November/ December 2009 Update

First, I have to say that this year, 2009, was a lousy year for death and very sorrowful milestones personally even though I did have some high points the past year. But, the sadness seemed to over-shadow any joys I might have enjoyed, but then in time…

My number one issue with 2009 is it has been ten years since my confirmed diagnosis on November 3, 1999 of HIV/ AIDS and it will be ten years since I walked the first week of December (another awful anniversary for me). And, it will be ten years in February of 2010 (three months coming) since I was taken by my family from New York City back to Northeast Pennsylvania. I am grateful now for everything they have done for me and especially my sister Arlene because I am sure I would have died back then.

My recent counts: CD4 is 864, viral load is undetectable. I am happy with them because I was sure everything would be a mess with all that has happened – major stress – and fighting a head cold.

The Holidays have been so hard with Dad’s passing in May and then the sudden death of Jimmy, my brother-in-law, in October. I live with my sister Arlene and Jimmy, so it has been unsettling. At first I wasn’t sure if I had any reason to celebrate, but then there’s Mom, my siblings and the little guys and girls, (my siblings’ children and grandchildren). Dad’s birthday is on the 25th, Christmas Day – even harder. Thanksgiving was tough because Dad always ate here. This year we had Mom and Arlene’s son with his two boys, so it was fine until everyone left.

At first, I was not going to do anything this year, but Dad really would have been upset if I let it pass. I did do Christmas and Holiday cards though and I do plan to bake but mainly as gifts. No decorating this year but I just haven’t been in the mood to decorate and highly doubt my mood will change. I am going to the family Christmas party on the Eve in honor of Dad. Next year has got to be better!!

I did have my book self-published in July 2009. I have been keeping myself busy with trying to market it mainly by contacting various organizations, media people and of course, celebrities interested in any HIV causes and gay rights.

Another step for me in going forward is finding a career/ job that suits this area and economic climate. Again, ten years is quite enough and I have been very restless lately. I am planning to go back to school on February 1, 2010 for medical transcription and billing at a local Tech school. The actual course is five months with two and a half months of on-the-job training, a sort of internship. I smile because I have to wear scrubs for class so I look “professional” – that ought to be fun!

I have been trying to use so many organizations to jumpstart my life again like the Office of Vocational Rehabilitation (OVR) which pointed me in many directions. One in particular is Career Counseling at a local university. I think they are of some use, but they keep trying to direct me into art and fashion. Not a big industry here – maybe fifty years ago, with the manufacturers that used to be here. They even suggest computer graphics, etc format to basically tele-commute with companies in NYC or LA. I remind them that I haven’t proven myself in an industry I haven’t been involved in for ten years and there is much more to invest in since so much has changed.

Another very big step for me is getting a new apartment after January 1. This was something I have been mulling over for at least six months and even discussed this with Arlene and Jimmy and it became an important option when they were going to build a house. It was their house and I disliked the fact they were feeling it was necessary for them to continue worrying about me. So, when Jimmy died very unexpectedly, I put things off for a bit and then I began thinking – Arlene shouldn’t have to worry about me or vice versa – we both need to start over again, it’s time. I am fifty-one and Arlene will be fifty soon. We both need our own space. I joke that all the old horror and thriller books and movies of the past had a brother and sister living together. I don’t want to be the creepy brother and sister living on the hill to scare the beegeezus out of neighborhood kids!

I have to admit that I think I have been using living with Arlene and Jimmy as an excuse to keep my life on hold.

The apartment is a large one-bedroom disabled/ handicapped accessible place. Meaning it has all the grab bars in the bathroom, the shower has a chair/ handheld showerhead/ pedestal sink/ etc. and the kitchen counter and sink are also accessible. It also has three huge closets – I am worried that I haven’t enough stuff to fill them! The living room, dining room and kitchen are one big room with the kitchen having maybe three feet of linoleum. All else is carpeted – well, not the bathroom which is also large. And, it is my own place with my things and my rules now. I will be on my own again – exciting and scary. I wonder if anyone in the family will visit or do I have to keep the effort going myself?

I will send the address and new phone number when I get it all together.

Shadow, the eight year-old, male white shepherd here scared the crap out of us at the end of November. He had a hard time moving so I had Arlene’s one son take him to the animal ER about ten miles from here and I followed in my van. I never would have been able to handle him being in a wheelchair. We found out he has Lyme disease which caused his inability to walk. So, after an overnight stay with IVs and antibiotics – he’s back to normal – playing Frisbee and being his usual nosy self! Thank God!

One very good thing is I had a reunion of high school friends who were partners-in-crime a.k.a. The Buzzard Club. It was great to reconnect with everyone – much thanks to Facebook – the stories of memories from back thirty-three years were mostly hysterical and I am glad.

