My very own personal negatives and positives of HIV and PML which I will post in both my BLOG and Forums.
Special thanks to cmhjeff (Jeff), Juan Carlos, Robert in Red Bluff, xyahka & RAB (at this time!)
Every person with HIV/ AIDS (and me with the PML) has a choice to either mentally give up or strive to improve our lot in life. Every one with HIV/ AIDS/ PML has the physical problems and setbacks to deal with throughout their illness. The individual’s battles with daily life are their own little obstacles, but I rarely see or know anyone giving up and just accepting their fate. I am absolutely amazed at people’s inner strength and continued enthusiasm for life.
So, I REFUSE to be held down for my desire to improve MY life by accomplishing what ambulatory and less handicapped people take for granted or those that are tunnel-visioned to only allow for their own suffering and wish their lack of determination on others. I cannot imagine my life if I had given up – I’d be dead or worse – living to die.
My biggest complaints of HIV/ PML – stomach-churning migraines every month, month-long constipation, and, oh, my wheelchair, are my weaknesses I need to deal with daily. I, myself, choose not to give in to every impediment that my day presents to my life and am very empathetic to what each person has to deal with what I read about or hear about. But, I am so full of admiration for these people when they realize they just need to shrug their shoulders and forge ahead.
After my diagnosis on November 5, 1999, within the next 3 months – I couldn’t walk, talk, write, cook, feed myself, bathe myself and even hated to sit up. And when I did lie down (which was 23 hours each day), I constantly felt like I was falling as the PML destroyed parts of my cerebellum. I had to have people move me, feed & cook for me, bathe me, help me go to the bathroom and even write for me because by this time, my signature had been reduced to a shaky “X.”
Fast forward to 2007. I have far exceeded any expectations of PML survival and continue to modify my life to circumvent the obstacles I still face. I am very aware that the HIV may cause heart, kidney or liver failure as time progresses, but I choose not to dwell on this information and have it rule my remaining time whether 1 more year or 20.
So, I have learned to feed myself, cook again and even clean house from a wheelchair.
I can shave, shower, brush my teeth and wipe my own butt again!
I can play with the dogs, sunbathe and do yard work – from my wheelchair.
Every day, I do 4 to 5 miles on my stationary bike, read aloud 6 pages from a book (currently a poetry book) and practice my handwriting 45 minutes by writing in Spanish or French. (I like being mentally active too)
Monday through Friday, I have a nice routine of parallel bars, Pilates & calisthenics, the Ab Lounger, the rolling walker and the free weight dumb bells – to keep up my tone, muscle, strength and fluidity. I don’t think I gave up. Hey, as long as I can – I plan to do it all.
I can sketch and paint again – slower now, but I am good! I am focusing on trying to be an author now – my new career direction – writing.
My newest goal – get my driver’s license back, buy a converted mini-van with hand controls so I can take my motorized wheelchair along and then…
I can shop whenever I want or need, go to a high school football game, go to a bazaar or flea market, road trips, go out to a restaurant or a concert or a show or just go for a drive.
With all my accomplishments and victories as well as everyone else’s – all I wish to say is one more thing to Simon – get a life and some intelligent thoughts about HIV.
Excellent written man!! i am so proud of you!! big hugs from sunny Ecuador
Ron-
Thank you for being an inspiration. You truly portray a man of strength and courage. I've come to learn a lot about HIV in the past year since my diagnosis, but didn't know much about PML. Your blog has educated me to the obstacles and complications that comes with this horrible disease that I was not aware of. But keep writing cause we care and want to hear your about your next victory.
A great big hug from AP, Jersey.
Ron, this post pretty much took my breath away. I could have written it myself. I too survived PML and the daily struggles to muddle on with your life are awful. Keep on doing what you're doing - it seems to be working.
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month long constipation and headaches r caused by liver not functioning at peak resulting,constipation and headaches and most probably cough bouts too.it is caused by acidic enviornment in body. fresh green juices and fruit juices regularly r non toxic ways to alleviate this problem.
black tea with honey early in the morning on empty stomach is another option to keep liver and kidney function uptodate against pml barrages
Thanks for sharing. My Dad has been diagnosed with PML and while he does not have AIDS/HIV no one else seems to know how to cope with this disease. I am wondering if any AIDS/HIV treatments could be tried with him. I appreciate any thoughts on this.
thank you, your words give our family, much hope , also all the comments are so helpful . we don't feel like we just swinging in the dark now.
Your story is very inspirational. I would love to know your treatment so we can try the same treatment on my brother. My brother does have AIDS and PML. You story provides us with hope. We would love to duplicate your efforts on my brother. Any and all information on your treatment would be appreicate.
Thanks so much!
Thanks so much for your words, I'm currently writing you from the bedroom in which I'm taking care of my husband. He can't talk, walk, move or eat. But now I think there's a chance I'll keep fighting, and help him to fight.
He was diagnised three months ago, previously I had no idea he was positive, and for reasons I still don't know, he had decided not to tell me anything about it nor taking any meds. When I knew about his status, he had already developed AIDS\pml and it took only some days till He could not say a word to me anymore. So I've feeling quite lonely in the whole story, staying awake many nights by my sleeping charming prince and not knowing what to expect.
I guess I still don't know what's going to happen, and I still have too many questions to answer.
Sometimes I feel I'm undergoing the fight he decided not to fight. I am currently in charge of him taking the ARV, and we are trying a therapy with Ozone.
By the way, I'm still negative, and I don't really know if He understood me when I told him. Actually I cannot know if he cares since he didn't care when he was alright.
Thank you ROn for making me see it's worth the effort