Q1: Tell us about your Bionews story. How did you begin contributing here as an advocate?

A: I have been writing for Bionews for eight years. They found me through my personal blog that explored my own life with ALS. A Bionews editor reached out to me directly and offered me the opportunity. At first, I thought…what am I going to write about? Today, I have written over 300 columns for Bionews. I knew that other people like me needed motivation. That is what I write about.

Q2: Where do you get your inspiration for your writing?

A: When I began writing, I found that everyone was writing a sad blog about ALS and how awful it is. I thought to myself, here is an opportunity to share what I know about wellness and motivation. I find that it’s more about the little things than the big things. People really relate to that. I try to make it educational and entertaining. It’s all about attitude.

Q3: You have a background in professional health and wellness. How are you using that today in your advocacy?

A: In 1980, I was at the beginning of the wellness movement. A hospital hired me to start a wellness department. At that time, it was fitness and strength, smoking cessation, and weight loss programs. Over time, I learned that everyone has a different level of health and they can all be helped. It’s all about lifestyle and attitude. Not everyone needs to be big and buff. You can have wellness while being in a wheelchair or any other condition as long as you follow what is best for you. Working for a hospital really helped me stay within legitimate wellness. Now, I know how to research and recognize what will be approved by a doctor and what is just a scam.

Q4: Give us some insight into your diagnosis journey.

A: I was always active. I thought I would always be running, swimming, and moving. After almost 30 years, my husband retired, and we moved to Arizona. Within two years, my feet became weak, causing me to fall often. My legs soon became weak. I was lucky to find a doctor here in Tucson who was an ALS specialist. I was diagnosed within three months. Many other patients wait for years. I wish everyone who deals with this disease was able to find an ALS doctor like I did. The good thing about early diagnosis was that I was able to start taking medication and care of myself. The bad thing was that it was obviously a huge change in my life that happened suddenly.

Q5: What else can you say about the general access to ALS doctors in the US?

A: There are ALS doctors in most of the big cities around the country. The problem is that there aren’t enough of them and most are very busy. I think my professional background and being able to navigate the hospital system helped me a lot. I knew who to call and how to push to get things done. It’s understandable, but many people don’t push and advocate for themselves in medical situations.

Q6: In one of your columns, you talk about the prophecy of the two- to five-year life expectancy after a diagnosis. What is that like and how have you been able to bring a new perspective to it?

A: I think when doctors tell you that you have two to five years to live, that’s out of date. We know ALS patients are living longer than ever before because of medication and support. When I was told how long I had to live, I was shocked. I expected to be given information about rehabilitation and recovery. Nothing was said. No offer was made for a plan to begin rehabilitation. They only told me to go home, live life, and be ready to die. In the first year, I thought about my wellness training and how I could treat myself as one of my students. I began practicing stress reduction and exercise. Even if we can move the goal one year. If we can live better, we should do it rather than becoming a self-fulfilling prophecy.

Q7: Do you think the language that is used in the doctor’s office needs to change when dealing with a disease like ALS? Especially when there seems to be a feeling of hopelessness right from the beginning.

A: A lot of doctors are afraid to say anything. Some only want to do what is necessary. Many of them just don’t want to give patients false hope. But, why not give hope? Not to say that you will be cured, but that you can improve your overall quality of life with the years you have left.

Q8: Is there anything you wish the general public knew or understood better about ALS?

A: The public thinks that there isn’t any hope. I wish they knew that ALS, as a community, is very much underfunded. I’m afraid that, if the public saw more people like me who are active, they would think that ALS is doing just fine and that we don’t need the money. In a way, I sometimes get the feeling that maybe sad photos and stories are better for awareness. At the end of the day, ALS research and treatment needs to be better funded. That’s part of why I write!

Q9: How has having that outlet through Bionews helped you with your ALS journey?

A: I have met many people who write to me and thank me for giving them motivation. I also found out that there are more people just like me out there with ALS. Bionews is a wonderful company because almost all of us are patients representing a variety of rare diseases. We are a true community. I feel cared for here. The other advocates at Bionews inspire me through their writing. Bionews helps me have a purpose every day.

If you want to read more about Dagmar’s story and her ALS journey, she picked out some of her favorite articles to share with you. You can read any of them by clicking on the links below! 

Why I named my column ‘Living Well with ALS’
https://alsnewstoday.com/columns/why-i-named-column-living-well-als/

The One Thing to Always Bring to the ALS Clinic
https://alsnewstoday.com/columns/als-clinic-the-one-thing-to-always-bring-with-you/

Are You Stuck in the ALS Waiting Room?
https://alsnewstoday.com/columns/als-are-you-stuck-waiting-room/

How to Coach the Coach: Make It a Sandwich
https://alsnewstoday.com/columns/als-coaching-patients-caregivers-make-ham-sandwich/

When ALS Becomes a Hard Act to Swallow
https://alsnewstoday.com/columns/als-hard-act-swallow-tips/