I’ve been around for a long, long year, stole many a man’s (and woman’s) soul to waste.
In the last year I’ve been in the headlines for my trifecta of stars with Parkinson’s disease: Neil Diamond, Alan Alda, and Linda Ronstadt.
The funny thing is that you people often believe life decisions or habits or activities can change your risk of meeting me. That may work for my friend heart disease, or for certain types of cancers, but me? Don’t kid yourself. Plenty of the things I do don’t have a known cause or risk factors, regardless of what some guy on the internet or TV tell you (and I bet he's trying to sell you something, too, claiming to cure it).
Others believe that a virtuous life will keep me away, or that I’m a punishment from God for being evil. You want good and evil? How about Pope John Paul II and Adolf Hitler (both Parkinson’s disease)? You American evangelicals think you’re immune? How about Billy Graham (Normal Pressure Hydrocephalus). You think I care?
I especially love it when you try to attach political significance to me, like I’m here to punish someone on the side you disagree with. Let’s talk about Glioblastoma Multiforme, probably the most dreaded form of cancer there is. Here are 2 names from across the aisle, Ted Kennedy and John McCain. Here's another pair: Lee Atwater and Beau Biden. Political affiliations and age don't matter to me. The last pair were 40 and 46 respectively.
Before I forget, let’s talk about Alzheimer's disease: Ronald Reagan. Rita Hayworth. Charlton Heston. Glen Campbell. James Stewart. Perry Como. Jackie Fisher. Charles Bronson. Peter Falk. E.B. White. Rosa Parks. Burgess Meredith. Norman Rockwell. James Doohan. Fred Trump (yeah, his dad).
How about entertainers (besides those I mentioned above)? Slim Pickens. Gene Siskel, Ethel Merman, and George Gershwin (all Glioblastoma). Michael J. Fox, George H. W. Bush, Muhammad Ali (all Parkinson’s Disease). Terry Garr, Annette Funicello, Ann Romney, Richard Pryor, Montel Williams (all Multiple Sclerosis). Sir Laurence Olivier (dermatomyositis). Robin Williams (Lewy-Body disease). Dudley Moore (Progressive Supranuclear Palsy).
Let’s move to Amyotrophic Lateral Sclerosis, AKA Lou Gehrig’s disease or Motor Neuron Disease. This is probably the most dreaded disease in all of medicine. Obviously, Lou Gehrig and Stephen Hawking are the most well-known, but here are some other names: Mao Zedong. Catfish Hunter. David Niven. Stephen Hillenburg (creator of SpongeBob).
Epilepsy, while not usually fatal, can still have an impact on one’s life. Believed to be something to ashamed of for years, many places used to have laws on the books forbidding people with seizures from marrying or having kids. Here goes: Hugo Weaving. SCOTUS Chief Justice John Roberts. Bud Abbott. Vladimir Lenin. Neil Young. Lindsey Buckingham. Lil Wayne. Former U.S congressman Tony Coelho. Prince. Florence Griffith Joyner. Fyodor Dostoevsky. POTUS James Madison.
This list, of course, only covers famous people I’ve affected. There are far more who aren’t famous, but who are just as important. Somebody’s parent, grandparent, child, spouse, aunt, uncle, cousin, friend, co-worker, and many others. If I’ve touched them, then I’ve touched you. And you probably still remember both of us.
Years ago, I first met Dr. Grumpy when he switched from internal medicine to neurology, and I remember him telling me that it was a real shock. Back in medicine he saw mostly old people sick and dying, but in neurology it had shifted to younger folks. That discrepancy still bothers him after more than 20 years of doing this job. And it always will. He has me to thank for that.
So don’t go around making me a political, religious, age, cultural, racial, national, or whatever issue. I don’t give a crap about any of those things. I’m a human issue. If you think you’re special, and have done something that will guarantee I leave you alone, you’re wrong.
Seriously bad things, like me, can happen to you. Or anyone. Sometimes it’s just shit luck.
You don’t like that? There’s only one thing you can do. If you have some cash you don’t know what to do with, donate it to a reputable organization working to eradicate one of the diseases I’ve mentioned. Because research leads to knowledge, which leads to treatment. That’s the only way you may be able to get ahead of me.