My next update will be February/ March I am thinking, so I’ll have more to tell about the apartment and school.

Parts of the book edited out – high school years!

Junior high consisted of grades seven, eight and nine and the school was separate and at its own location. Senior high consisted of grades ten, eleven and twelve. Now, remember, by the end of my ninth grade year, I had a forty-two inch waist, weighed 220 pounds and had long hair. The summer break before I went to high school, I put myself on a strict diet and exercise program. The hard work and discipline paid off and by the time I entered tenth grade, my sophomore year in the high school, I had lost fifty-five pounds and gone down to a thirty inch waist. Just before school started, I made a further change in my appearance by cutting my hair and changing it from the long and messy “hippie” style to “disco” which was short, parted in the middle and feathered back. My change was so great that few of my friends from junior high recognized me. The changes enabled me to get in with the “cool” crowd at school.

The summer before my senior year, I chose to move in with my father because it would be quieter and studying easier. That last year in high school, I was still lusting after the same English teacher I had had my junior year. He was everything I could have wanted, at that time—an athletic, handsome, hunky and of Italian descent man with a preppy attitude and dress. I can attribute my secret desire of him to my future penchant for more exotic, hunky and ethnic men when in New York City.
Although I lusted after that same teacher during my senior year, I also partied with a few football players and secretly desired some of them too, BUT never ever had the audacity to attempt seduction. I liked all kinds of strong men which were quickly noticed and usually made part of my imaginary life. My daydreams were imagining hunky men fighting to be with me every day or even every hour – a gay soap opera in my mind! Damned romance novels!
My close friends during that time were Vicky, a chunky, cherubic girl with a great smile; Dave, a very skinny, intelligent and hilarious guy; Sandra, a brassy and bubbly girl; Stefan, a somewhat chunky, but loud clown of a guy; Michele, a goofy, quiet sort of girl; Pamela, a very funny Zodiac comrade; and Lisa, Sandra’s ditzy and lovable partner in crime.
Dave, Sandra, Stefan and I even formed our own club between us – “The Three Chartreuse Buzzards” complete with a song, “Three chartreuse buzzards; three chartreuse buzzards sitting on a dead cow. Oh, look! One of them has flown A-way…” We had our own salute too – curving our arms and hands into a buzzard-like stance and shaking our hands back and forth to greet one another.
Vicky, Dave and I liked to go to drive-ins to party. We were always hoping to see a new movie and enjoy our beer. We talked and socialized more than watching a movie.
Once, Dave, Sandra, Lisa—Sandra’s best friend—and I got thrown out of a drive-in for being too loud because we were yelling insults at kids from a rival school.
It seemed we were always meeting Sandra and Lisa at Sandra’s parents’ house whenever serious fun or a party was involved. Dave was often our chosen driver, but he never had any luck with his never-ending automobile mechanical difficulties. We never cared; we laughed and barreled ahead.

Vicky and Sandra were always jealous of one another so Dave and I always did our best to keep them separated in alternating social events that we choreographed to the best of our abilities.

My father let me have parties at his place and it was there that many funny incidents occurred. One thing we always served was a “punch” that had grain alcohol as an ingredient and was very strong. Dave lit one of his glasses of the punch as a joke, then after drinking the “punch,” he walked into the Susquehanna River that was not far from my father’s house. Evidently Dave didn’t realize what he was doing until he began getting wet.
We listened to Bachman Turner Overdrive, Aerosmith, Elton John and the Doobie Brothers. Any song from Elton John’s, Goodbye Yellow Brick Road album was a favorite of all of us. “S-A-T-U-R-D-A-Y Night” by the Bay City Rollers was our anthem. I remember taking a bus to a concert in Philadelphia with Vicky and Dave to see Bachman Turner Overdrive and thinking we were just too cool – we loved BTO. And, didn’t we try marijuana that night for the first time?
I learned to dance at the local high school dances that were held every Saturday night at a rival school. Just that in itself was sort of cool. I learned to buy beer with an illegal ID! All of us would drink some beer before the dance; save a few for after and then cruise the town. On one of those Saturday nights, I sideswiped my father’s new car by cutting a corner too close and hitting a fire hydrant. (I lied for years; telling him it happened in the parking lot. Then, in a separate incident, three of my friends and I were going to the dance in my father’s old, beat-up car he used for work, and we had a case of beer in the trunk. When I drove into a nearby parking lot, I accidentally went over something and pulled the muffler from underneath the car. We almost shit our pants when a policeman came over and offered to help us tie up the muffler. All of us were in a panic he would find the beer. He never found it and we all were relieved.

A memorable school trip happened in my senior year. And, I think the school board prohibited overnight trips after that one!

