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Patient Welcome LetterA Message from ALS Patient, Scott Stafne
In the weeks that followed, my family and I rode the proverbial rollercoaster of emotions. We stumbled into the fog of current information surrounding ALS. We didn't like what we found: no effective treatments, no cure, and far more questions than answers. We started to lose hope. Despite the incredible support of family and friends, my wife and I felt very alone. Then we attended ALS 101 and discovered the ALS Therapy Development Foundation, an organization willing to be open and honest with what they've learned. They fight to save those alive today. They have a very personal stake in solving the ALS puzzle, yet they refuse to rush to judgment on potential treatments. They demand reliable data and results. Perhaps most important, through ALS TDF we connected with people that understood what we were going through. If you have been recently diagnosed with ALS, I have a very important message for you: You are not alone. There are people and organizations that want to help. Locally, we have found ALS clinics, loan closets, and support groups with dedicated experts to help me physically, and families like our own for mental and emotional support. In addition, we joined TeamTDF to help raise awareness and funding for ALS research. Our friends and family are helping us organize a variety of events to move us closer to a treatment and cure. We have also joined PatientsLikeMe, an online community of patients, doctors, and organizations that informs and empowers patients to manage their illness. Furthermore, we've consulted ALS TDF team member Mary Beth Parks, a R.N. with over 20 years of experience with ALS, for useful tips on overcoming common hurdles. All of these resources have proven invaluable as my illness has progressed. We've found taking proactive, positive action to be enormously meaningful and therapeutic. Our hope has been renewed. I would never claim to be an expert. The best approach for each person dealing with this disease is as varied as the nature of its progression. But I encourage you to dig in and learn more about your illness, as well as reach out and connect with the ALS community. If you're reading this letter, you're already on the path. If I may pass along one more piece of encouragement, given to me upon my diagnosis, it would be this: Go easy on yourself and your family. It's hard to do, but nothing about ALS is easy. So cut yourself some slack and let the shock fade a little. Learn to enjoy the here and now. You've joined a very undesirable club. But the important thing is that there is one. Consider it your extended family. And while none of us chose to become members, please know that you are most welcome. And take comfort that you are not alone. Hang in there. Keep hope alive. -- Scott Stafne Also, see |
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Hearing my doctor say I have ALS was like being whacked over the head with a 2x4. I was 32 years old, happily married, and elated by recent news that my wife was 3 weeks pregnant with our first child. I felt healthy and excited for the future. How could I possibly have a terminal illness? The word 'shock' was redefined for me that day.
A Letter From ALS Patient, Steve Lewis