I am dealing with issues related to what it means to provide care giving to a family member. I am also here to help me in my adjustment to a recent worsening of my own health due to what my doctor refers to as an axonal polyneuropathy that is ,he suspects, immune mediated.
My care giving duties are mostly physical in nature. I have a young adult son who was born with a neurological condition that has rendered him unable to move his body at will. Joseph has what is called spastic quadriplegia. Remarkably he has been able to learn to articulate fairly clearly ,the muscles that control his speech being the most useful in his body.He has no seizures and his favorite pastime is listening to audio books,especially murder mysteries in which the characters are quirky,have romantic encounters ,and in which humor is prominent even as people get killed in all manner of not so fun ways.
My own health concerns developed about five years ago but it is only recently that they have reached a level of significance and severity that allows for a dx. I have had first and second tier testing including a ncs and am hoping confirm or disprove my doctor's tentative dx within the next year and discover if there are effective treatments.It is important I get a handle on the nature of this challenge so I can plan carefully how best to meet my son's needs as well as my own.
I am to here gather and share information and to give and receive emotional support during a period of difficult challenges in my life.I look forward to meeting people here who can relate to the challenges I face.