Last week’s column, “Uniting to Effect Positive Change,” focused on the bigger picture of advocacy. This form of advocating is about a larger movement and changing the society we live in. I have heard from many people wanting to get more involved. I cherish this because the time is now and there is still much to do.
I want to continue this theme in another way and talk about a different type of advocating. My statement for everyone is simple: We must be our own health advocate. If we don’t ask questions and learn about our own conditions, we risk missing out on the best possible care.
Before I received my diagnosis of LGMD2L, a form of limb-girdle muscular dystrophy, I was a big weightlifter and fitness nut. I remember the guru of the muscle and fitness craze was a man by the name of Joe Weider. His mantra was the “instinctive principle” of training. Simplified, this tenet meant that you listened to your body.
My LGMD2L journey started in 2006. I was still weightlifting, and one day, I decided that I would try to leg press one leg at a time. I was able to do 250 pounds with my right leg, but only 150 pounds with my left. Something wasn’t right.
The doctor I saw said I was just going through normal aging. But when I insisted, he reluctantly went ahead with an assessment, and at some point, I could see the lightbulb go on. He finally wheeled his chair up to me and got within a couple of inches of my face. He then asked me, “Ralph, is someone poisoning you?”
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I decided right then that I needed to move on. I connected with the Muscular Dystrophy Association, and went on to see a great physician in North Carolina. This led to my diagnosis a few years later, once my form of muscular dystrophy was discovered in 2010. My physician then recommended that I find a new doctor, one with a stronger knowledge of LGMD2L.
Many people are trying to understand their illness. I always recommend getting more information and asking questions. If I had stayed with my first provider, I don’t think I would have had the great treatment I’ve received.
We need to be asking questions and relating what we are feeling. Giving our doctor a complete picture helps. But even then, be ready to challenge and ask even seemingly silly questions.
I’ll relate one more example to highlight how critical this is. Last year, I discovered my pulse was very low. I had taken my blood pressure, and the machine indicated a pulse of 33. I was referred to a cardiologist and given an EKG. It turned out my pulse was 66, but I was “skipping” every other beat. Premature ventricular contractions (PVCs) are fairly innocuous, but when you are having up to 50 percent skips, it’s a problem.
I was seen by several cardiologists. All mentioned strong interventions. I was told about arrhythmia medicine, which has the potential for side effects. I was also told about cardiac ablation. During the process, I had asked a simple question, “Could the recent increase in the dosage of my beta blocker medicine (for blood pressure) have lowered my heart rate enough to have caused this?” I was told that it was possible, but this was not pursued.
The next week, I called my primary doctor and asked him if we could wean me off the beta blocker. We could substitute another medication for my blood pressure. He proceeded with this idea, and within a month, I was off the beta blocker and the PVCs had disappeared.
These examples are just that, examples, but I could tell you many more stories. I have also heard hundreds of others from people I’ve talked to.
My comments are not meant to show a lack of confidence in the medical profession. Quite the opposite, most of us who have found a great physician realize that these leaders can be life-saving. But even the best won’t always understand your body’s reactions to treatments and your responses to interventions like you do. By asking the right questions, we can be a part of the solution.
A suggestion I always make is that the night before each appointment, go through your treatment and write down two or three questions. Also, write down a couple of things you think your doctor may not understand about what you’re feeling and how your symptoms affect you.
Remember, always be your own best advocate!
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Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy
Ralph served as the executive director of the Florida Society of Clinical Oncology Foundation in 2016, helping to establish the organization and begin serving the community. Prior to that he worked for AARP, where he was a regional vice president for a decade and, prior to that, the Illinois State Director for four years.
In his capacity as the Illinois State Director, Ralph led AARP Illinois in major legislative victories between 2002 and 2006, including the Older Adult Services Act in 2004.
Before going to AARP, Ralph was executive director of the Berwyn Cicero Council on Aging. The mission of the organization is to assist adults over 60 in maintaining their independent living with the highest quality of life.
He holds BS and MA degrees in psychology from Loyola University of Chicago and worked as a licensed clinical professional counselor in Illinois for three decades. He also holds an MBA degree from Regis University in Denver, Colorado. Ralph has served on numerous boards for nonprofit organizations and in 2018 founded the LGMD2L Foundation to help look for treatments and cures for his form of muscular dystrophy.
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Ralph served as the executive director of the Florida Society of Clinical Oncology Foundation in 2016, helping to establish the organization and begin serving the community. Prior to that he worked for AARP, where he was a regional vice president for a decade and, prior to that, the Illinois State Director for four years.
In his capacity as the Illinois State Director, Ralph led AARP Illinois in major legislative victories between 2002 and 2006, including the Older Adult Services Act in 2004.
Before going to AARP, Ralph was executive director of the Berwyn Cicero Council on Aging. The mission of the organization is to assist adults over 60 in maintaining their independent living with the highest quality of life.
He holds BS and MA degrees in psychology from Loyola University of Chicago and worked as a licensed clinical professional counselor in Illinois for three decades. He also holds an MBA degree from Regis University in Denver, Colorado. Ralph has served on numerous boards for nonprofit organizations and in 2018 founded the LGMD2L Foundation to help look for treatments and cures for his form of muscular dystrophy.
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Hi Ralph, I totally agree! Those of us with a life long or chronic illness have to be our own advocate. We know our body and symptoms better than anyone else. There are great Doctors and medical providers out there, but they can help you so much more when you participate in your own healthcare. Like you when I didn’t receive the answers that I felt were appropriate for my health, I sought out to find another healthcare provider which led to my diagnosis and treatment.
Tracy, thanks for your comment. Glad you were able to be proactive. It makes a difference!
Thanks so much Ralph.
My pleasure
This is an issue I have been having recently. I fell and bruised or broke some ribs on my L side. Two days later I noticed I was having a racing heart rate (I have a watch that records my heart rate). It was going up to around 200. At first, I didn’t know what was the trigger but then was able to reproduce it. I went to Urgent Care. Then, ER doctors – EKGs were all normal but I explained it only happens when I’m walking downhill. I also explained it started with this fall and the ribs. After about 6 doctors, I emailed my cardiologist, she got me a Zio Patch for 14 days. I also had a CT scan of my chest last week. No results in but wondering why I had to wait 2 months to talk to get action and had to convince my cardiologist that it was a failure of my watch. (Phone and digital palpitation both confirmed the thready pulse.)
Sounds like you have been going through a lot. So sorry to hear this. I hope your doctors can figure out exactly what is happening but keep asking questions.
Great article Ralph! With MD there are so many other health issues that pop up out of nowhere and it is so important to have doctors you trust and can lean on but we have to do our jobs as patients and advocate.
Thank you, Leah. It’s so important!
This is a great article. My PVC’s went away when my sleep apnea was treated. Everyone is different,but speaking up, asking questions, and educating one’s self are important keys to maintaining our health. Appreciate the reminder!
Betty, so great to hear from you. Glad you are being assertive with your healthcare. Keep it up!