. He said that when he looks at me (a 28 year old mother of 3 that is generally healthy) he sees what I will be in 10 or 15 years. And he stated, he wanted to see me walking without a cane or walker. (According to the National Multiple Sclerosis Society (NMSS), “Statistics suggest that 2 out of 3 people with MS remain able to walk over their lifetime, though many of them will need a cane or other assistive device. Some will choose to use a scooter or wheelchair to conserve energy. Others will require a wheelchair to maintain mobility. The “disease-modifying” treatments mentioned earlier, and in use only since the 1990s, may favorably alter this projection.”)

Dr. Hendin said what we do now affects you very significantly in the future. He said I could continue on the Copaxone and hope it is working, but if we wait and damage occurs during that time then it could negatively affect my future. Tysabri is a relatively new drug with a much higher success rate than the other 4 medicines, but with more severe side effects. Two years previous Tysabri was pulled from the market because 2 people died while on the medication from a rare brain infection. It is considered a last resort medicine. It was reintroduced to the market and administered only when people follow strict guidelines. Tyler and I decided Tysabri was the right choice for me and I have been on this medicine for the past 8 months. I have had little to no symptoms in the last 8 months. Last week I had an MRI and I am thrilled to report that there has been no progression in the last year!!!

During the first 3 years since I was diagnosed I suffered minimal symptoms. However, I suffered fatigue almost daily. Fatigue is the number 1 symptom of MS. Exercise is one of many things that can be done to help combat fatigue. The NMSS states, “A study published by researchers at the University of Utah in 1996 was the first to demonstrate clearly the benefits of exercise for people with MS. Those patients who participated in an aerobic exercise program had better cardiovascular fitness, improved strength, better bladder and bowel function, less fatigue and depression, a more positive attitude, and increased participation in social activities.” Although I don’t experience many of these problems, I may in the future. So in order to help keep this disease at bay and do everything in my power to keep it from progressing, I’ve been searching for the right exercise program for myself. I’ve tried walking, yoga, step aerobics and weight lifting. I always felt better when I exercised, but I never felt like my body was getting stronger or healthier.

In the fall of 2005, I had the opportunity to attend a women’s self-defense seminar. This was my first experience with martial arts. I loved it! It was that initial experience that got me interested and eventually brought me to train at Kajukenbo AZ. And it has been one of the best decisions I’ve ever made in my life. I have been training since January 2008 and couldn’t be happier. In the beginning I did everything half-heartedly for fear of overdoing it and having increased fatigue. However, in the months since then my body has gained so much muscle and strength. My endurance has increased significantly. Martial arts have so many benefits for MS. It truly does all those things stated above: it helps with fatigue, spasticity, balance and gait problems and even memory. This is the best exercise program I have ever been apart of and the most committed I’ve ever been to exercise. That is why I am so excited to team up with Sifu, Simou and the Kajukenbo family in raising money for the MS Walk on November 8th, 2008.

The reason I share my story with you is to show you just how blessed I have been because of the NMSS. The NMSS, founded in 1946, is a voluntary health agency dedicated to ending the devastating effects of MS through providing programs and services to individuals and families living with MS and generating and funding research into the cause and cure of multiple sclerosis. With 62 Chapters across the country, the National MS Society is the leading source of unbiased information on multiple sclerosis and the largest private funder of MS research in the world.

Fifteen years ago, there were no medications for MS. There were only drugs that were used for symptom management. There was no medication to slow down the progression of MS. It is because of research supported by the NMSS and others that there are now many medicines that slow down and in some cases repair damage caused by MS. I have benefited from those medicines. It is my hope that I will not feel the adverse affects of MS. Many of you may know someone with MS and may think of someone in a wheelchair or walking with a cane. I don’t fit that profile and I hope I never do. This is why I am committed to this fundraiser and walk. The money raised will go directly to funding research, finding more effective medicines and potentially finding a cure for MS.

Please help by making a donation - large or small - to my personal Walk MS page. Or, why not join me on the day of the event? Become a participant or volunteer and side by side, as teammates, we can work together to raise the funds to make a difference.

You can also show your support by participating in the Kajukenbo AZ sponsored fundraiser to benefit the MS Walk. It will be held October 18th at 10am. It will include a FREE children’s defense seminar, brick breaking demo, katana demo and a silent auction. Silent auction items will be on display October 1-18 inside the dojo. Stop by and show your support. If you have a service or basket to donate please contact Simou. Winners of the silent auction will be announced on October 18th. Lunch will follow. All proceeds from the lunch will also go towards the MS Walk.

I love being a part of Kaju AZ and am grateful for how it has helped me in my fight with MS. Thank you all in advance for making a difference in my life and others with MS! As Sifu says "What goes around, comes around" and I know your generosity will be rewarded in the future!

Katie Crowder

A Post Script from Simou: We are so pleased to have Katie as a part of our Kaju AZ Team! She brings not only her two Kaju Dragons, but an awesome energy to the dojo. She is graceful, helpful and always gives her best. Since announcing our desire to help Katie raise funds for MS, we have learned that Grandmaster Forbach's sister suffered from MS as well as Linda George's (2009 black belt candidate) Father. Both died too early. Stephanie Koogler's (Black Belt Candidate) Mom Marilyn is also fighting the disease. MS touches all of us and we have a great opportunity to make a difference. Thank you for your support!