I
hate writing about my health all the time, but I guess I want a record of what I've gone through in case it helps anyone else. Maybe it will help my kids someday to understand why I have had so little energy and have fallen so far in my life, from a promising career as a college English professor some seven years ago to my current status as poverty-stricken, disabled fifty-something slug.
I've tended to downplay my hepatitis C since being diagnosed early in the 2000s after giving blood for the very first time. I don't like needles, so I'd avoided giving blood my whole life, but while teaching college-level classes in the local high school I was talked into donating by my over-achieving kids. I wanted to help them reach their goals as Red Cross volunteers. And
I subsequently received a letter from the Red Cross telling me my blood had been tested two or three times, and it was positive for Hepatitis C.
Sometime between 1979 and 1983, the years my boys were born, I was given two D and Cs (procedures to scrape out the uterus) at Columbia Hospital for Women in Washington, DC. I kept bleeding heavily after the birth of my first baby, so my OB/GYN suggested the procedure. The first one didn't work, so they did it again.
I was given two pints of blood in a transfusion during one of the procedures. This was the pre-AIDS era, and Hep C didn't even have a name yet (and wouldn't until 1989). Blood was not screened then, and IV drug users were the most common blood donors since they could do it for money.
I had no clue that I had this disease until some two and a half decades later. And now, it has been--yikes!--close to forty years since the virus began circulating in my veins.
Thus far, my liver has proven strong. My last liver biopsy--admittedly some six or seven years ago--showed no fibrosis, the first step toward cirrhosis and potentially liver cancer that can happen due to infection with Hep C, or, rather, HCV, as the virus is known.
My genotype (1A) is the most difficult to cure. In the past, treatment required 49 or so weeks (nearly a year) of interferon injections as well as daily oral doses of ribaviron. Interferon has nasty, sometimes debilitating side effects. Not only that--the grueling treatment is only effective in about 50 percent of those with my genotype. Pretty lousy odds when having to potentially give up a year of one's life. As I have been my sole means of support since my husband and I split in 1985, I never felt I could afford the time off to be treated.
I also hoped that treatments would improve and, lucky me, that has happened.
There are now several options to treat my genotype with oral medications over six to eight weeks, and the cure rate is 98-99 percent.
Just in time. And, truly, I am lucky. I now have a chance to feel better. I realize my trying to find the cause of my problems may all have been simplified if I'd just attributed them to hepatitis C. The thing is,
the HCV virus's neurotoxicity has only recently been recognized.
The eminent Dr. A., my local neurologist, told me c. 2013 that
I have some sort of neurodegenerative disease, but he couldn't say for sure which one it might be. "If you had white matter disease in your cervical spine," he told me, "I would say you have MS." I don't, though. I just
have white matter lesions all through my brain. What are they? Could they be the
Lewy bodies of Parkinson's?
Not too long ago, I wrote about the possibility that my problems could be due to Parkinson's Disease. What had struck me most about an interview with
Linda Ronstadt, the songbird of my youth, was her saying that
she totally lacked motivation to do much of anything other than chill out and read books. Those weren't her exact words, but the symptom struck me as so very similar to the ones I've endured for the past five years or so. (See
Episode 64.)
It's as if a switch just won't turn on when I need to shift gears (sorry if that's a mixed metaphor, though they are both mechanical :) ). I get stuck on one mode, whether that be lying on the couch watching TV when I need to sleep, or sleeping itself. Although I dearly love my friends and the times I've spent out on the town with them, I rarely feel motivated to go out with them these days. Even when I
plan an evening out, I have a hard time actually leaving the house.
It just seems monumentally difficult to get up, take a shower, get dressed, and go out. I can't tell you how many times during the holidays I let my friends down when I couldn't get together or go to a party with them. And these are the best friends on the planet. I
have to be sick if I can't muster up the energy to hang out with them.
I rarely shower or even change clothes nowadays. I know this sounds disgusting. And, no, I'm not depressed. It's just so damned
exhausting. And I'm lucky; I don't get "BO." I've confirmed this with Honey.
