I am trying, but the blog will note even allow me to respond to anyone. Working on it. I say, Get a horse.
I am trying, but the blog will note even allow me to respond to anyone. Working on it. I say, Get a horse.
The Daily Mail called ocrelizumab, “A Huge Breakthrough Drug” for Progressive Multiple Sclerosis, adding the claim it was a “game changer.” Where have I heard that before? When Biogen was ready to turn Antigren loose on the market, their PR machine went to work and elevated patient expectations to dizzying heights. Antigren became Tysabri, knocked off a few MS patients and was yanked off the market. Tysabri was then allowed back with no fix, only a bolder warning.
I do not believe anything I read in the popular press about new wonder drugs. I asked a few MS docs about Ocrelizumab and was told it is basically Rituximab. I did a few rounds of that drug with no result. Why would I have high hopes for the new stuff, especially when I have SPMS, not the real target, PPMS? The press lumps all progressive M together.
The trial results did sound promising. Patients with PPMS need hope and have been surviving in their no-therapy ghetto for too long. I wish them well. I just worry about news-hype. Too often newspapers are sold with stories that overstate. If a drug sounds too good to be true, Maybe it is.
George Bailey yells at Uncle Billy in It’s a wonderful Life, Hollywood’s classic story that defines the holiday spirit. “Where’s that money, you silly stupid old fool? George demands darkly. “Where’s that money? Do you realize what this means? It means bankruptcy and scandal. That’s what it means.”
hese are familiar terms. Missing in this holiday season and maybe lost for a long time is the sound of laughter and jingle bells in the distance. The uncomplicated joy of season, little kids on skates, bright eyes that light the sky seem to go unnoticed. Something is wrong, different since November.
Holidays are hard. That is not new. We tend to use these joyous days in a strange way, to measure our lives against expectations, where we are versus where we wish to be. Disappointment comes too easily. Whatever our faith, gratitude for what e have slips beneath fast moving fear. Our ability and willingness to put care away, if only briefly, and celebrate what truly is ours seems to be missing.
Uncertainty may hang over us for a long time to come. How sad that we might just sacrifice these joyous weeks because we no longer know how to let go and be happy. We only worry. Ask any merchant fighting for another year.
I see the world differently because my reference points are not the same. I routinely turn to those who sail directly into the wind, always at risk of going nowhere and even losing it all. They know what matters, what to care about or just move to the back of their minds.
The chronically ill have no illusions. Nearly half the population know the fragility of life and appreciate what we are up against. The physically threatened play for high stakes and are the calmest people I know. We do not sweat the small stuff.
If you believe health is life’s most precious gift, go to one who does not know if he or she will sit at the table with those they love next year. The sick may have learned to live in the moment, in ways few others understand. We have no choice. We have nowhere else to go, no matter who or where we are.
Life is precious. The sick understand as well as anyone. Nothing lasts forever. We have figured that out. What is gone in my life, even with all the uncertainty and hardship, helps me focus on what is still there. I do keep learning, as do others around me.
My grown children know life is unfair, and they cherish what they have. My kids see illness in the family. May these young people never lose what they have figured out around the kitchen table, that others in the world need help. These kids know they are not the center of the universe.
We, the sick, do not feel sorry for ourselves. Carrying around self-pity is a terrible way to live. The load is large, the road long.
Every day I can struggle down subway steps is another day I can live on my terms. I am grateful. Each week I can do for myself is a gift for which I will exchange any necktie. In It’s a Wonderful Life, George Bailey doubts his life matters, and he disappears. His wife and children convinces George hew is wrong. George is not as powerless as he thought. Neither are we. We have a lot to live for and much to do. We need to stand straight and kiss somebody. We should smile, wish someone well and get on with it.
I look forward to Thanksgiving. I like the holiday. I am a New Englander, so my positive attitude makes sense, for as long as it lasts. Family, friends and food. Who would have trouble with those? Two of our children are heading home. Seattle is a bit far for a turkey dinner. A wonderful energy will return to our usually empty house.
As always, ill health is the unseen guest at the table. Actually, my physical flaws are seen, even obvious. But nobody seems to notice anymore. The limp and slurring, clumsiness and fatigue are just part of the landscape. And then there is the matter of giving thanks.
To each his/her own, I say. I am pleased I am still on my feet, that I have a life outside the house. I am in the homestretch on the book. The ax falls early next year. Most of all, I an grateful I can laugh and love and do not take myjourney too seriously. May you live in interesting times is either Chinese best wishes or a curse. I will leave that in the eye of the beholder.
Lastly, there is you. I am a lucky guy to have all of you, or whomever is left after I jumped off my moving train. I will be back by March. Until then, happy holidays.
I know the complicated emotional response to a devastating neurological condition passed down in a family. I am in the third generation struck by MS in my family. I understand the fear and the guilt that do not go away.
It was with special interest that I read in washingtonpost.com Carl Luepker’s account of the neuro-nightmare that hit him and now his son, Liam. Carl lives with Dystonia, a painful neurological condition. “For the past 35 years, a relentless neurological disorder has taken over my body, causing often-painful muscle spasms that make it hard for me to walk and write and that cause my speech to be garbled enough that people often can’t understand me.”
Liam inherited the gene and is facing the same grueling ordeal. “As a parent, you hope that your child’s life will follow an upward trend, one of emotional and physical growth toward an adulthood of wide-open possibilities where they can explore the world and challenge themselves emotionally and physically.”
