Corticobasal degeneration (CBD) is a rare condition that causes the patient’s brain to become foggy and trigger the loss of basic human abilities such as speech, movement and swallowing. Currently, there is no cure for it, and little research is being done because of its rarity.
Anne Docter, a resilient 63-year-old lady, was diagnosed with CBD at the age of 62. She struggled a lot with it, and her life changed drastically and for the worse.
“Until recently, my life was very full. I did yoga and I rode my bicycle and I sewed and I knit. I did a lot of things and I cannot do any of them now.” All these restrictions on her life made her very upset “especially because [she is] dizzy and anxious all the time” due to the disease.
Anne feels that currently, nothing really helps her with her struggles. “[Anxiety] is always there, and I am trying to work with a therapist who gives me drugs but the drugs are not strong enough and they don’t work. I don’t know.”
Anne shares her valuable point of view of the healthcare system. She thinks that the biggest problem within the system is the lack of communication between doctors and patients. Her very first neurologist did not even give her a diagnosis: “I am very disappointed that the people in North Carolina did not find it, and I think that they could have found it and given it a name, but they did not.” On the flip side, she was happy that the people she met later “could diagnose it, and they found it”. She felt better knowing that the anxiety and impairment of speech were caused by the disease.
However, it was very frustrating for Anne that her questions were not answered. Her first neurologist “could not answer any questions”, and Anne thinks that “she did not want to”. “Maybe it was a very difficult disease to diagnose. I don’t know, but she never gave me an answer.” Even for her second doctor, she still felt that he was keeping her in the dark about information related to her disease: “I’m sort of lying in the dark with the doctor.”
Another problem that Anne faced was the length of time she waited for her appointments:
“And I waited a long time for the appointments, about 3 months.” When she was at the appointment with her first doctor, the doctor barely spent any time with her before handing Anne off to her assistants “all three times [she] went in”. “And her underlings, [...] the people she was supposedly training, would take over and ask me all the questions.”
Something that really helped Anne with her condition was joining a support group, which is especially helpful for people with rare diseases. However, support groups are hard to find, especially one that makes you feel comfortable. Anne’s first experience with support groups was not that great. It made her depressed, and she did not go back. Thankfully, she eventually found one that makes her feel relaxed and enjoyable to be around. By sharing her experiences with others in the group and knowing others who share similar experiences, she felt less distressed: “we talked about our issues and made me feel better. [...] You just feel better about everything. If you know it’s been happened to other people.” Similar to her suggestions to doctors, her advice for support groups is that “they should share [the information] more because [she] asked a question - what can I hope for this disease - and no one knows. But I think they do know, but they don’t want to tell me”.
Regarding improvements that could be made in the healthcare system, Anne offers her view: “If [healthcare professionals] were more communicative, and give us more stuff that they know that we should know that we don’t.” “If the doctors said more what they know, it would be better.” Although her current doctor “is good [and] did a lot of tests, and he discovered that [she] had the issue in one of the tests”, as she says, “I would like to know as many details as I could about each disease, especially ones that I have, especially CBD. I want to know everything that he knows about it, which I will tell him when the time comes”, which is the appointment she has been waiting for for 6 months.
Anne is a strong woman fighting hard against CBD and the anxiety it brought her. Hopefully, by listening to her story, we can realize the lack of communication of healthcare professionals with patients. Above all, it is crucial for doctors to have a solid understanding of various diseases and an open mind so that when a patient comes, they can provide the correct diagnosis and adequate information and support.
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