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Wednesday, February 28, 2007

Home Alone (Sort Of)

With my parents out of town this week, I've had the house to myself. Well, not completely. With nurses coming and going at seemingly all hours and our loud-mouthed dachshund, Zoe (pictured at right) on the prowl, it is rather impossible to ever be alone!

Because insurance only pays for 16 hours of nursing care per day, it is an expensive proposition whenever my parents go on vacation, as they must pay out-of-pocket for eight hours of nursing care for me each day. Although respite care hours are available to the parents of children with serious disabilities in Pennsylvania, there is no program of which I am aware when it comes to adults like me. But parents like mine deserve a break, too. (And trust me, while my parents are great, I also need a break from them every now and then!)

So far, I have enjoyed my "vacation." It has given me the opportunity to entertain friends and family -- and to see every possible photograph from my aunt's recent trip to Cambodia! And with the assistance of my nurses, I've had a chance to dabble in the kitchen. We haven't burned down the house yet, which is always a plus!

But all the fun comes to an end late tomorrow night, when my parents return. After they're done calming Zoe, maybe they'll say hello to me...

Thursday, February 22, 2007

Heart of the Matter

Winter is a difficult time of year for me. My body doesn't seem to respond well to the cold temperatures and I spend weeks at a time inside the house. (You know something's not quite right when I look forward to outings to the doctor) The way I feel physically, I spend more time thinking about my mortality.

But I got some encouraging news today from my cardiologist: my annual echocardiogram indicated that my heart function had not declined over the past year and may have even improved a tiny bit. I was surprised to hear that this is the case, but I'm not about to argue with good news.

The reality remains that I still have a weak heart and something fatal could always occur suddenly -- the doctor has told me more than once, "You'll be okay until you're not okay" And while my heart function may be better, my heart will inevitably continue to weaken. Still, the doctor also reminded me that I'm no longer in heart failure. He couldn't say that 4 1/2 years ago when I first rolled into his office with a heart function of nine percent.

With excellent medical care and lots of luck, we've managed to turn things around. I'll turn 29 soon. And that's all the evidence I need.

Wednesday, February 21, 2007

A Star is Born

In case you missed my TV interviews today, here they are for your viewing pleasure, the first of which took place today in-studio, LIVE!

When TV calls, you had better be ready to answer the bell. Well, it did and I was!

My big plans for today included going to a copy center to order bound copies of my book manuscript and watching the my recently-taped interview air on TV.

That all changed a couple of hours before the interview was to air, when my mother received a phone call from the TV station, asking if I could get down to the studio in two hours for a LIVE interview! After my mother frantically tracked me down, she and my nurse rushed to get me ready. In record time, they got me in and out of the bathroom, dressed and shaved, washed my hair, and gave me my medicines. My father sped us to the studio. The traffic even seemed to cooperate!

With the excitement, there was no time to be nervous. Before I knew it, I was on stage being interviewed. Everything seemed to slow down and the words just came to me as I answered each question as if on cue.

It was a great experience and hopefully, it will generate some interest in my book. But it wouldn't have happened without some great people behind me. Thanks, guys!

Monday, February 19, 2007



TUESDAY (2/20) BETWEEN 4 & 5 PM, NBC-10 (Philadelphia)

For more details, please see entry from 2/13

(TV news is not an exact science, so this could change, but I have been told that this should happen...)

Tuesday, February 13, 2007

Blast From the Past

When researchers identified the gene responsible for Duchenne's in 1985, NBC 10 medical reporter Cherie Bank interviewed yours truly, then 7 1/2 years old and with missing teeth! I was filmed walking (with difficulty) down the stairs and playing the piano with delight, as Ms. Bank looked on.

Fast-forward more than 20 years and guess who came to interview me about my life -- and my book? None other than Cherie Bank (pictured above)!

With my piano-playing days long over (trust me, I was no virtuoso), I instead showed off my voice-activated computer and read aloud a segment of my book. Though not nearly as cute as I was back in '85, I still have the same smile and I'm just as talkative!

I'm not sure when the interview will air, but as soon as I know, I will post an announcement here. So please, stay tuned to Winheld's World...

Saturday, February 10, 2007

Still Tickin'

Two years ago today, I had my pacemaker implanted. It was a time of great uncertainty in my life. Although the way my heart felt was scary, I was unsure whether I wanted to go forward with the procedure. I was not doing anything productive then, unless you count watching TV as productive! What was the point of going on?