Everyone in the family shares the disease. Lives change. Emotions are on edge because these diseases are relentless. And we see the symbols of sickness every day. “My heart breaks when I see his foot brace lined up with our family shoes in the front hall. He wears it now to deal with the creeping effects of the condition. Just as with me, his symptoms began to show at age 10.”
I cannot imagine. I was twenty-five, an adult when MS blindsided me. How does a young kid process the life sentence that has been pronounced? That is so young to learn the tricks it takes to live a halfway normal life. “His symptoms — his falls, his need to hop at the end of the day because of muscle fatigue and cramping — will continue to worsen.”
Welcome to an unfair world, Liam. None of us asked for this.
According to SCIENTIFIC AMERICAN, “Eighty percent of the human immune system resides in the gastrointestinal tract. Alongside it are the trillions of symbiotic bacteria, fungi and other single-celled organisms that make up our guts’ microbiomes. Normally everyone wins: The microorganisms benefit from a home and a steady food supply; we enjoy the essential assistance they provide in various metabolic and digestive functions.”
I keep hearing about this, anecdotal data from casual new aquatences. Not the stuff of science. Those of us who are chronic patients should know the value of big ears and an open mind. You may have heard about this yourself. Fecal microbiota transplantation (FMT), commonly known as fecal transplantation, consists of transplanting microbes from the stool of a healthy person to the gastrointestinal tract of a patient.
Not very tasteful, but let’s move beyond matters of taste and consider this on its merits. I know this theory is being tested at Yale and I believe at Harvard. The Internet is crowded with patient success stories that a scientist will (and should) ignore. But there is something to this idea. I would like to know what is happening. The procedure commonly is done via enema or colonoscopy. Wouldn’t you go down this road if there were a pot of gold at the end?
Two years after Richard Nixon lost the presidential election to JFK, he ran for Governor of California. He lost that race, too. At a news conference, Nixon famously said, “You’re not going to have Dick Nixon to kick around anymore.” More than fifty years later, I say, keep swinging your leg. I am not going anywhere. As with Nixon, I am not a quitter. Or was that a crook?
I am reading your responses, even as I attempt to get past Chapter Nine, quicksand by any definition. Keeping up with a blog is tough enough. A book? Forget it. Why do we do this to ourselves? W. Somerset Maugham wrote voluminous short stories, many set in the South Seas. They featured Americans or, more commonly, Europeans, who had opted out and chosen lives of excess in beach communities. I have spent time with these stories, wondering, where did I go wrong? I have no answers.
My problem with the fantasy is that heat kills me. This summer has been oppressive. A normal summer combines with climate change, and, voila, dust off the wheelchair. I barely can walk. This time summer is bad, really bad. Mr. Maugham, you are in danger of losing your audience. Spend time outdoors, then try to read. Concentrate. Write. Dream on.
Nosophobia is a mew word for me. I stumbled on nosophobia while aimlessly trolling around the Internet. Nosophobia is the irrational fear of contracting a disease. It applies to specific illnesses but can be used more broadly. I like exploring the world of words. This word gave me pause.
I have no particular fear of collecting diseases, though I think I have more than my share. Nophobia seems to be interchangeable with hypochondria. We all know those people. I find it interesting that we get used to what we’ve got. Futures are uncertain, but we know what we are up against. Certainly, we do not know what lays in wait for us around the bend, but our tolerance for ambiguity ripens.
I just do not have the time to obsess on what might happen. Do you? We have what we have. Nothing is going to change that. Human beings do have the marvelous ability to adapt and adjust. Maybe that is Darwinian. Whatever. There are enough real challenges to keep us busy.
I better not get another disease.
I cannot complain. No one has done me wrong. I have loved tending to the blog. But tend you must. It cannot survive and flourish on its own. It comes down to choices. I have been musing about hope for a long time. I care deeply about the subject. The trip to the Vatican for an adult stem cell conference and the subsequent stem cell clinical trial became part of the book. I hope to finish it by the end of the year. I suspect you all will have abandoned ship by then. I do not know how to reverse the tides. It will be what it will be.
I cannot apologize for making a difficult choice. I will have to live with the consequences. I am not going to say goodbye. That would be just too melodramatic for me. I will continue to write when I can. Think of me as the lonely tree in the forest. Maybe someone will hear something.
July 4th celebrates our nation’s escape from the tyranny of a colonial power across the ocean. And so we cheer. In this presidential election year, the candidates compete to project the strength and wisdom necessary to keep us free. Freedom is an important piece of our national identity, but is in the eye of the beholder. My large extended family sets off fireworks on a deserted stretch of beach every summer, mindful of the pride and power of that spectacle.
It is not lost on me, however, that the words, free and independent, mean different things to different people. Most of us, sharing our struggles and pain, writing in this space, agree that we are not free. And our independence is challenged each day. We are at a loss to do much about it. We fight on, privately, indeed, quietly, and we do not give up.
We are not heroes, only survivors. There is no day reserved and ready to celebrate our struggle. Really, we are anonymous, never larger than life. Life rests at the center of our war with an enemy we cannot see. We fought on yesterday, as we will do tomorrow.
The nation does not honor us, nor does it pay much attention to the one in five of us who lives with a disability. Nearly half the population has at least one chronic illness. All of us are invisible, blending into the crowd that refuses to see us and shows no interest in helping us. And so, we celebrate our own version of independence. I, for one, am ready to continue going it alone. Someday our priorities will change, and we will acknowledge the terror of battling the enemy within.