I had a great time in Washington, DC that weekend with Sandra, Lisa, Dave, Pamela, Stefan, a few of my football player friends like Stewart and an assortment of newly-acquainted cronies for our harmless, but very funny escapades.
Pamela, Stefan and I took some new-found friends to a nightclub into which we could inveigle our entry. We loved Disco music so much and were sure such an adventure would further enhance our cool factor back at school. It was a humorous night as we drunkenly navigated highways and dark streets back to the hotel we were staying in. I still laugh when I think of one of our new friends, Diane, walking, or was it diving, into a decorative hedge on our way home.

We had sophomoric fun painting rear-ends gold and putting guys names on bare feet facing one another like they were having sex. Everyone thought the two guys were gay, so I joined in the joke for fear of retribution. I remember playing with a funky-looking bathing cap when inebriated a little bit and my friend, Dave wearing a turquoise-colored bikini over his clothes. But, I wasn’t gay, right?
Actually, we did get yelled at because on the third day, after two nights of rowdy pranks and drinking, we did not feel like getting off the bus to sightsee because all of us were too hung over.

It seemed that I was always having parties when my parents were away for the night. A very memorable party at my father’s also again was when Sandra brought her cousin one night. I had invited Dave and Stewart, one of the more friendly football players we had taken into our group. After Sandra’s cousin had drunk a lot of our “punch” along with eating a lot of peanuts, she told us how “cool” she was just before she threw up all over my father’s sofa. Quickly we tried cleaning the sofa cushions’ covers in the washing machine. It worked pretty well except when drying them, peanuts dropped out of the dryer. In our condition, we were surprised the peanuts hadn’t washed out of the drain of the washer. Dave was nominated to put the very sick-feeling cousin into the shower and turned on the cold water hoping to straighten her out before Sandra had to take her home. Dave came out yelling how she had the darkest pubic hair he had ever seen and that broke the tension of the night. All I kept saying over and over was, “Son of a bitch!” After we cleaned her up, we laid her down on my father’s bed hoping she would rest but she threw up again. What a mess! We all ended up cleaning the bed too until about three in the morning. During that time, Stewart tried asking Sandra to the Senior Prom and she yelled at him as she was helping to clean, “Not now!”

Actually, I even tried writing a romance novel during my senior year using myself as a model for the heroine and used numerous television stars and football players as my lovers vying for my attention!

Regarding my book, More Than a Wheelchair, More Than HIV

I have decided to use my BLOG to “publish” the sections that were edited out of my book! I was told they had little to do with the overall story and would usually have a choice given to me on different passages, so in order to keep one, I often had to give in on the other and have it deleted from the manuscript. After talking to so many people who often remind me of the missing passages, I have to make them known to everyone who wishes to read them because they ARE funny or poignant and do matter in the end. So, here are the missing pieces of the puzzle of my life’s story. I have added to and rearranged each episode to hopefully make sense of these missing parts of my book to formulate a true understandable account of this moment in time.

Chapter 1 – Growing up in the 1960s and early 1970s

The house where we all grew up was small, with only three bedrooms. Naturally, since I had three brothers, all four of us had to share one bedroom. Adjoining our bedroom was the girls’ bedroom where all four of my sisters shared the room. Previously, the upstairs bedrooms had been the attic. As my parents had more children over time, my father re-modeled the upstairs into bedrooms and put in lacquered wood stairs with an ornate metal handrail.
The house originally had had grayish tile covering the outside with a huge enclosed front porch with evergreen trees in front of it. We used the porch as a summer bedroom and a play area in the spring and summer. When renovating, my father removed the front porch, put up an awning over the front door and cut down all the pine trees. He also replaced all the windows in the living room, putting in a large picture window and then proceeded to add a laundry room and a second bathroom, before finishing off the exterior with new-fangled white siding.
Before my parents had a gas stove and an oil-burning furnace installed, I remember we had a kitchen stove that used coal and the heat for the house was also provided by coal. On winter days we used to dry our socks and underwear on the top grate of the massive coal furnace that heated the house. Scorch marks where a sure sign of neglecting laundry!
One of my daily chores had been to take the ashes out and bring in new coal. At that time, we had a big coal bin and soon learned to use coal to draw on the stone sidewalk that ran around the back of the house to the garage’s large front pad. Coal made drawing great hopscotch boards on the cement easy.
Also during our coal era, we had an old wringer washer and I loved to watch my mother and sisters put the clothes through that wringer. When we got a new spin washer and matching dryer, it made doing laundry much easier for them, but it wasn’t the same for me.
The property on which our house sat had once been used as a clambake grove many years previous. There had been two pavilions that had had different uses such as for dancing and cooking and out-houses tucked away in the field for the patrons. Eventually, my father had one of the pavilions closed in and used it as a barn for storage and shelter for a bull we once had. The other pavilion was eventually torn down.
My father’s garage was always neat and clean and he kept every nut, bolt and screw in glass jars that had their metal lids nailed to the underside of his long, heavy workbench. Since there was no clutter on the smooth cement floor, the garage is where we practiced our roller-skating and the older siblings had parties – like a memorable Halloween party one year. I think the apple cider was spiked.
Our dad had a huge, or so we thought, garden behind the house between the back yard and the base of the mountain. He always put in corn, potatoes, scallions, green peppers, tomatoes, cucumbers, green beans and yellow beans. All the kids had to help with the planting, weeding and fertilizing. Of course, we hated working in the garden, but loved taking the salt and pepper shakers with us to eat tomatoes right off the vine which were still warm from the sun.
My father had a little hand-driven tractor he used to dig up the garden in the spring. Then in winter, he attached a front plow for the snow. The plow never worked very well, so all of us, and my father, would shovel the driveway with the mandatory snowball fight afterwards. The tractor was kept in a little shed in the back yard, but we kids called it the “barn.”

