The first sign of trouble that Steve Hamburger of Westlake Village, CA, noticed was pain in his legs when he was trying to sleep. He later found out he has peripheral artery disease (PAD).
Luckily, his family already knew about PAD -- and what it would mean for them.
“I am very fortunate to have a family with a medical/athletic background,” Hamburger says. “My wife spent her career in the medical field as a manager of radiology and my older son spent a number of years being an EMT,” Hamburger says. “When I was first diagnosed my wife understood how PAD could eventually lead to me being in a wheelchair” if his PAD worsened to the point of needing amputation. He credits his wife’s support as a major factor in his lifestyle changes to help with his PAD.
But if you don’t have that kind of support, you’ll have to help your loved ones understand the condition and its impact. Here’s how.
'A Heart Attack of the Legs'
Although common, many people haven’t heard of PAD, which can make it hard for those with the disease to explain.
PAD is best likened to a “heart attack of the legs,” says Kym McNicholas, founder of the PAD nonprofit group, The Way To My Heart in California. McNichols, who doesn’t have PAD herself, says it feels like having a tourniquet tied around your legs every day.
PAD affects the circulation of the lower legs as plaque builds up to a point where blood flow is narrowed or cut off. Symptoms can include pain in your legs, cramping, and numbness. You may get ulcers on your feet or toes that won’t heal due to lack of blood flow carrying key nutrients, including oxygen to help nourish tissue.
When you walk, you start feeling a tugging in your calf, McNicholas says. “The more [you] walk, the tugging turns to cramping, which [you] may also feel in [your] thighs and buttocks,” McNicholas says. If you keep walking you may eventually feel what seems like the worst “charley horse” you’ve ever had, she says.
'Please Be Patient With Me'
Pain from PAD can be severe. It can also affect your mood. Mentally and emotionally, it can be draining to have a chronic disease.
McNicholas recommends telling loved ones this: “Please be patient with and understanding of me when I seem down or upset. It likely has nothing to do with you and is just inherent of this disease process.”
Having people who support you and understand the disease and its treatment can make a big difference in quality of life for someone with PAD.
Set Healthy Boundaries
It can help to let people know how you feel about certain questions and activities -- what you are or are not comfortable with talking about or doing.
“Patients have the right to decide what they want to share about their condition and whom they want to share it with,” Georgia psychotherapist Samuel Jones, LCSW, says. “In addition, being aware of your limitations and prioritizing how you spend your energy and time is essential to building a satisfying life while living with a chronic condition.”
Boundaries can help you emotionally and also let people know what you can or can’t do physically. Take walking, for example. It greatly improves blood flow to the legs, helping to ease pain from PAD. But you might not be able to walk as far as someone without PAD. So it’s important for loved ones to understand these limitations, says Ohio cardiologist John Phillips, MD, creator of the Save My Piggies podcast, which is dedicated to people with PAD. (“Save my piggies” is a reference to avoiding amputation.)
“When there are family gatherings or trips, patients sometimes need more time to get places and this can slow the group down,” Philips says. “If the patient has a walking partner they are more likely to walk on a regular basis, and I have found that a loved one can be a very good walking partner for these individuals.”
What to Look For
Family and friends of people with PAD take on the important role of caretakers of sorts. Checking up on the person and noticing if their activity level has changed is key to helping your loved one live with PAD. Phillips recommends looking out for changes in exercise, walking habits, and mood.
“Patients whose PAD is getting more severe often become less active and in some cases immobile. This can ultimately lead to wounds that don’t heal, worsening obesity, and ... depression,” Phillips says. “Family members and friends need to be on the lookout for significant changes in activity levels, and check on their PAD loved ones on a weekly basis.”
Showing support goes a long way for those who have been diagnosed with PAD. Going to doctor’s appointments and being engaged in the treatment process are simple ways to show your love and support.
“Instead of focusing on what I can’t do, help me to find things I can do and even that we can do together,” McNicholas says.
Hamburger has been able to live a healthy life despite having PAD. Through establishing a balanced exercise plan and taking the right medications to avoid surgery, he is comfortable with his lifestyle.
“Loved ones can help reinforce an exercise regimen, and one's maintaining a proper diet,” Hamburger says. “As well as if the PAD worsens, ensuring that you are in good vascular medical hands and avoiding amputation through all physical and medical means.”