[Two of our pets decided to pose for the camera yesterday - in this one Melo and Willis are discussing the wonderful care they receive!?!!?] Yesterday the post detailed some symptoms indicative of MSA that the Queen exhibits above and beyond those presented the previous day. Todays post will include some features tied to MSA patients by research that are presented in Colleen and a few that are not. Last fall this writer read Chapter 6 of the Wenning/Fanciulli book but found the vocabulary daunting. Time and additional learning has helped clarify much of the information. Hopefully this writer can help you get a handle on some of what you have heard or observed related to the MSA patient in your life. One of the words both the Queen and her husband had heard a number of times was “bulbar.” It came up in the term “pseudobulbar palsy” and was referenced when a writer described dysarthria, dysphagia, and dysphonia. Once this writer learned the bulbar region is composed of the medulla, the pons and the cerebellum (hdsa.org/research/glossary/index.html) it was easier to understand the symptoms related to that area. The text notes that a 2008 study indicated 30 – 50% of MSA patients have bulbar malfunction while only a minority of PD patients do; also, signs of bulbar dysfunction occurs within three years of disease onset. Colleen has had several episodes related to dysphagia, the symptom related to difficulty swallowing, and those have been scary. The other two – dysarthria, dysfunction in the ability to produce speech and dysphonia, impaired ability to produce sounds – are not yet an obvious problem for Colleen. Of the other “presentations” related to MSA found in Chapter 6 the only one that has had serious observable impact on the Queen is apraxia. Apraxia, which refers to problems with the ability to perform coordinated movements or manipulate objects in the absence of motor or sensory impairment, first presented as a symptom in toothbrushing. About three years ago she began noticing her struggles with toothbrushing; the difficulty is in performing the up and down and sideways motions we use to brush. Over the past three years this particular presentation has worsened to the point that she finds it easier to use both a chewing and hand motion to properly brush. Most recently she has started to need help with zipping and buttoning but that is not yet reached a tipping point. This final entry discussing the various symptoms noted in Chapter 6 of the Wenning/Fanciulli text and how they present themselves through the MSA patient residing here in New London, IA, gives you a glimpse into why this disease is called “the beast.” Each presentation described in the text is referenced and each is explained in its presentation rates in MSA as well as other neurodegenerative disorders. That MSA is presenting itself through Colleen differently than in others and some of the presentations are consistent with the research and others are less so feed directly into the beast label. From the perspective of this caregiver that aspect of the disease is what makes determining a cause and a cure so difficult and frustrates researchers and patients alike. Now for the less onerous news for this post. Tournament week has excited the Queen like no other time since the trip to Florida in December. The Fightin Illini won yesterday and she certainly helped them to that win by wearing her all-Illinois wardrobe but may need to do more if they are to challenge the #1 seed Michigan today. The number of exciting games, upsets and individual performances also got cheers from the Queen and her husband and today will be no different. By the end of today semi-final and final pairings for conference tournaments will be set. It looks like a wonderful roundball weekend. Enjoy the sunny, beautiful day if you can and more tomorrow.
Posted on: Fri, 14 Mar 2014 15:06:54 +0000
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