We shared the mountain we lived on with Antoinette’s family that had nine kids. Between our two families there were a total of seventeen kids. Some of us were close in age and naturally bound to be friends. On the mountain, the elder kids had built a cabin and sometimes took us riding in old beat-up cars for fun on the old wagon paths. We would go to a place we called, “The Quarry” and to climb the face of the small cliff leading up to the cabin. There were names we had for different areas of the mountain. One other special place nestled in an overgrown field had mountain laurel bushes all over and was filled with tall, silky grass and we called it, “Green Village.”

We kept ourselves amused with our “clubs” and playing on the mountain or in our yards. Our “clubs” were always modeled after Secret Agent Man, SAM, or The Monkees and our clubhouse sometimes was an old dilapidated outhouse from the clambake grove era. Well, until a bat got caught in someone’s hair that one time…

We built forts out of ferns in the summer and snow in the winter and made make-believe horses out of long sticks and twine. We loved biking, walking and swimming when we were younger. By the time I was a teenager, my mother had an aboveground pool installed for us kids. Originally I did the pool maintenance until passing those duties on to my sister, Arlene. Our walks became more daring when the old wire guardrails were replaced by stainless steel, solid waffle-like rails. That was because with sneakers, we could balance and walk on top of them. It became a challenge to see how far you could go, before falling off.

Football games were an important part of our childhood, instilled by the older children. We learned to love a game that was so important to the area. Rival school districts made us wary of their fans but the most intense feelings were saved for the annual Thanksgiving Day game with a neighboring district which we always attended. Sadly, thirty plus years later, that tradition no longer exists.

Holiday memories include:

Remember writing out Valentines to classmates, making hearts with doily edges and even cut-out silhouettes of Lincoln and Washington? And, making four-leaf clovers to celebrate Saint Patrick’s Day was the major March activity just before making daffodils and butterflies for spring.
Rolling the Easter eggs on newspaper to make sure they were dry before replacing them back into the carton.
My favorite Halloween costumes were hand-made by my mother back then and Thanksgiving was made special if it landed on my brother, Christian’s birthday. There were candles in the turkey!
And then, Christmas

All of us children would sing Christmas carols along with Mitch Miller too. Our Christmas trees were always real and I remember how colorful the outside lights would be. We had a lighted Nativity until one of our dogs dragged the Baby Jesus through the front yard and chewed through all the wires. Arlene, Natalie, Antoinette and I, would go caroling—a good excuse to build snow walls in the middle of the road or stuff mailboxes full of snow. We looked forward to piling into the car to go drive around just to see the neighboring outdoor decorations which were only lights and a Nativity scene back then.

As I grew up and began wanting more in my life, I would steel every moment that I could to be alone and daydream. I often went out to the isolated backyard to sit on swings at night because I liked the quiet and looking at the star-filled sky without the haze from city lights. In summer, I sat and enjoyed the warm breezes blowing through the trees on the mountain or through the weeping willows in the yard and the flashes of heat lightning. Also, I loved watching the June bugs or lightning bugs as we called them and would lose myself in the rhythm of the swaying swing, look up at all those stars and wish I were someplace else, somewhere exciting. And, I’d have my special love. Sigh.

WHY I WROTE THE BOOK THIS WAY

I originally had probably enough to make this current book over 700 pages when I started. Looking back, I should have done a “Before” and “After” – Volumes I & II!
HA HA

I had it edited which the person doing the editing felt much was not really significant to my story’s point. Then, I redid the format of the book which suggested even more cuts of memories to make this new set-up more sensible. In this new layout, I did keep some of the things that I felt were too important to my personality development for my story to make its point.

It killed me to delete so many very funny stories involving friends, but they are all written down and waiting for an original manuscript to include them. I have kept every one of them – all written down and tucked away on disks! Things that were funny, poignant and somewhat sleazy have spanned my high school years to my forties. They should be told anyhow, someday – maybe there SHOULD be a Part II!

