The Unique Challenges of Women with Cerebral Palsy

The Unique Challenges of Women with Cerebral Palsy

Those who have cerebral palsy face a lifetime of physical challenges. These can range from rather mild to very severe, but tend to get worse as a person ages. While cerebral palsy itself doesn’t get worse – the level of brain injury a person suffers doesn’t actually progress – the symptoms can get worse over time.

While the normal difficulties of aging are often exacerbated by cerebral palsy, there are special considerations for women when it comes to their sexual and reproductive health. Issues that would normally appear at a later stage in life, such as menopause, happen much earlier than usual. The symptoms can also be much more severe than they would be for someone who doesn’t have cerebral palsy. In addition, there can be barriers to care, such as a lack of training or ability on the part of healthcare professionals to effectively treat those who have cerebral palsy, or social stigmas surrounding reproductive health.

A Facebook Group Study on Women with Cerebral Palsy

A recent study looked specifically at Facebook messages posted in a private group for women aging with cerebral palsy. According to Cerebral Palsy News Today, some clear themes emerged during the study, including:1

·        The effects of aging on the body. Those in the Facebook group pointed out that they suffered maladies in their 40s and 50s that caught them by surprise. As they aged, their conditions became worse. A decrease in mobility was one complaint, with some saying that they are falling more often than they used to and their energy levels are down.

·        How the effects of aging changed their lifestyles. Having to cut back on work and other activities, needing assistance for tasks of daily living that they used to be able to handle alone, and moving much slower in many areas of life are all complaints that surfaced in the Facebook group.

·        Problems with reproductive healthcare. The women also discussed a variety of reproductive health measures they don’t engage in, such as routine Pap smears or other screenings. They were considered too much hassle, especially for those who have difficulty with the spasms that often come with cerebral palsy. There was also concern that their healthcare professionals wouldn’t know how to properly care for someone with the condition.

When the basics of daily living become more difficult, it’s time to think about how to alleviate the pressure you’re under and mitigate safety concerns, like turning to medical alert technology. Medical alert systems are wearable button alarms that ensure that if you do fall down or suffer any sort of emergency, you can reach out and summon help with a single touch of a button.

Other Issues Faced by Aging Women with Cerebral Palsy

Cerebral palsy can cause many issues, one of which is premature aging. That speeding up of the aging process might make it seem as though cerebral palsy is getting worse when in fact, what is happening is an exacerbation of the symptoms one might expect from aging. And just as with anyone who enters their senior years with some sort of medical condition, the aging process can seem to make that condition worse – for instance, someone who has early-onset arthritis might feel as though their condition is worsening as they get older, when it’s actually just the effects of the aging body that are taking a toll.

As such, there are some issues with aging that might be much more pronounced in someone with cerebral palsy. These can include:2

·        More pain. Cerebral palsy often brings some measure of pain, and that can get worse as a person gets older. The pain most commonly occurs in the knees, hips, neck, and back.

·        New physical issues. These issues can include anything from muscle weakness to early-onset arthritis. Anything that you might expect to deal with in your later years could come much earlier.

·        Trouble walking. Those who were able to walk just fine as children might find that they have difficulties walking as they get older.

·        Trouble with eating. Motor function issues can lead to trouble with swallowing and eating, which can get worse with age, especially when combined with dental health problems.

·        Issues with dental health. Many people with cerebral palsy can’t stay still long enough for a thorough dental exam, cleaning, or needed procedure. As a result, dental health can suffer, and that only gets worse as a person get older.

·        Medication side effects. Some will require certain medications their entire life, and being on something for a very long period of time can lead to side effects that can get worse with age.

·        Fall injuries. Decreased mobility can lead to a higher risk of falls. Those with cerebral palsy tend to fall more often, which means they have a higher risk of serious injury than their peers do.  

·        Higher risk of cancer and other illnesses. When someone doesn’t get preventative medical care and screenings, there is a higher risk of cancer and other medical conditions going undiagnosed.

Many of the challenges you might face as an older woman with cerebral palsy are very good reasons to consider using a medical alert pendant, watch, or bracelet. These life-saving devices can be your safety net if you do suffer from falls or have trouble with medication side effects. Simply press the panic button alarm and reach help in seconds. And if you opt for a medical alert system with fall detection, you don’t even have to press the button – the device itself can sense a fall and get help rolling your way immediately.

Talking to Your Doctor

One of the most important aspects of healthcare is talking to your doctor. But some who have serious medical issues, such as cerebral palsy, find that they can’t get the care they need. While there are many specialists who treat cerebral palsy in children, as a person becomes older they need a different kind of care, and there aren’t many specialists who are well-versed in treating older adults with cerebral palsy.

How can you do the best to advocate for yourself when dealing with a medical system that isn’t designed to take care of your unique needs? In addition to some general tips from the National Institute on Aging, here are some ideas for talking to your doctor about specific health concerns:

·        Spread the word about your search for a doctor. It can be hard to find someone who knows how to manage your condition. When you meet with a primary care physician, point out that you’re looking for someone who can manage the problems you face – and that they are many and varied. They might have suggestions for a specialist, either someone who can take a holistic approach, or several who could work together as a team.

·        Write everything down. Make sure that you cover all the bases before you even get to the office. Write down a list of concerns and questions, as well as any major changes or stresses in your life and your medical condition. Make a list of all the medications you take, including over-the-counter or herbal remedies, as well as the dosages and how often you take them.

·        Be prepared to educate. It can be incredibly frustrating to bring someone else up to speed on a condition that you have to explain over and over to a variety of medical professionals. But keep in mind that educating them on how your unique health needs work is just as much about your own advocacy as it is about offering them something they didn’t know. If you think you might get some pushback, come prepared with information from respected medical journals.

·        Bring a friend or family member. Now is the time to enlist the help of a close friend, family member, or family caregiver. They can be an extra set of ears to catch what the doctor says, as well as someone who could write down information while you ask questions. They can also advocate for you.

·        Take all the time you need. Your needs might be very different than those of other patients in the practice. When you make an appointment, tell the staff that you have cerebral palsy and that you might need a longer appointment than usual.

·        Look elsewhere if necessary. If you are uncomfortable with your doctor’s responses to your questions and concerns, it’s time to look for help elsewhere. Yes, it can be a hassle to work through doctors until you find the one that meshes well with you, but your good health is worth the time.

For anyone aging with cerebral palsy, the use of a personal emergency response system can help provide peace of mind that if you do suffer a fall or any other accident, the medical alarm at your fingertips will summon help right away with a single button press.