10 who has gone through specific training in movement disorders or behavioral / cognitive neurology. Rehabilitation therapists( physical, occupational, and speech therapists) and clinical social workers also play important roles in the care of PSP. You may also benefit from adding other specialists to your team as symptoms and needs arise. These may include a urologist, sleep specialist, neuro-ophthalmologist, and palliative care specialist. Taking care of your emotional health, whether as a person diagnosed with PSP or as a carepartner, 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 you have providers that you have chemistry with and that you trust, and for you to know that you have the right and ability to change your providers if needed.
Completing health care advance directives is an excellent tool for sharing your wishes regarding care with your support team. Health care advance directives address topics such as how aggressive your medical care should be( for example, whether you would want a feeding tube or a machine for breathing, if the need arose) and how you define quality of life. These directives should be completed with your family and your doctor and should be reviewed at least annually in case your wishes change.
Many people living with PSP consider and explore professional care services, such as in-home care, adult day care, or long-term care, depending on their care needs and situation. These services can provide additional layers of support, including companionship or hands-on help for the person with PSP and assistance and respite for the family.
Additionally, there can be great value in connecting with other people affected by the same diagnosis as you and your family, through support groups or peer supporters. It can feel validating and uplifting to hear the experiences and insights on how others adjust to life with PSP. You can exchange helpful tips on ways to cope and adapt physically and psychologically with the diagnosis. CurePSP offers a variety of support groups for people affected by PSP. There are also many more for atypical parkinsonism( which can include PSP and other diseases, such as corticobasal degeneration and multiple system atrophy) in the United States and other countries. Visit www. psp. org / ineedsupport / supportgroups for a list of regional support groups as well as virtual, national and international support groups facilitated by or in collaboration with CurePSP. Additionally, many local Parkinson’ s disease or frontotemporal dementia support groups welcome members with PSP. If you may be interested in starting your own PSP support group, contact CurePSP to learn more and for help in getting started. Additionally, CurePSP offers a peer support network, family conferences, and educational webinars where you can learn about PSP and connect to the community.
We know that a diagnosis of PSP can bring up many emotions, changes, and considerations. No matter how you find support, please remember that you do not have to navigate the PSP journey alone.
The mission of CurePSP is to raise awareness, build community, improve care, and find a cure for PSP, CBD, and MSA. Please contact CurePSP for additional information and resources: www. curepsp. org info @ curepsp. org 1-800-457-4777