Stroke survivors, caregivers must ask questions and advocate for further testing, support

What fucking good will that do? Your stroke medical 'professionals' know nothing EXACT about how to get recovered or how to prevent the next one. All you get are 'hope' this works and useless guidelines.

Stroke survivors, caregivers must ask questions and advocate for further testing, support

Key takeaways:

• Recurrent strokes are common and many stroke patients do not receive adequate referrals.
• Patient and caregiver support is a vital component of stroke care.

Approximately one in four stroke survivors will experience a second stroke within 5 years, according to data from the American Stroke Association, yet research shows many patients still do not receive adequate follow-up and support.

In a targeted survey released by patient advocacy group United Stroke Alliance, with support from Medtronic, 80% of stroke survivors and 90% of caregivers reported concern about risk for a second stroke; however, data showed 6% of patients were prescribed an insertable cardiac monitor, which can detect abnormal heart rhythms such as atrial fibrillation. Nearly half of respondents reported receiving no heart monitoring at all.

Healio spoke with Marylee Nunley, co-founder of the United Stroke Alliance and founder of Retreat & Refresh Stroke Camp, about the survey data and what it means for patients, the importance of long-term monitoring after a stroke, and where to find resources and support for stroke survivors and their caregivers. Nunley’s spouse is a stroke survivor.

Healio: Why was there a need for this type of survey?

Nunley: Several things happened to lead us to this point. I started weekend retreats for stroke survivors and their families in 2004 because I needed support, help and education after my husband’s stroke. What we learned when listening to those discussion groups with survivors and caregivers was that many people did not know the signs of stroke. Additionally, younger participants would often say, “They couldn’t find a reason for my stroke.” This was about 18 years ago, when terms like “cryptogenic stroke” were not so mainstream. We wanted to dive deeper into those issues and explore the impact AF had on this young population or people who didn’t know the cause of their stroke. It was beautiful to see the understanding in their faces, when you could give them the information that there is possibly a reason for your stroke, something you can get checked out.

That led us to be excited about this survey.

Healio: What did you learn? Did the findings surprise you?

Nunley: The survey showed that only 6% of people received an insertable cardiac monitor (ICM) after a stroke. To me, longer-term follow-up is key. Some people have a device for a short period of time, but information that indicates risk for a second stroke may not show up right away. The ICM monitors risk over the long term closely and efficiently. The procedure to receive an ICM may make a patient nervous, but the implant is small. When it comes down to this device or the possibility of another stroke, it is an easy decision.

The surprise for me was the lack of cardiac referral and follow-up — the low number of people referred to a cardiologist or an electrophysiologist after a stroke. The focus is often so much on stroke that the subcategory of “cardiac” is often overlooked. There are so many reasons why. It could be related to where the patient lives or the clinician’s lack of stroke knowledge. I find it sad. A referral can help rule out the potential for another stroke, or worse. Recurrent stroke can be prevented and can be monitored. I am in favor of the proactive approach. Let’s gather the knowledge and not bury our heads in the sand. Now, in rural areas, follow-up can be more difficult. But telemedicine can help with this.

Healio: Recent news reports have highlighted the importance of mental health after a stroke. What kind of support does a stroke survivor and their caregivers need?

Nunley: Stroke is one of the most isolating disabilities that a person can have. It is not as straightforward as other diseases. It hits you suddenly. At 2:42 on a Sunday afternoon, my life changed. There is so much you have to do for recovery, and recovery is slow and hard. It’s hard work. There is also an informal shame attached to stroke. There is embarrassment. People then turn into themselves.

For friends and family, what I have seen and heard from hundreds of people is not understanding how to handle a stroke patient. The fear of another stroke is real for many years, depending on how treatment goes. Referrals are not going to happen right away. You are in critical need for physical therapy, occupational therapy, speech therapy. The camps started because at the 2-year mark, I thought, “I can’t do this.” The progress levels off. We even offer Zoom support groups once a month. Finding a group where you can be with others and understand their fears, successes and triumphs is so important.

My husband has aphasia. I didn’t understand the emotional outbursts those first 3 months after his stroke. It’s about being together in a support group, understanding what is “normal” and encouraging people to get further assistance, understanding and care.

Healio: From your personal experience as a caregiver, what should patients and caregivers be asking their health care provider?

Nunley: From my nonmedical view, ask the questions. We are afraid to ask questions and perhaps put the physicians on a pedestal. And, of course, physicians should be on a pedestal. But also, ask: “Could we have some further testing to be sure we are not at higher risk for stroke than normal?” Say: “I read an article or heard about a link with AF and stroke — is there a way to get some further information?” Go in with an open mind and an ability to listen, but also ask those questions. This is a big deal; it is stressful and our lives are upside down. Knowledge is power. We need to take back our power.

References:

• Retreat & Refresh Stroke Camp. Available at: unitedstrokealliance.org/our-programs/stroke-camp. Accessed May 24, 2023.
• United Stroke Alliance. Available at: unitedstrokealliance.org/. Accessed May 24, 2023.

For more information:

Marylee Nunley can be reached at info@unitedstrokealliance.org.