![]() I can honestly say that I have, and will continue to have a fulfilling life with my husband of thirty-seven years and my 32-year old son. But amazingly for me, in the end each difficult decision resulted in a good outcome. It helped that I am a positive person with an “I can do this” attitude.ĭifficult decisions had to be made-giving up my career, having only one child, going on disability, having to move out of my house… It was hard. It took time, but I learned to manage my MS well. I didn’t have a choice about getting it, but I did have a choice about whether I was going to let it control me or manage my life. Truthfully, I hate MS-it’s interfering, unpredictable, and invisible in so many ways. Adjustments to changes in my life seemed constant, as my MS Blogger Buddy Nicole Lemelle would say, would become “My New Normal.” And I’m currently facing two more… Life has been good despite the challenges of living with MS while also dealing with other challenges in life that “normal” people endure. ![]() But like all newly-diagnosed people with MS, the fear of having the rest of my life ahead of me with a chronic, debilitating, progressive disease with no cure was frightening to say the least.įlash forward to present day, 35 years later. My career was taking off, I was newly married, and my husband and I were active outdoors doing things like skiing and dirt bike riding. I haven’t surrendered to MS.I was only 25 in 1980 when my MS symptoms started. “This is a contribution I make that millions of people will benefit from, but especially my own family. … I love knowing that when I see my children and grandchildren, I can say I did my best to help solve the question of MS by being a part of REAL MS,” Kolaczkowski said. “REAL MS is the first real look at MS as it personally pertains to me and others who live with this disease. Questionnaires that, at least initially, will be given study participants are: MS History, Demographics, Neuro-QoL Adult Short Forms (Quality of Life Assessment), PROMIS Global Health Scale (General Health Assessment), Self-Administered Comorbidity Questionnaire (Other Medical Conditions), and Godin Leisure-Time Exercise Questionnaire (Physical Activity Assessment). The ability to predict the disease’s likely course based on these subtypes, to provide patients and their physicians with information on likely responses to disease-modifying therapies (DMTs), and to provide evidence for intervention strategies, all represent significant advances toward the goal of being able to arrest, cure, or prevent MS. Healthcare, he added, “is moving into an era that is consumer-driven, perhaps one of the last industries to become consumer-driven. It’s appropriate, therefore, that the research that underpins healthcare becomes patient-driven … one of the goals of the iConquerMS initiative is to blur or even to strive for the extinction of that distinction.”Īmong the study’s primary goals is to accelerate research into personalized MS medicine through a classification of patients into subtypes, based on comprehensive personal characteristics combined with laboratory data. “In the big picture, what I hope is that the study enables MS research to be powered by the MS experts - people living with MS,” said Robert McBurney, chief executive officer of the patient-founded Accelerated Cure Project for MS. #Real ms iconquer ms registrationRegistration is possible by clicking on this link. All adult MS patients, 21 years or older, who register for iConquerMS are eligible to participate in the REAL MS study and invited to apply. REAL MS investigators intend to enroll thousands of people for an accurate representation of the entire MS population. The study, launched in August, uses a strategy similar to the Framingham Heart Study, a community-based health study operating continuously since 1949 that has had a profound impact on understanding of the causes of heart disease, and on how best to treat and prevent it.
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