I am sure many friends would recognize themselves even with the name changed. I have more than enough from high school, my careers in retail (here at home and in Philadelphia) and wholesale (NYC), the 1980s, the 1990s – so many funny situations of youth and middle-age.

Now, how to make these moments into a book…

And, some of the seedier moments in my life did make some impression on my life that still taught me a lesson, but not important enough for, More Than a Wheelchair, More Than HIV.

PML DOES NOT MEAN RETARDED

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 or drugs 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

More Than a Wheelchair, More Than HIV

I am using the Introduction to my book, More Than a Wheelchair, More Than HIV: Overcoming PML, to give everyone more insight to this disease as my first entry to this BLOG.  I think it is important for people to know what PML actually is and it is truly a horrific malady brought into fruition by a host of other primary health issues, not only HIV.

The next entry will be a bit more personal and hopefully the BLOG will continue to be so.

“I never thought I would have survived my bout with AIDS and the PML (Progressive Multi-focal Leucoencephalopathy).  I could have died a few months after my diagnosis, but here I am!

First, you need to look up Progressive Multi-focal Leucoencephalopathy on the Internet.  There are a lot of different sites with a lot of varying information that would keep you busy for hours going to different sites.  A trip to the library would have you busy for hours too going through pages of information.  Being a 21st Century person, I like the ease and convenience of the Internet and highly recommend using it.  I chose to combine the blurbs from NIH (National Institute of Health), AIDSmap.com and AIDSinfonet.org for the best, easiest and most concise outlines of details regarding a brief overview of the PML to give you quick knowledge of this terrible disease by each of these organizations.

First and foremost, what is PML?

As of February 2009

From  – NIH (National Institute of Health)

What is Progressive Multifocal Leukoencephalopathy?

Progressive multifocal leukoencephalopathy (PML) is caused by the reactivation of a common virus in the central nervous system of immune-compromised individuals. Polyomavirus JC (often called JC virus) is carried by a majority of people and is harmless except among those with lowered immune defenses. The disease occurs, rarely, in organ transplant patients; people undergoing chronic corticosteroid or immunosuppressive therapy; and individuals with cancer, such as Hodgkin’s disease, lymphoma, and sarcoidosis. PML is most common among individuals with acquired immune deficiency syndrome (AIDS). Studies estimate that prior to effective antiretroviral therapy, as many as 5 percent of people with AIDS eventually developed PML. For them, the disease was most often rapidly fatal.

With current HIV therapy, which effectively restores immune system function, as many as half of all HIV-PML patients survive, although they sometimes have an inflammatory reaction in the regions affected by PML. The symptoms of PML are the result of an infection that causes the loss of white matter (which is made up of myelin, a substance the surrounds and protects nerve fibers) in multiple areas of the brain. Without the protection of myelin, nerve signals can’t travel successfully from the brain to the rest of the body. Typical symptoms associated with PML are diverse, since they are related to the location and amount of damage in the brain, and evolve over the course of several days to several weeks. The most prominent symptoms are clumsiness; progressive weakness; and visual, speech, and sometimes, personality changes. The progression of deficits leads to life-threatening disability and death over weeks to months. A positive diagnosis of PML can be made on brain biopsy, or by combining observation of a progressive course of the disease, consistent white matter lesions visible on a magnetic resonance image (MRI) scan, and the detection of the JC virus in spinal fluid.

Is there any treatment?

Currently, the best available therapy is reversal of the immune-deficient state. This can sometimes be accomplished by alteration of chemotherapy or immunosuppression (even if it means losing non-vital transplanted organs). In the case of HIV-associated PML, immediately beginning anti-retroviral therapy will benefit most individuals.

What is the prognosis?

The mortality rates for those with HIV-PML have fallen dramatically from approximately 90 percent to around 50 percent according to most reports. For non-AIDS individuals with PML, the prognosis remains grim; the disease usually lasts for months and 80 percent die within the first 6 months, although spontaneous improvement has been reported. Those who survive PML can be left with severe neurological disabilities.

What research is being done?

The National Institute of Neurological Disorders and Stroke (NINDS) and other institutes of the National Institutes of Health (NIH) conduct research related to PML in laboratories at the NIH, and support additional research through grants to major medical institutions across the country. Much of this research focuses on finding better ways to prevent, treat, and ultimately cure disorders such as PML

From  – AIDSMAP.COM

Progressive multifocal leukoencephalopathy (PML) is a rare disease of the central nervous system which results in the destruction of the sheath that covers the nerves. It affects about 4% of people with AIDS.

