Ron's POZ Blog

after 7 ½ years of being homebound by my PML/ HIV/ AIDS, in case anyone forgot!

{chuckle} – I LOVE being a bitch about my “situation” sometimes if only to remind those that haven’t the intelligence or ambition to investigate PML or just plain forgot what it is about. It was never easy; never is and never will be for me or anyone else suffering the effects of PML.

Anyway, back to driving…

I am so sure you will all tire of my excitement of “firsts” and hope you understand the novelty of all that the mini-van affords me now. I am sure it will wear off soon! But, bear with me and only imagine my constraints of the past years.

I went for a ride Sunday, just because I could and with no purpose or intent other than I could. Away I went, with the CD player or the radio going between Country Western, Pop, Rock, and Dance. (I know, I know. What a dizzy queen with such diverse taste! But, so eclectic!)

So, I went for a drive and bebopping to my tunes, headed in the direction of the wind which took me down towards Wilkes-Barre that day. I enjoyed my meandering through the odd mixture of country roads, quiet streets and 4–lane highways. I had no schedule; no place I had to be; no one suggesting – anything; a very liberating thought.

After driving for about an hour, I decided to have my dinner at a casual family restaurant. What pure joy it was just to be able to go in and order on my own again! And then I went to do some window shopping at a local mall, and while in the parking lot of the mall, played with the options of my mini-van like a wide-eyed child trying everything again. I really hadn’t had the reasons to use any of it since my first day of getting the van, so I tinkered with all the options. I didn’t buy anything, but it was so nice to zip up and down the mall and go into stores to browse.

I decided to try something a bit more exciting, so headed for a casino nearby. It has only slots because in Pennsylvania, it is the only legal form allowed right now in the vicinity of a race track. I quickly decided against remaining due to the large number of people milling about and the number of vehicles in the parking lot. I was sure it would be crowded – Sundays are not good! Another day would be better, I thought.

I continued my trek to all kinds of various local landmarks from my teens and early 20s that jogged my memories of back roads and shortcuts for another 2 hours before heading home.

All I can say is, Ahhh!

My first month back behind a wheel has allowed me to go shopping for whatever I wanted, whenever I wanted. Go to a restaurant – drive-thru or sit down. Actually, I can go wherever my mood or inkling leads me now. I was thrilled to go to T.G.I. Fridays!!

I have also started my water therapy again at the rehab center here which will last until the second week of September. I enjoy my time in the pool and feel like it is helping me even in my land therapies here at home. I decided to only go to the rehab center for water therapy this time, since I do so much land therapy at home. I thought it would be redundant especially since they cannot teach me anything new. In fact, I astound them at what I can do physically and they haven’t a clue what to try anyway. I have no major hunks to report of at the pool right now! But, one semi-cute guy does have big feet!

I have also hit 1000 miles on the odometer. I even vacuumed the floor, and mats – not much; mainly some dog hair and cut grass tracked in by my Jazzy. Oh, there were a few sesame seeds from my drive-thru adventures too! I even washed it this weekend. I have my extendable hand-held car mop. I can easily stand up at my Jazzy while washing the roof or the hood with my extendable brush/ mop. The van is not very dirty; but I feel better though.

I have been doing my best to get used to the van and have started to plan activities for September – also my favorite weather of the year. I am going to one of my alma mater’s home football games for sure and one of the big fairs in the area. I have been researching upcoming concerts, but nothing that tickles my fancy yet. I have been toying with the idea of going to the movies too. I am so looking forward to my road trip down to New Hope, PA. It’s about 2 ½ hours south of here and a far northeastern suburb of Philadelphia. New Hope is one of those quaint pre-Revolutionary towns now full of art, antique and clothing shops frequented by gays and very cool straights. One of my best friends lives there, so it is doubly ideal to my mind’s eye.

I was totally taken aback one day by a comment by one of my sisters.

“Don’t you think you would have progressed further by now?”

GRRRRRRRRRRRRR, I said under my breath.

I explained to her that I am sure I would have if I spent my entire day doing nothing but therapies and exercises and for what – stop living life and trying to enjoy it? I am sure the daily mundane chores I do like showering, cooking, cleaning and even yard work or playing with the dogs continue to work muscles without conscience effort helping my co-ordination and control. I reminded her that my totals of exercise and therapy is 3 ½ hours Monday through Friday and maybe 1 ½ hours on Saturday and Sunday and before recently, I spent even more time on exercises to get muscles in shape over the past 5 years. Now, I spend more time working on my balance, which is my biggest obstacle now. It won’t matter how toned I am, my legs, etc. if my balance is off. I still do all the things for my legs, arms and core to keep up the tone, but my balance is the concern now. It was the main damage of my PML – loss of balance and co-ordination, so at the depths of the PML, I was bedridden and basically helpless.

So, right now, I can’t walk. BUT, I spend at least 45 minutes Monday through Friday on my parallel bars focusing on balance topping it off with at least 4 or 5 free-walks the length of the bars. And, then I do 100 to 200 feet with my rolling walker. That is also the driving force behind my water therapy every Tuesday and Thursday. I walk the length of the pool – 4 times and with each lap – no breaks. Which is good and I only have a floating tube (picture a 4 foot long ziti) to keep my balance.

I hope to walk someday soon. I haven’t given up on my quest and am even more driven to begin walking again since getting the mini-van. I have regained a lot of independence when I got the van and am VERY grateful for everything it affords me to do now. Walking is my goal, with or without the van. So now, I am able to shift more focus on my balance and making my co-ordination even smoother. But, again, muscle strength means excellent co-ordination, so I continue to do the exercises I need to maintain and build.

I think it funny when people are amazed that I make it a point to make sure all my exercises and therapies are done for the day BEFORE I go driving anywhere.

Oh, well, time to get back to my exercises…