Hi, Dr. Young!
A bit late, I saw your request looking for stories about people living and surviving with PML. Well, better late than never, as they say, so here's mine:
I was diagnosed with full blown AIDS and PML in December of 2004. My CD4 was 98 and my viral load...well, I never received an exact number, but let's just say it was staggering. I had little to no control over motor functions, constant tremors, I could not keep my balance or walk, and the month between mid-Dec and mid-Jan is a complete blank for me, apparantly lost in a haze of complete dementia. When I regained "consciousness", I learned the dire nature of my prognosis, and I was basically waiting to die. However, I guess I did not abandon all hope, since I did stick religiously to my regimen of Truvada, Reyataz and Norvir, once a day (Dr. Jon Kaiser's K-Pax vitamins were added later)
So, a little more than a year later, my CD4 is over 500 (awaiting latest results!) and I have been undetectable since August. My last MRI showed no significant traces of PML. While I do have some minor trouble with short term memory occassionally, I have been symptom free since February.
In fact, almost a year to the date of my diagnosis, I made my Carnegie Hall singing debut as a soloist; a feat that still brings me to tears when I weigh how very badly off I was compared to where I am now. Motor skills have returned completely: as it turns out, I'm teaching an advanced tap dance class this afternoon!
So, yes, apparantly there is now life after PML, or at least a helluva lot more of it than I would ever have expected.
Sometimes it is overwhelming when I realize how fortunate I've been with just a few pills once a day, when so many have died so horribly and so recently. But then I realize the enormity of the gift that I've been given, and I feel blessed.
So, I'm hoping that someone who's scared and desperate out there reads this and sees that it is possible not only to survive after PML, but to THRIVE, and make the best use of the second chance some of us, hopefully all of us, have been given.
Granted, it's only been a year for me, and anything can happen. But, hey! It's been ONE AMAZING YEAR, and I am eternally grateful. Every additional day is like icing on an exceptionally delicious cake!
Thanks for posting-- never too late, nor unwelcomed to hear of positive results. Your's is particularly heartwarming, especially to hear of your Carnegie Hall event. I'm certain that the many PML posters will find your experiences uplifting and hope filling.
Say, let me (or us) know when your next performance is. I'd love to be there.
With best wishes, thanks. BY