PML is caused either by primary infection or reactivation of a virus called the JC virus which is a type of papovavirus. The JC virus is named after the initials of the first person with PML in whom the virus was identified. The majority of the population is believed to have been exposed to this virus and to carry it without symptoms in their kidneys, lymphoid tissue, bone marrow and lymphocytes. In an adult or child with a weakened immune system, the virus can be reactivated and spread to the brain by lymphocytes.

Once in the brain, the JC virus infects oligodendrocytes, the brain cells responsible for producing the protective sheath (myelin) around the nerves. Without this protection on the nerves, the nerve cells die and cause lesions in the brain. Neurologic dysfunction may follow quickly, and the condition can rapidly cause serious, life-threatening disease.

Prior to the introduction of highly active antiretroviral therapy (HAART) people with PML survived an average of two to four months after diagnosis. Survival for longer than one year appears to be more likely among people for whom PML is the first AIDS-defining event, or who have relatively high CD4 cell counts.

HAART has extended the average survival time of people with PML. A recent study found that approximately one-third of patients died within two years of their PML diagnosis, despite treatment with HAART. On average, deaths occurred within twelve weeks of PML diagnosis. Experts have calculated that people with PML will survive an average of three to four years, depending on their baseline CD4 cell count (Berenguer 2003).

Symptoms and diagnosis

PML can cause a variety of symptoms related to mental functioning, including confusion, disorientation, lack of energy, loss of balance, weakness in the arms or legs (usually on only one side of the body), blurred or double vision, speech difficulties and loss of vision in one eye.

Brain scans such as computerised tomography or magnetic resonance imaging can reveal the presence of lesions in the brain. To determine whether these lesions are caused by PML or by other opportunistic infections or cancers (e.g. toxoplasmosis, lymphoma), a polymerase chain reaction (PCR) test can be performed. A PCR test looks for the presence or absence of the DNA of the JC virus in a sample of spinal fluid. However, the PCR test does not produce a definitive diagnosis because some people are JC-negative when diagnosed with PML.

A brain biopsy remains the definitive way to confirm a diagnosis of PML.

Plasma and urine PCR tests for the JC virus have been developed, although their uses in the clinical setting are yet to be determined. In one study, only 41% of people with detectable JC virus in a brain biopsy also had detectable JC virus DNA in their blood (Hou 2000; Whiley 2001).

PCR tests which quantify how much JC virus is in the cerebrospinal fluid (CSF) have also been developed. There is some evidence that high JC viral load is associated with a poor clinical outcome (Garcia de Viedma 2002; Giri 2001). However, as with the plasma and urine tests, they are not currently used outside the research setting.

Progressive multifocal leukoencephalopathy in the age of highly active antiretroviral therapy

PML in the age of HAART remains a life-threatening condition with a relatively poor prognosis. Nevertheless, several studies have shown improved survival of individuals with PML since the introduction of HAART:

· A CDC review of 415 cases of PML in the United States found that protease inhibitor use was the most likely factor to improve survival after diagnosis (Dworkin 1999).

· Spanish researchers have reported that 30% of people die within two years of their PML diagnosis and that a CD4 cell count above 100 cells/mm3 at diagnosis is associated with increased survival (Berenguer 2003).

· A review of the Italian Register Investigative Neuro AIDS (IRINA) Study found that people with PML survived an average of 245 days when prescribed HAART and 66 days when HAART was not available (Antinori 2001).

· Retrospective analysis of PML cases at the Johns Hopkins University HIV clinic found survival associated with HAART, but not with use of up to two anti-HIV drugs (Geschwind 2001).

· A review of 29 cases found that the average survival of a group of people with PML who received a HAART regimen was greater than 500 days, compared with 127 days for people treated with nucleoside analogues alone, and 123 days for people receiving no anti-HIV therapy (Albrecht 1998).

· An American study found that HAART improves the survival of people with PML, although 15 of the 25 people in this study developed PML while taking antiretroviral therapy, including eight people with viral loads below 500 copies/ml (Clifford 1999).

· A Spanish review of 27 PML patients found HAART extended survival significantly. People on no antiretroviral treatment or one or two drugs survived for an average of two months, compared with a median survival time of 21.9 months among those on HAART (Asensi 1999).

· Researchers from the French Hospital Database compared 109 people who were diagnosed with PML before the introduction of protease inhibitors, with 137 people diagnosed after that time. The risk of death six months after diagnosis was reduced by 63% among people on HAART (Tassie 1999).

However, despite the documented benefits, PML has occurred in individuals being successfully treated with HAART, and there is evidence that PML may worsen in some individuals who experience immune recovery associated with HAART (Chocarro 2000).

