August 2009 Archives

I 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

My newest counts are:  my T-cells are 869 and the viral load remains undetectable.  That is my highest T-cell count yet.  In April the T-cells were 696 and the viral load undetectable.

My dad passed on May 21 of this year, so needless to say I was a total mess until the second week of June.  Dad, I think knew his time was coming after his hospital visit the Sunday before he died, May 17.  He was very adamant about going home and happily left with me that day.  Dad even had me take him by a bridge construction sight (he was a welder all his working-life and worked on many bridges throughout PA, MD, VA, WV, NJ and NY too, I believe) and by his brother's house on the way home.   The next day, Dad had to stay with one of my sisters as he seemed to need help in his daily needs.  Dad just seemed to wither even more the next two days, refusing to eat or take his meds and by Wednesday we re-admitted him to the hospital fearing then worst.  Dad got increasingly worse and by Thursday morning, May 21, he was just quietly curled up in the bed acknowledging no-one.  I managed to rub his hand and my sisters talked to him as he slowly sank even lower and we worriedly called for a priest.  Within minutes of the priest's visit, Dad lay on his back and kept saying "Hiya" (as if he was greeting people), making the sign of the cross and stretching his arms out as if mimicking the Crucifixion and then, finally went peacefully as if he waited for the priest before he passed. 

I must have been to the cemetery to talk to Dad twenty times since.  I miss him a lot - more than I ever imagined.

I have to tell you this dream I had about two weeks ago.  Dad's hands were very arthritic and full of gout and looked so gnarled, misshapen and painful, but he never complained.  His only complaint was he had such a difficult time doing the simplest of daily tasks and he missed what he loved to do like gardening, canning and house work projects.  Ever since he passed, I kept saying to him in my prayers, "I hope your hands are fine now."

It was as if he answered me because in this dream, he was doing something with his hands and showed them to me, "My hands are getting better."  I have been only able to tell my sister, Renee.  But the emotion still was very vivid and I could not tell anyone else without choking up, so I haven't yet, out loud, that is.

Then to make my life even more unbearable, my mom was in and out of hospital for a few weeks with stomach and intestinal problems.  I was very upset with this happening so close to losing Dad.  Thank God, she is doing so much better now and hasn't been back to hospital since.  The new meds and diet are working and she has energy back to do things again.

I did do therapy again at the John Heinz Institute and told them I needed a "tune-up" since I was so bored with my at-home exercises and therapies which haven't changed much in the last seven years.  "Teach me something new," I said.  I really think they did help me a lot.  I learned new mat, parallel bars and exercise ball work outs to help my balance.  I have new wrist and finger exercises too.  I bought a Bosu ball to use with the parallel bars also to help with balance.  The Bosu ball is like half an exercise ball on a huge, plastic disk on the bottom with a lot of options.

I did attain a goal - to use the riding mower to cut the grass!  I enjoy doing it besides it is so much easier than the push mower I had to use as a child.  This is actually the first time in twenty-six years that I cut the lawn.  I figure, nine years of the PML damage, twelve years in NYC and five in Philadelphia.  Silly, how an insignificant chore can mean so much now.

I finally got a new motorized wheelchair - a Golden unit, a Compass - same dimensions and features as my old Jazzy, plus a few more very good ones.  This one runs quietly, no squeaks and smoothly.  I have had my old Jazzy from Pride for eight years now.    Over the past year, I have had two new units from Pride which only had problems like noises and squeaks which I had returned after a few days or weeks even, but the owner suggested this make/ model.  I am much happier with the Golden.

I finally had my book published on July 13 (my Mom's birthday!) and am working on a marketing strategy to get it noticed.  My book is named, More Than a Wheelchair, More Than HIV: Overcoming PML.    I have my own web site - www.ronkudrako.com which links to my own BLOG at www.ronkspml.blogspot.com and, I am excited the book can be found on Amazon.com and BarnesandNoble.com too.  With all this finalized except for the marketing, I am hoping I have more time now for my BLOGs and posts on various sites which I have been unintentionally neglected of late.  It'll be so good to read and participate on these sites again.  I'll be setting up profiles on My Space, Face Book, Twitter, etc soon also.

My sister, Arlene and her husband, Jim are building a new house very soon.  They are having the land cleared and prepared for the house.  The exact timeline I could not give.  It will be a log-style home - A-frame with a deck.

I guess my next update will be around the Holidays and will hopefully give you a lot of new information.

As always,

Ron