And so the idea of washing my hair, holding my arms up long enough to do that, just wears me out. I've come out of the shower faint and out of breath, with barely the strength to dry off with a towel. The idea of having to do all that gets harder and harder as time goes by, so most of the time I just don't bother.
Rapid Eye Movement (REM) Sleep Disorder is another early Parkinson's symptom that I've experienced over the past year. I recounted those experiences in my previous PD post. Fortunately, the episodes stopped happening after that until one very recently when
I actually awoke punching myself in the face! The dream made sense at the time, but I can't remember now what it was.
A few other problems I have that could be attributed to early Parkinson's: increasing episodes of anomic
aphasia and
paraphasia,
difficulty hand writing anything,
stiffness and slow movements, frequently feeling faint upon standing,
a fall and concussion two years ago while walking and talking at the same time--strangely enough, this is a complicated task for the human body, and doing so with Parkinson's or other brain disorders may lead one to fall, as I did (see
"Talking While Walking: Cognitive Loading and Injurious Falls in Parkinson's Disease," among others). A few of my other symptoms include
heat intolerance, increasingly stooped posture (so unattractive!), recent onset of
chronic constipation, urinary urgency and incontinence, and more.
Every one of these
cognitive changes listed on the
Northwest Parkinson's Association site applies to me BIGTIME:
- Slowed thinking speed;
- Word finding difficulty;
- Trouble with multitasking;
- Difficulty organizing complex tasks, steps, or instructions;
- Memory problems.
Added to that list is frequent errors in writing that I frequently do not catch--this is a big change for me, an uber-accurate typist and compulsive proofreader in my former life ... though I hope I'm still the
"word sorceress" Honey called me recently (I love it!).
More often than not these days, I'll begin talking and my words will jumble up--as if my mouth has not yet caught up to my brain, or vice versa. A previous episode of
The Mary Dell is devoted to the frequently humorous and always fascinating
word scrambles I've come out with lately.
All of these signs and symptoms point to a degenerating brain--quite the scary thing for a gal always rather smug about the quality of hers.
On the other hand, the
diagnostic criteria for Parkinson's includes four cardinal signs, and I can't say that these clearly apply to my muscle and balance symptoms, so perhaps this STILL doesn't explain my neurodegeneration--and none of the possibilities are exactly keen.
Last month, I finally met with my gastroenterologist, who will look into treating my Hep C after he does a few other tests relating to my digestive problems--specifically, a colonoscopy in early February. He informs me, however, that
insurance companies will not pay for treatment unless one is showing signs of liver degeneration.
In fact, I've been having some of those signs recently. My
liver enzymes were elevated for the first time recently. My digestive problems have increased. And
bile was found in my urine when it was tested recently for a urinary tract infection--and
that's a sign of liver problems.
Now also, lucky me, I say ironically, because it really is true--I can show even more potential deterioration from the HCV virus, thanks to Medicine's recently linking Hep C to Parkinson's. Yes. Lucky, lucky me. And I will feel lucky indeed if, in fact, the treatment turns my life around again, at least enough that
I can enjoy some reasonably healthy years left with my Honey and my kids, not to mention the chance to reach my hopes and dreams. I've thought for some time I've got something degenerative that will take me away sooner than should be--but
maybe, just maybe, treatment will stop that process in its tracks and give me some good years left on this planet.
Here are two separate studies that show "significant" evidence linking Hep C and Parkinson's:
Hepatitis C Virus: A Risk Factor for Parkinson's. "In conclusion, our study demonstrated a significantly positive epidemiological association between HCV infection and PD and corroborated the dopaminergic toxicity of HCV similar to that of MPP(+)."
Hepatitis C Virus as a Risk Factor for Parkinson Disease: A Nationwide Cohort Study. "We conducted a large nationwide population-based study and found that patients with HCV exhibit a significantly increased risk of developing PD."
Will curing the hepatitis C arrest the Parkinson's Disease? Whether or not I end up having PD, I guess only time will tell for those who do--I see that a clinical trial on this very question is being conducted. No matter what, getting rid of a damaging virus circulating in the blood has to be a good thing.
