Episode 78: Happy Thanksgiving to Sabine

Dear, Sabine--

Amy Winehouse's "Will You Still Love Me Tomorrow?" just came on and, of course, I'm immediately in your flat in Peuderhausen as you lie in your hospital bed in the living room. Gaby's there, and one or two of the ladies from Lithuania. The candles are glowing, each of the tiny wooden angel candle holders your mother collected are lit, the windowsills alight with them. The lyrics now say, "Will You Still Be Here Tomorrow," and you are, if not in this dimension, than in some other, if only if it's in my heart and mind as I wish with every cell of my body that I could hold you and talk to you again.I can't do the former, but I can do the latter.

This is so similar to how we corresponded for years, speaking as we did then into our little cassette tape recorders, sharing the details of our days most nights before a bed, a ten-year conversation that started in single cassettes sent to one another across the ocean and then to packages of four or six cassettes at a time. I've never had a closer friend, because something inhibiting disappears when sharing like this, over time and space, in our most intimate moments when alone and reflecting on the most important aspects of our inner and outer worlds.

The things we loved. The parents who raised us, who lived and  who each died in the time when knew each other. In fact, I think it was the death of, first, my father, and four years later my mother during those years we worked together in our DC lawfirm, that first drew us so close together. And then, in the latter end of our cassettes, your agony as you watched your beloved father die, and then drew closer to your mother, with whom you'd always had a problematic relationship, had to move from your childhood home into a retirement place where she did thrive for some time but then died with you in the bed beside her.

And your love affair with a little baby you'd come to rock and bottle-feed in the Lithuanian orphanage where you did this with so many others but, especially, this one, who was always and then officially became your daughter, the child whose name means "Life" who, just a few days before you left this dimension, whatever it is, and moved on to the next, whatever that is, first knew that you were leaving us. But you'd arranged for her to stay in the loving family she'd always known, and from the photos I've seen she's grown into a thriving, lovely young woman who looks so much like you it's uncanny.

Episode 77: Clarity After Hep C Cure

Harvoni kicked Hepatitis C's ass. By the time of mid-treatment, a month and a half after starting Harvoni, there was no sign of HCV in my blood. My post-treatment lab tests gave the same result. My gastroenterologist says he has been amazed at how well his patients have done under this treatment. It's kind of a miracle.

That being said, I keep expecting to see a lawyer's spokesperson on late-night TV asking whether I took this drug and then listing all the "adverse events" (nice euphemism there) that crop up long after the treatment ends. THAT being said, I'm hopeful those effects don't show up for 20 or 30 years, just as HCV hides in one's system that long, seemingly without symptoms.

Of course, I'm an optimist, and I'm hoping taking Harvoni was safe and my cure will be permanent without such "adverse events" appearing some day.

So . . . how has being cured of Hepatitis C changed my day-to-day health?

The most phenomenal result of treatment thus far is how clear the world became once that nasty little virus had been vanquished. I can remember driving on the interstate and looking at the beautiful Appalachian mountains that drew me here and the sky behind them and thinking, "Wow. Everything is crystal clear," almost as if the world had been washed and buffed and polished and was shining again.

"My" mountains and the interstate--though not on
the clearest of days, unlike the clarity inside my
brain, now cured of Hepatitis C!
Photo by my pal Lisa Sheirer

Brain fog is a common symptom experienced by those living with Hep C. (Here's more on the symptom from HepatitisC.net--https://hepatitisc.net/living/hepatitis-c-symptoms-brain-fog/.)

After some thirty years with HCV, the virus had so clouded my brain, both in my visual perception--I was truly in a fog--and in my thinking that I sometimes thought I might have early-onset Alzheimer's. I now know that wasn't and isn't the case. Not only is my visual perception clear again but I am mentally clear as well (with the occasional senior moment nearly everyone my age--58-- experiences).

And I must say that this new clarity is a pretty awesome thing.

I have no doubt that all patients who have been cured of Hep C and its accompanying brain fog experience the same joy when clear sight and thought are restored. I know, as a person whose mental life has always been rich--if muddled and confused for the past few years--this change has given me new hope for my future. Both my livelihood and leisure time involve mental processes such as reading, writing, researching, and daydreaming (or, rather, thinking up new ideas for work projects and for writing stories and essays). The cure has returned to me a long-lost ability to focus that is so important to what I do and how I "see" myself.

I do still have foggy days, but they are few and far between--and that improvement alone is invaluable to me.

As Gary Zukov says, "The characteristics of an authentically empowered personality are humbleness, clarity, forgiveness, and love." It's difficult to have the other three--or much else--when you don't have clarity. Throughout those years when my cognition was hazy and cost me two jobs I loved, I felt neither authentic nor empowered. I felt as if I were a shell of my former self. I'm beginning to feel whole again. Authentic. Empowered. And, damn, that's nice.

I'm trying to keep my posts shorter, so I'll continue this report next time. In the meantime, here's to seeing and thinking clearly!

Episode 76: At it Again: Latest Theory: Primary Lateral Sclerosis

Well, it certainly is nice to be cured of Hepatitis C. I just hope the "cure" lasts. I will continue to be tested for the next several months ... here's crossing fingers and toes that it holds.