But I decided to take a chance and I'm sure glad that I did. I started my job handling communications for an IT accessbility consulting firm and later that year, I began writing my autobiography. I've been busy ever since.

Who knows what the future holds? All I know is that I probably would not be here today without that tiny device in my chest.

Now it's time to find a publisher!!!

Friday, February 09, 2007

Social Insecurity, Part II

Winheld's World was not a very happy place this morning. The other day, I sent in the money I owed to Uncle Sam (see my post from 1/10/07) So I was less than pleased this morning to open my mail and find a letter from the Social Security Administration, telling me that my disability payments were being reduced because I had not paid them back.

But when I was first was notified that I owed money to the government, I was told that I had 60 days to respond before they cut my payments. When I called to find out why I had received this letter so soon, I had a riveting conversation with a Social Security representative -- we'll call him Pencil-Pushing Bureaucrat (PPB)-- the highlights of which follows:

Me: I've just sent my attorney the check to pay back what I owe to Social Security and he's going to send it in along with the form--
PPB: What form? Do you mean the appeal form?
Me: I'm not sure. I guess so.
PPB: If you're paying back the money, then why are you appealing?
Me: I'm not appealing, but I still have to fill out the form and send it with the check.
PPB: No you don't.
Me: Um, I'm looking at it right now. It has option to check to pay back the money.
PPB: You don't have to send in the form unless you're appealing. Who told you that?
Me: My attorney. Look, it's not like I would lie about something like this.
PPB: (with heavy sarcasm) Oh, then I'm the one that's lying! (hangs up)
Me: What the hell -- You #$%@&&!

Fortunately, I reached another representative on a subsequent phone call. She told me that it would probably take three to four weeks to process my check, so it would not be in time to stop them from temporarily reducing my payments. So much for 60 days!

And that, my friends, is your tax dollars at work. If you live outside of the U.S. and are reading this, I can only hope you don't have to deal with such ridiculous bureaucracy.

Thursday, February 08, 2007

Rejected...Not Dejected

Well, it was bound to happen sooner or later. I received the first rejection of my still untitled (a little help here please, folks?) book from a local publisher. They did not even want to look at my manuscript. It was surprising only in the sense that this particular publisher has put out several books on topics very similar to mine.

But I was actually somewhat happy! The first rejection is out of the way. And you know what? It wasn't so bad. As one of my friends put it, "Now you are a true author!"

There are plenty of other fish in the ocean, although the ocean seems to be controlled by three or four major conglomerates. I just need to find the right fish, er, publisher. It won't be easy, and it may take a while, but I'm confident that my book is at least worthy of a look by potential publishers.

I'll just need to have my nurse cross my fingers for me. Still, it's hard for me to wait, considering the life expectancy issue staring me in the face. So I'm pulling out all the stops, trying every possible contact. I have at least one promising lead so far.

In the meantime, please keep your fingers crossed, too. And if you have any contacts in the publishing world -- even if it's the friend of a friend of a friend's second cousin one removed's daughter -- please let me know. Title suggestions would also be great...

Monday, February 05, 2007

Meeting of the Minds

After years of receiving invitations and being unable to attend due to scheduling conflicts, the stars finally aligned and I was able to make it to the quarterly advisory luncheon held by my attendant care services provider, the Jewish Employment Vocational Services (JEVS).

Pictured next to me are (from left) Ann Doloff, of the Pennsylvania Initiative for Assistive Technology (PIAT); Barbara Cohen, Attendant Care Advisory Committee Chairperson; and my attendant, Monica.

In addition to brief presentations by various program administrators, Ms. Doloff, the invited guest speaker, spoke to us about PIAT's lending library, which provides people with disabilities the opportunity to borrow and evaluate assistive technology items -- special telephones, mouse devices for the computer, page-turners, adaptive software, etc.

I have been a "consumer" of attendant care services for over 10 years now (I have written about the joys and horrors of attendant care in my autobiography). These services are a vital part of my daily life. Although I require skilled nursing care, insurance only pays for 16 hours of nursing per day. My attendants help to fill the gaps in my nursing coverage so I don't have to depend on my parents as much.

