There is also research being done to better understand and manage the low blood pressure challenges associated with MSA.
How can I become involved in research in MSA? Many people with MSA find that participation in research is a meaningful way to help doctors and scientists understand, diagnose, and treat MSA. Participants in clinical trials may not only benefit from a new treatment that is not generally available; in addition, they often receive detailed care and attention that is not part of the routine, even at excellent medical centers. Equally important research is being done to look for genetic and environmental contributors to the cause of MSA, as well as research on tests that can lead to more accurate diagnosis and improved care of MSA.
In the United States, clinical trials are listed on a website maintained by the National Institutes of Health, www. clinicaltrials. gov. You simply enter“ multiple system atrophy” into the search box. You can also visit www. curepsp. org for a list of active and pending treatment trials in MSA. Additionally, you can ask your neurologist if they are offering or are aware of studies in MSA.
Donating your brain to science can be a powerful contribution to the understanding of MSA and other neurodegenerative conditions. Each donated brain is also evaluated by a trained neuropathologist to confirm that the diagnosis of MSA was correct. Setting up brain donation needs to occur early, ideally months or even years prior to someone passing away. Visit www. psp. org / ineedsupport / braindonation to learn about CurePSP’ s brain donation program.
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What can I do to support myself and my family with this diagnosis? Building a support team around you is foundational to quality of care and life with MSA. Your support team may consist of your partner, family, friends, support group, religious community, healthcare team, professional care, and others— people who care about you and show up for you.
When living with a chronic and progressive diagnosis, it is important to find the right medical team to support your needs with MSA over time. MSA needs to be managed by a neurologist. This could be a general neurologist, but, if available in your area, you may also choose to work with a neurologist who has gone through specific training in movement disorders or autonomics. Rehabilitation therapists( physical, occupational, pelvic, and speech therapists) and clinical social workers also play important roles in the care of MSA. As symptoms and needs arise, you may also benefit from adding other specialists to your team, such as a urologist, neuroophthalmologist, and palliative care physician. Taking care of your emotional health with MSA is also a priority, and working with a mental health professional to process the experience, foster coping skills, or address other emotional needs can be exceptionally beneficial. When building your care team, it is important that you have providers you have chemistry with and that you trust, and for you to know you have the right and the ability to change your providers if needed.