I'm still after the correct diagnosis of my neurodegenerative disease, especially now that the Hep C is behind me. I was told that I have a neurodegenerative disease by my local neurologist, but thus far there's no definitive answer as to whether it's multiple sclerosis or some other condition. Dr. A said he'd diagnose me with MS if I had lesions in my spinal cord, which I don't--but I do have them all through my brain. He also said I was a little "old"--mid-50's at the time--for an MS diagnosis (though late-onset MS IS a thing--and, of course, I've had mysterious hospitalizations and pregnancy troubles that may well have been due to whatever this thing is messing up my brain.)

Lest you think I'm obsessed with this brain thing, let me say that I've had a copy of Dr. A's report on his (abnormal) neurological exam of me and referral to a Johns Hopkins neurologist for over a year, but I've never opened the sealed envelope. I guess I don't really want to know. Pretty scary stuff.

At the same time, not knowing sucks. It would sure be nice to have a diagnosis so all these weird symptoms will no longer be thought to be coming from my imagination.

Some of the symptoms I'd hoped would clear up with the Hep C cure have not cleared up, and that's a bit of a bummer. A lot of a bummer, actually. For instance, the debilitating sleep disorders--idiopathic hypersomnolence, circadian rhythm disorder, sleep apnea, REM sleep disorders, and a history of hypnogogic hallucinations--are still with me. The good thing is that, when I actually AM awake, my brain is much clearer. Brain fog is a common symptom with Hep C, and I definitely suffered from that. I"m amazed when driving around how crystal clear the world looks now, and that alone is a miracle.

I'm pretty sure my sleep disorders are due to some kind of sleep-disordered breathing, but what is causing that?

Another look-see of my signs and symptoms, as well as what Dr. A has told me in my visits to him, has led me to wonder whether the problem may be something called primary lateral sclerosis. This is related to amyotrophic lateral sclerosis (ALS) of bucket-challenge/Lou Gehrig/Stephen Hawkins notoriety but does not tend to move as quickly.

One of the most obvious signs of damage in my neurological exams is hyper-reflexivity. My reflexes have always been normal in the past, but about three years ago Dr. A hit my bony right knee with a hammer and my right leg flew up so high I nearly clipped him in the chin. The reflex was so strong it sort of traveled through my body, and my left leg went halfway up, too. (When I saw Dr. Neurolobitch at Johns Hopkins, her intern who tested me first was struck by the vigor of my reflexes, telling me she wished other medical students could see them--but Dr. N, who was convinced, I can't help but think, that I was faking, downplayed this.) I know I'm not faking, and this is a sign of upper neuron disease.

Upper neuron disease can also affect balance (remember my weird fall while walking and talking at the same time--an early sign of neurodegenerative disease--a few Christmases ago? My big, fat, swollen nose when I hit the pavement beak-first?) I'm clumsy a lot. Even Honey has started making fun of me for how much I bang into things, knock things over, drop things, and generally wreak havoc wherever I go.

The disease can also affect breathing muscles and processes, which leads to weakness in skeletal muscles, and I'm pretty sure I have this in spades. I've been complaining of my exhaustion on the slightest exercise only to be foiled by incorrect or poorly executed tests. "Unless it happens in my office," my pulmonologist tells me, "it isn't happening." I contend I wasn't given the right tests, and at least one that I was given was messed up by the technician. All I know is that my breathing/stamina issues are real. I've been complaining of them since my near-respiratory-breakdown in Europe during the 2013-2014 holidays.

The disease is also known for a "sense of weakness and early fatigue," according to Singer, et al., yet generally without weakness found in neurological tests. That fits me to a T.

Upper neurons, by the way, do this:

Second-order motor neurons are upper motor neurons whose cell bodies reside primarily in the precentral gyrus or the primary motor cortex of the frontal lobe. They send fibers that directly connect to lower motor neurons in the brain stem that innervate the muscles of the face, pharynx, and larynx or to lower motor neurons in the spinal cord that innervate the limb, trunk, and respiratory muscles. (http://emedicine.medscape.com/article/1171782-overview?pa=8dH4jbWcJ9EMQ8XXBYmInAn4vTn47ZAhyNXbVN23XbpfaQjLSWefbWko3s%2FTTYy8Dc%2FQpD2oKbvJtxcVOoY35zRbGMQ7s%2F89oYHt2gMBBbM%3D)

So, I guess it's time to open that envelope and see what Dr. A said about my signs and symptoms. These, I know:

• Diffuse, periventricular white matter lesions;
• Brisk reflexes;
• History of fascilations;
• Several diagnosed sleep disorders;
• Breathing/stamina issues (as yet unverified by doctor but chronic in "real" life);
• Fairly extreme stiffness when standing up or getting up from bed;
• Potential laryngeal pharyngeal reflux--some (unverified by doctor) signs and symptoms of this disorder;
• Aphasia issues;
• Urinary urgency and incontinence (fun).

My age when these signs/symptoms really flared into something undeniable was 54, the mean age for PLS onset (Tartaglia, et al.)

I also have a history of 5th cranial (trigeminal) nerve damage. This, however, is apparently not related to primary lateral sclerosis or upper neuron disease. Lucky me, there's something else wrong with my brain.

One thing for sure, I need to bring up these issues when I next see my pulmonologist. He has cowed me into not telling him any more symptoms because he makes me feel like I have Munchausen's or some crazy malingering disorder. But I've never shown him Dr. A's neurology report. I need to open it and see what it says, and then I need to give a copy to Dr. P. 

Stay tuned, sports fans!

And the envelope says ....