www. curepsp. org for a list of active and pending treatment trials in CBD. Keep in mind that“ observational” studies, where information is gathered but no treatment is offered, are important ways for researchers to devise diagnostic tests and to find clues to help develop future drugs. Such studies are listed alongside“ interventional” studies in clinicaltrials. org and those with CBD and their families should consider participating in one.
Additionally, you can ask your neurologist if they are offering or are aware of studies in CBD at their own center or nearby. The neurologists perhaps most likely to know of research trials in CBD are those in CurePSP’ s Centers of Care network. For more information, visit www. psp. org / ineedsupport / centers-of-care /
While it may be difficult to think or talk about, donating one’ s brain to science can be a powerful contribution to the understanding of CBD and other neurodegenerative conditions. Each donated brain is also evaluated by a trained neuropathologist to confirm that the diagnosis of CBD was correct. Setting up a brain donation is easiest if done early, ideally months or even years prior to someone’ s passing, when they can meaningfully participate in the decision. Visit www. psp. org / ineedsupport / braindonation to learn about CurePSP’ s Brain Donation Assistance Program.
What can I do to support myself and my family with this diagnosis? Building a support team is foundational to quality of care and life with CBD. 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.
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When living with a chronic and progressive diagnosis, it is important to find the right medical team to support your needs with CBD over time. CBD 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 or cognitive disorders. Clinical social workers, nurses and rehabilitation therapists( physical, occupational, pelvic and speech / swallowing therapists) also play important roles in the care of CBD. As symptoms and needs arise, you may also benefit from adding other specialists to your team, such as a urologist, neuro-ophthalmologist or palliative care specialist. Taking care of your emotional health with CBD is also a priority for both the patient and the family. It can be exceptionally beneficial to work with a mental health professional to process the experience, foster coping skills or address other emotional needs. When building your care team, it is important to have providers you like and trust, and to keep in mind that you can change your providers if needed.
Health care advance directives are excellent tools 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 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.