ClinicSpeak: upper limb and bulbar function

We need to focus on upper limb and bulbar function in progressive MS. #MSBlog #ClinicSpeak

"I saw a patient in clinic last week who has PPMS. He travelled a long way to see me. Tragically I had little to offer him; he had been referred to me for clinical trials. He has been using a wheelchair for several years and is gradually losing upper limb function and has started to have swallowing and speech problems. He is now unable to self-transfer from his wheelchair and needs a hoist. He has an electric wheelchair. He has lost hand function in one hand and uses the the other hand to control the wheelchair, type (single-finger) and eat. He is beginning to have choking episodes when eating and drinking and his speech has become very soft and quite. Despite these problems he has maintained a good quality of life; he has a very caring family, a large circle of friends and gets out frequently. He is desperate to slow down any further progression of his disability and would love to participate in clinical trials. It is my mission to make sure when we take our new neuroprotective treatment strategies forward we don't exclude MSers with progressive disease who are wheelchair users. Surely, protecting upper limb and bulbar function (swallowing and speech) is something worth doing? I need your help to lobby the charities, Pharma companies and the payers to make sure that if anything gets through the pipeline in this phase of the disease that we make sure it is cost-effective and MSers have access to the drug. When we last did a survey on this topic the results were clear."


Arm and bulbar function survey results from Gavin Giovannoni

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