This exacerbation of PML is thought to be associated with immune reconstitution, particularly in people with very low CD4 counts who have recently started HAART. For instance, Spanish researchers have argued that inflammatory changes in the brains of four of nine people on HAART and one of 19 on single or dual therapy, suggests a possible link between the potency of the antiviral drugs and the inflammatory reaction (Miralles 2001). A review of hospital admissions conducted at the Chelsea and Westminster Hospital, London, between January 1997 and October 1998 found HAART had uneven effects on PML. Three new cases of PML were reported, although immune recovery illness was unlikely to be the cause in one person who had been on HAART for over two years (Shaw 1999). American doctors have also reported cases of PML in people on HAART with low or undetectable viral loads (Clifford 1999;Tantisiriwat 1999).

Experts believe that antiretroviral therapy improves clinical outcomes by reducing the amount of JC virus in the fluid around the brain (Giudici 2000). In the age of HAART, both high JC viral load and low CD4 cell count at PML diagnosis have been identified as predictors of poor outcome and survival (de Luca 2001; Miralles 2001).

Treatment

HAART is currently used to treat people with AIDS who develop PML. There are no proven treatments specifically for PML although several drugs have been tested.

Cidofovir (Vistide) is one agent which has been investigated as a potential PML therapy although evidence to date is inconclusive. An Italian team has reported longer survival among 27 people treated with HAART plus cidofovir compared with 16 treated with HAART alone (De Luca 2001). In this study, cidofovir was independently associated with reduced risk of death. A Spanish team initially reported that cidofovir therapy was associated with survival in 118 people with PML who were treated with HAART but full analysis of these data showed that cidofovir had no impact on prognosis (Berenguer 2003).

Other studies have also found that cidofovir is ineffective against PML. An American study, ACTG 363, found that cidofovir had no impact on PML lesions or survival in 24 people (Marra 2002). Furthermore, a French study found that cidofovir provided no benefit additional to antiretroviral therapy as a treatment for PML (Gasnault 2001). Several case studies in wihch cidofovir was used to treat PML have also produced inconclusive results. Finally, one study has found that the addition of cidofovir to HAART in patients with PML reduced survival time (Wyen 2004).

There have been some anecdotal reports of reduction in symptoms among people treated with cytarabine (also known as ara-C) injected either into a vein (intravenously) or into the spinal column (intrathecally), but a controlled trial found no difference in the death rate between people treated with antiretroviral drugs alone and those who also received cytarabine (Hall 1998).

Similarly, case reports suggested that interferon alpha may have benefit, but a retrospective review found that interferon alfa had no benefit in addition to HAART (Geschwind 2001).

The anti-cancer drug topotecan (Hycamtin) is being tested as a possible treatment for PML in the United States. However, early data on this drug suggests it has little or no impact on PML (Dupont 2001).

*****More information is available on this site.

From Aidsinfonet.org: fact sheet # 516

What is PML?

Progressive Multifocal Leucoencephalopathy is a serious viral infection of the brain.

“Encephalo” means brain. “Pathy” means disease. Encephalopathy is a disease of the brain. “Leuco-” means white. Leucoencephalopathy is a disease of the white matter of the brain.

“Progressive” means that this disease gets worse in a short time. “Multifocal” means that it shows up in several places at the same time.

Researchers estimate that about 6% of people with AIDS develop PML. Most cases of PML show up in people with CD4 counts below 100. The exact rate is hard to know because PML is difficult to diagnose.

Most cases of PML used to be fatal. People diagnosed with PML lived an average of 6 months, and most died within 2 years. However, if people with PML start taking strong antiretroviral medications (ARVs) to control their HIV, they can survive much longer. Now only about half of people with HIV and PML die from PML.

The “JC” virus causes PML. Between 80 -85% of all adults are exposed to this virus worldwide. In people with weakened immune systems, JC virus can become active.

How can PML be detected?

The first symptoms of PML are weakness or coordination problems in an arm or leg. There may be difficulty thinking or speaking. Vision and memory problems, seizures, and headaches can occur.

These symptoms can also occur with other opportunistic infections, including toxoplasmosis, lymphoma, inner ear infections, or cryptococcal meningitis.  It is important to rule out these other diseases.

PML can be diagnosed using a scan of the brain by magnetic resonance imaging (MRI). Another way to test for PML is by checking spinal fluid. The sample is taken by inserting a needle into the spinal canal. This procedure is called a spinal tap.

How is PML treated?

A major problem with treating any brain infection is the “blood-brain barrier.” The blood vessels around the brain are different from the rest of the body. They are “tightly woven” to protect the brain from toxic substances. Chemicals that dissolve in fat can get through. Those that dissolve in water can’t. Unfortunately, this includes most antibiotics and many other medications.

There is currently no proven treatment for PML. Research studies have had conflicting results. Some possible treatments have not been carefully studied. However, PML has slowed down or stopped in some patients taking strong ARVs to fight HIV.

Ara-C (Cytosine arabinoside or cytarabine) has been tried against PML. It was given intravenously, or pumped directly into the brain. It seemed to work in one small study, but not in later ones. Ara-C is very toxic, and damages bone marrow.