They help me with very important tasks such as getting in and out of bed, bathing, and toileting. Many of my attendants have been certified nursing assistants (CNAs), but friends, neighbors, relatives, or students can be paid as attendants. The particular program in which I'm enrolled through JEVS is free of charge, funded by the Commonwealth of Pennsylvania.

The luncheon was informative and gave me the opportunity to meet some other consumers and attendants, as well as administrators whose names I recognized from attendant care program correspondence over the years, but whom I had never met before. It was a lot more pleasant of an experience than the 20° weather outside. The grilled salmon and roasted potatoes also helped!

If the calendar gods cooperate, I plan to attend future luncheons. Hopefully, they won't fall on the coldest day of the year, like today.

Saturday, February 03, 2007

An Intimate Decision

When I launched my blog in September, my goal was to talk about life with the disease, leaving no topic untouched, regardless of how uncomfortable it might be. So there was no way that I could ignore an article I found describing how Nick Wallis (left), a 22-year-old with Duchenne's living in the UK, hired a prostitute so that he could experience sexual intercourse before he dies.

An interesting note to the story is the fact that the encounter was arranged with the support of Sister Frances Dominica, a nun who runs Helen and Douglas House, a hospice facility for young adults, where Mr. Wallis often spends time.

Mr. Wallis, who wrote, in his own words, that he had always hoped that sex "would be just one part of a close relationship," had come to the conclusion that it was unlikely to happen. While he described the experience as "satisfactory," and was glad to have had the "tenacity" to go through with it, he also characterized it as "emotionally unfulfilling."

And that is why I would not consider something like this. I already know that I would feel the same way because I know how I am wired. Sex, in and of itself, has little meaning to me. Like Mr. Wallis, I have always wanted to be in a true relationship. It is highly unlikely that will ever happen for me, but that's how life goes. You don't always get to achieve all of your goals.

But sex is not going to fulfill this desire. With the slim probability that I will be in a relationship, I have chosen to pour my energy into my work, into writing my book and making a difference for those whose lives are affected by Duchenne's.

That said, I have great respect for Mr. Wallis' decision. This was something he wanted to do -- something he had every right to do -- and he did it. I don't see any reason why paying for sex is illegal; it harms no one (unless we're talking about sexual slavery). All parties involved do so of their own volition. Furthermore, it is commendable that he has publicly discussed his decision because it raises the subject of sexuality and disability, which is not addressed nearly enough.

Bloggers, such as The English Courtesan, have expressed their support for Mr. Wallis, while others, such as Pastor Tom have been critical. While the pastor may have a point about the "idolatry" of sex in our society, why should Mr. Wallis, by virtue of his disease, be denied the opportunity to do something that everyone else can do? What Sister Frances did to support Mr. Wallis (read her explanation here) demonstrates that she has a true understanding of her role as a clergy member.

Nick Wallis' decision is not the same as mine. But time and time again, I would defend his right to make that decision.

Thursday, February 01, 2007

In Search of a Title

Wow! I can't believe it has been almost a month since my last post. Over the last few weeks, I've been busy revising my autobiography. Late last Wednesday night, I finally finished! The only thing missing is a title. You would think that if I was creative enough to write a 200+ page book, I could think of a few lousy words to stick on the cover. No such luck.

Nevertheless, things are getting pretty exciting. Right now, the goal is to generate some publicity for my book in order to interest publishers in taking on my project. A television appearance is in the works. I will post an announcement to Winheld's World when that happens.

Writing this book has been such a long journey. People have told me that 14 months is actually pretty good, but I thought I would have been done six months ago! Still, I'm very satisfied that I set out to undertake a project of this magnitude and I finished it. Whether it's worthy of publication, I have no way of knowing. I just hope that if a company decides to publish it, I'll be here to see that day. There's a much better chance that I will see that day before I will ever see a Philadelphia sports team win the championship!

But the book is not about me. Sure, I wrote it and I will take the credit for it. I'll enjoy all the attention it brings me. At the end of day, however, I hope that it makes a difference for other people with Duchenne's. I want to tell "our" story because it is a story that needs to be told. Life with the disease is hardly ideal -- no one would choose to live like this -- but it can still be good.

I have had my doubts about that from time to time. But here I am, about to do something very special. So while it is absolutely freezing outside, the local sports franchises stink, and my body sometimes feels like it's falling apart, life is good.

Any title suggestions? Bring 'em on...