Subscribe to this blog's feedI hate that word, retarded, and the fact that so many people still remain uneducated about PML (Progressive Multifocal Leucoencephalopathy) and its effects. PML is a brain disorder caused by HIV and other immunosuppressant diseases which causes a host of physical infirmities that can include dexterity, walking, eyesight and voice, to name a few, and it can vary in severity from one individual to another.
I am writing this in response to anyone (particularly another PML-sufferer who had the sheer luck not to have a lot of bad symptoms) thinking they are so much better and has never, EVER been belittled in life for one of their shortcomings whether physical or mental/ emotional. Unless you claim to be 100% perfect, then you are my God and I will keep quiet.
There is nothing more demeaning that having a person talk loudly and slowly to you like that will help you understand them!! And, to have the person think they have to bend down to be heard and understood! (I am in a wheelchair) There is nothing wrong with me cognitively! I can think more clearly, remember things, calculate and have my talents which more than likely; exceeds the jerk talking to me.
And, I really love to hear how I or a colleague is not trying!!! So, having a daily therapy and exercise routine that would do any gym or work out fanatic proud, for almost nine years means nothing to the unqualified idiot stating such generalizations. Maybe, that person cannot empathize with any plight or affliction that they, themselves, are not personally coping with. It would be a very hard lesson.
Wheelchair, or a cane, or a walker also does not equal stupid or lazy! I do appreciate a door being held open for me or anyone struggling with the door because of a cane or walker. I sometimes take an offer from a courteous stranger to reach up for something, although; many times I reach for it myself because I can stand from my wheelchair. To me it is courtesy or being decent. I appreciate any offer and if I am inclined to do something myself, I answer very politely, "No, thank you, but thanks for asking" and smile, which almost always is returned.
So why does any person feel the need to berate another human being? All I need to ask is, "How perfect are YOU?"
Hello God
I have been very interested in reading your blog, inasmuch as I'm a HIV+, PML-diagnosed person who very nearly lost hope. I was first diagnosed with HIV/AIDS symptomatically last fall when I had contracted PCP. I was first diagnosed with PML this year in March, after speech-related symptoms had been apparant (to me) for over a month. I was hospitalized for about four weeks, and spent several weeks afterwards in a rehab facility (nursing home) then several weeks more of PT and OT at home as I regained some of my strength. I am now walking okay, (I used a wheelchair for several weeks, then a walker for several months, then a cane, then nothing) but I am recently noticing my vision deteriorate, and while I type well, I do not hand-write very well (although much better than 6 months ago) and I no longer play piano and sing professionally. My baby sister is an athletic trainer who truly believes in re-routing, and has encouraged me to "keep working" at playing piano and singing. I have not noticed that those specific fine motor skills have improved, however. I can indeed play better than the average bear, but doubt that I will ever be able to play professionally again. Again, I do not appear to have any long-term cognitive impairment, as I have no difficulty problem-solving or the like.
Anyways, after reading that only about 10% of PML-diagnosed persons survive more than a year after onset of symptoms, and that the longest anyone has ever survived with PML is something like 11 years, I questioned why I was trying so hard to survive when in fact my life is much less fulfilling than it was prior to my falling ill, and quite frankly, I'm not very happy. Then I saw your blog, and notice that you've survived 10 years after diagnosis, and that you have symptoms MUCH worse than mine, but somehow you keep going.
Do you have advice for me? I'm all ears, of course.
Sincerely,
NIK