By Dr. Larry Kellerman, with help from Lila Brady and Courtney Cupples at Biohaven Pharmaceuticals
Those who have already been on a multiple system atrophy (MSA) journey are very aware of the many issues facing patients and care partners. I found many times anecdotal stories mirrored what my wife and I were going through; I found other anecdotal stories had no link to our personal experiences. When it came to research articles, the focus on a specific problem helped me better understand it and possible solutions. Both types of evidence are useful as long as you the reader use your personal filter to choose what to accept and what not to accept.
In this post we teamed up with Biohaven to present to you information from a survey designed to gather information from anonymous MSA patients and caregivers to see how the company could better help people with MSA. Using telephone interviews over a period of two months, professional researchers interviewed 17 MSA patients and three caregivers. Some advice emerged from those interviews that we thought might be helpful to other patients and caregivers on their MSA journey. The purpose of this review is not to provide any medical or health-related advice, but rather to share lifestyle tips for those affected by MSA.
A problem that is experienced by almost all MSA patients is getting into and remaining in bed. That topic came up during the course of the interviews, and patients/care partners shared their ideas for sleeping arrangements. One couple, in which the husband was the MSA patient, found that having her husband wear satin pajamas helped her move him more easily. She learned though, that pairing satin sheets with satin pajamas was too slippery!
That same couple then had a floor-to-ceiling dancing pole installed next to the bed, making it easier for the husband to pull himself up and then swing his legs to the floor. Another couple used bed rails to ensure the patient didn’t roll out. I found this solution to be quite helpful for the few months after my wife had lost the ability to get up or lie down by herself, but she was not yet bed bound. The frame of the bedrail slides under the mattress and the rail itself raises and lowers just as a regular bed rail would. It can sure help minimize worry at a crucial time in the disease progression.
For Daily Support and Emotional Support:
One focus of the Biohaven research was how MSA patients and caregivers face the need for support, both daily and emotional. Interviewees discussed the role of physical, occupational and speech therapy.
Some people with MSA found a therapy dog helpful. A therapy dog can provide both physical and emotional support. I have met two wonderful patients who have had their lives made better by a therapy dog. Those properly trained to serve MSA patients help with balance, mobility, daily needs and patients’ emotional needs.
There may be an emotional support group for those on an MSA journey. Support groups are not for everyone, but they can provide an accepting environment to connect with others who may be experiencing similar emotions. Before the pandemic, most support was provided through in-person groups and phone conversations; with the pandemic, support groups are turning to Zoom or other video platforms to hold their meetings.
One caregiver shared some information about the role technology can play in the MSA patient’s day. She gave her husband an iPad so he could keep occupied by communicating with others, playing games, watching lectures, reading newspapers and more. It is also a good place to keep a journal, using the Notes app or a similar one to record thoughts, symptoms, feelings, etc. My wife found the tablet especially useful when she lost the dexterity in her fingers. She could “slap” the large letters on the tablet’s keyboard with her thumb knuckle and write notes and emails to friends. Not only is it a communication aid, but a way to keep up on the news, watch lectures and or programs without relying on a TV. Why’s that important? More than one patient has tried to get up to get the TV remote only to fall to the side or into the TV. That’s not good for anyone believe me (Yes, I speak from personal experience!). Technology can be good.
In Case of Emergency:
Though we hope for the best, at some time during the course of the disease there may be an emergency – oftentimes more than one. It’s very important to prepare for those times when someone with MSA may need to go to the hospital or be in an ambulance. One interviewee, when asked how she and her husband prepared for emergencies, shared she made him a bracelet that says he has MSA and to “send to” the local hospital. Another responded by sharing she put together a binder of fact sheets about MSA and about the medications her husband was taking. The binder was helpful when her husband was taken to the emergency room, where the health care professionals often don’t know what MSA is. Having that information available, making sure it gets in the hands of the doctors and then ensuring they have at least scanned the document can save problems down the road.
For Autonomic Symptoms:
Of the many symptoms that may impact an MSA patient’s life during the journey most can be put into two broad categories, autonomic symptoms and ataxia. Biohaven researchers wanted to learn what patients and caregivers do to minimize their impacts and received a lot of suggestions.
One primary autonomic symptom (view autonomic nervous system information and graphic at this link) is dizziness, most often caused by low blood pressure. The practical suggestions offered by the respondents were many, including wearing compression garments, elevating the head of the bed, eating more small meals instead of three big ones, and taking lukewarm showers. These suggestions do not include medication, which may be necessary for some patients.
Patients and caregivers also shared that self-catheterizing the bladder and using a pacemaker helped them personally, and eating a high-fiber diet helped with constipation. Bladder issues, possible heart problems and constipation all point to a problem with the autonomic nervous system. Solutions like these mentioned can work. However, you should consult with your doctor when autonomic symptoms appear, persist and become more severe.
For Difficulty With Movement:
Patients and caregivers shared with Biohaven a number of techniques or therapies they’ve used, including, as noted above, physical, occupational and speech therapy. Talking to the doctor about the problems you’ve been having prior to the appointment and sharing notes about symptoms or medication issues can help the doctor determine when and what type of therapy to prescribe.
Patients talked about using canes, then walkers, then a scooter or wheelchair. They shared they engaged in limited physical activity including stretching, and light exercise such as walks which they thought helped keep them mobile longer.
All these issues can come to the forefront when traveling. Most MSA patients and caregivers want to continue their lives as best as is possible and travel is part of that. Biohaven heard from respondents how they deal with the need to “go” on long trips. Some respondents take portable urinals when on a car trip and call ahead to see if places have single-stall bathrooms. Preparing in advance can help avoid frustration.
In the quest to develop a treatment for MSA, there are some potential therapies being developed and tested by pharmaceutical companies. You may hear about a clinical trial from a friend or see a mention on a social media site. Dr. Susan Perlman, a neurologist at UCLA Health, gave a talk at our conference on October 23, 2020, touching on what people with MSA should consider as they think about clinical trials. That talk can be found at this link.
After an MSA diagnosis, both the patient and the caregiver can become stressed to the max by the many problems facing them. Biohaven wanted to learn more from some who have been on an MSA journey. We have shared some of the interviewees’ ideas and suggestions with you and hope they provide you with some additional tools in your toolbox. My grandad was a carpenter and he used to say, “The more tools in the toolbox the more likely you are to be successful.” You’ll want those tools for an MSA journey in which success means the best quality of life possible. That’s a worthy endeavor.