Finding Balance

Some of you may find this interesting. Found in the current issue of Brain and Life magazine: Broadcast Journalist Deborah Roberts Shares How She Manages Vertigo

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I have a history of Vestibular issues…I can relate to this article. Over the years…because I’m treated via the NHS in the UK…this specific problem has mostly been overlooked as being part and parcel of Cerebellar Ataxia.
At one point…I was referred to an Ear, Nose and Throat Specialist…but he only did a basic hearing test.
Recently…I had a letter confirming my results of Whole Genome Sequencing didn’t show a link to any genetic ataxia. It will be August 2025 before I have my next appointment with a Neurologist…and find out whether I will have further reviews…or will be ‘signed off’.
In the meantime…Vestibular issues and mobility problems are progressing rapidly.

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That’s why I have always said that very few doctors really know about Ataxia and its effects, They know the symptom ataxia but not much after that. When your eyes become affected then your balance also becomes affected. Your eyes are the windows to the world is really not understood by someone who doesn’t have an eye problem.

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:thinking: In general…GPs/familydoctors-most hospital nurses/doctors……do not know what Cerebellar Ataxia is…they just haven’t come across it. This will be the same for many Rare Diseases. With over 7500…they can’t be expected to know everything but…it’s reasonable to expect a medical professional to ‘look up’ the diagnosis of a patient in their care…if they aren’t familiar with it.

:slightly_smiling_face: Thankfully we have access to Specialist Neurologists…and the internet.