High-dose AZT has been tried against PML, because it crosses the blood-brain barrier. Other substances that have been tried with different degrees of success include acyclovir, heparin, peptide-T, beta interferon, dexamethasone, n-acetylcysteine, topotecan and cidofovir. Some studies show that IV (intravenous) cidofovir can make the brain work better in people with PML.

Because PML can progress rapidly, it is important to begin treatments quickly.

Where can I get more information?

An excellent source of information is the book Progressive Multifocal Leucoencephalopathy (PML): Case Studies and Potential Treatments. Peter and Lisa Brosnan wrote the book in 1993. They are not medical specialists. Lisa’s brother was diagnosed with PML and the Brosnans began searching for possible treatments. Lisa’s brother died, but they continued and published their work.

You can get a copy of their book by writing to Peter Brosnan, 1709 N. Fuller Avenue #25, Los Angeles, CA 90046. To cover his costs, he asks physicians and institutions to send $30, people with AIDS $20, and in cases of hardship he will send it free.

The bottom line

PML is a viral infection of the brain. It is fatal in about 50% of cases. It can be confused with other medical conditions.

There is no approved treatment for PML, although several treatments may be helpful. Any treatment must be started as early as possible. Combination antiretroviral therapy (ART) may slow the progress of PML.

******

If someone had told me when I was a senior in high school thirty years ago that twenty-fours years later, I would be classified as a gay man with a disease, called AIDS for short, dealing with complications from a viral infection of the brain called Progressive Multi-focal Leucoencephalopathy and confined to a wheelchair, I would have thought them crazy. But, that was exactly what happened.  I was a stubborn man refusing every warning that confronted me on a subject I should have paid more attention to.  So, in a matter of months, I went from my lofty life and fell into the depths of HIV/ AIDS/ PML.

Going on nine years since my diagnosis, I am still here in my motorized wheelchair, filled with hope, drive and determination to beat every hurdle I encounter.

I hate being called “handicapped.”  I am very fit, active and as mentally competent as ever.  Best of all, I have very definite goals.  I would never presume to compare my disabilities to those of someone who has lost an arm or a leg.  I am fully aware of the advantages I enjoy such as the ability to exercise to build strength to regain muscle coordination and control.  I am also lucky because all my mental abilities and memories are intact.  Since I have never suffered any short-term or long-term memory loss, various therapies have helped me to type, handwrite, talk and even draw and paint!  Most of all, I do not plan to ever give up.

My story travels a long road from my first experiences of being gay to becoming sick and facing death, ending with my fight to recover.  I intend to speak frankly, in my own voice, using whatever words I need to drive home my points.

It pissed me off that so little is known about AIDS-related PML.  That is why I intend to write as simply and directly as I speak.  And I do not intend to preach, I will tell you about the joy as well as the pain.  I was never one to be overly emotional, but hope the feeling of my story is conveyed to the reader even if I may seem to be a trivial human being at times especially in my twenties and thirties.  I want everyone to know that I was a valuable and vibrant human being before getting sick and almost dying.  I did not realize my own worth until beginning in 2000 I had to fight to re-gain so much of what I had lost.  As of June 2006, twenty-five years since the introduction of AIDS to human misery, there still is not a cure.  Why?

Did everyone stop caring?

I have had to develop most of my routine because no one, not even doctors or the therapists knew what was best for me.  Taking bits and pieces from what they taught me, I added exercises based, not only on the recommendations by friends and family, but those that I created to accomplish my goals.

There are so many things I could add to my lists of accomplishments, but I will save them for the last chapter in order to highlight the many hurdles I overcame as I battled each disadvantage the PML placed in front of me.  Many things regarding PML are unknown and the “experts” cannot and will not know everything.  I had to take all their observations, opinions and suggestions and create my own personal salvation, pushing myself to the limit every day.  It’s something that I have to do because I want my life back the way it used to be.

I have heard such heart-wrenching things from other PML survivors.  When they tell me how they thought they were the only ones to have survived, tears well up in my eyes.  I know the advances in medicines have been phenomenal in combating PML in its early and deadliest stages, but now, what about rehabilitation?

I have been amazed and truly moved by stories told by innocent women and hemophiliacs that contracted HIV from unknown sources.  I honestly believe they should never have had to deal with such a disease.  Life is not fair, huh?  And, the children!  I cannot even put into words the indignation I feel when I see or hear of HIV positive children.

I can only hope that very soon EVERYONE will realize very soon how important that their compassion and help is in this seemingly never-ending battle with HIV and AIDS.  It would be a terrible testimony to the history of the human race if, after the original surge of interest and concern, everyone just shrugged their shoulders and turned away.

Think, and use your heart.”