Movement Disorders & Public Scrutiny

Someone recently asked me what should someone do about public scrutiny if s/he has an obvious movement disorder, such as Huntington’s Disease, Parkinson’s Disease, or other neurological disorder?  This question could also be applicable to wheelchair users who are also prone to public scrutiny when out and about in the world.  While the focus of this article is on eating out in public, the “tips” provided apply to other situations as well. Let’s face it, people are going to stare. …

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Legal Planning for Incapacity

Let’s face it, legal planning for incapacity is not a particularly fun or glamorous topic to discuss or even think about.  But, it is an extremely important subject to address if you have a progressive disorder, such as HD. I strongly believe that everyone, disabled and nondisabled alike, should consider legal planning for incapacity if any of these following questions hit home for you: 1)  If I should be unable to articulate my needs or otherwise make my needs known…

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A Caregivers Bill of Rights

I have the right: To take care of myself.  This is not an act of selfishness.  It will give me the capacity to take better care of my relative/loved one. To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy.  I know that I do everything that I reasonably can for this person, and I have the right to do some things just for…

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