'Cause I'm in need of some restraint.
27 comments:
Hi Grumpy this is Linda. Great article! My mom was one of the not-famous victims (vascular dementia, in her case).
I was a mere 32 and 1/2 years old when I first realized something was really wrong with my health, and it took years before I was finally diagnosed with with my rare neuromuscular disease. Its been a horrifying roller coaster ride ever since.
Wonderful post! It brings it all home...
Beautifully Said!
Thank you.
Experience with a benign cerebellar tumor in high school (diagnosed at a time when the nearest CT was 3-hours -flight time), provided the wherewithal to deal with my son's schizophrenia. It is humbling, sometimes, to ponder on the compassion of those who've not personally dealt with infirmity.
Yes. Well said, thank you.
I hate all these diseases. My mom died of Lewy's Body Disease, terrible. She was one of those who took care of herself, ate right, exercised, and it took her very quickly and cruelly.
What about individual with progressive supranuclear palsy PSP) like
Abdus Salam and Dudley Moore.
I'd like to read of some battles you have lost and weapons that don't work as well for you as they once did. How has the war gone for you over the last 100, 50, 20, 10 years? Would make a good read some time in the coming weeks.
Good suggestions, I'll add some names. Thank you.
"Again I saw that under the sun the race is not to the swift, nor the battle to the strong, nor bread to the wise, nor riches to the intelligent, nor favor to the skillful; but time and chance happen to them all. For no one can anticipate the time of disaster. Like fish taken in a cruel net, and like birds caught in a snare, so mortals are snared at a time of calamity, when it suddenly falls upon them." (Ecclesiastes 9:11-12).
Even so, we have to do everything we can when disaster strikes. My father was a doctor, so I appreciate all you do. I know how hard it is (I have "idiopathic peripheral neuropathy", although I suspect Celebrex. But suspicions are not proof). I hope your ability to do more will increase in time.
Sadly HAVE a neurological disease, which had been untreatable until a year ago or so, but largely still is. Have seen people just ravaged by Huntington's disease, supranuclear palsy, Alzheimer's, Lewy Body dementia, (yes horrible), Parkinson's and my brother was diagnosed decades ago, at only six months of age, with grand mal epilepsy, (tonic clonic now I guess) and let's not forget Guillian Barre, myasthenia gravis, stroke, spinal cord injury, TBI and a host of other maladies which are all bad, yep along with ALS. Wish we were about 1,000 years in the future with REAL treatment available, rather than the alleged "symptom management," a misnomer for sure. Was one who did the "right" things but got slammed anyway. Preach it.
Thank you.
Thanks to you and all neurologists who are willing to spend their days battling such implacable foes!
I was diagnosed with an oligodendrolglioma - have been one of the very lucky ones, as that was 20 years ago and I am still fine - and one of the major consolation prizes has been a very good relationship with my neurologist. Sadly, he has recently been diagnosed with Parkinson's...
And I could not agree more: let's all give to keep those scientists working on future cures!
Sir Terry Pratchett, who has died at the age of 66, suffered from a rare form of Alzheimer’s disease called posterior cortical atrophy (PCA), also known as Benson’s syndrome. http://home.bt.com/lifestyle/wellbeing/9-things-you-should-know-about-the-rare-form-of-alzheimers-that-sir-terry-pratchett-had-11363967942621
And well, look at my user name and just ter try to guess what neurological disease I'm fighting, which goodness only knows how many famous people beyond Lewis Carroll suffer.
Cancer is scary...but disease in your brain, spinal column, and nerves is the terrifying one to a nurse who has cared for patients with all of the diagnoses listed. The terrifying realization that your brain (your mind, your rationality) is defective and deteriorating, or that your finely tuned neural networks that allow the range of human actions have gotten distorted...and that the only real answer is 'learning to live with it" and trying to coax your body to develop compensatory nerves/musculoskeletal/cognitive functions for a while...
Cancer destroys your body, but neurological diseases destroy your self and leave your body behind.
The list of illnesses people can come down with regardless their life-style or fitness, whether they are as fit as possible or some slovenly obese out of shape middle aged man or woman is disheartening. But I think the worst thing to happen is when a loved one falls under the influence of drugs or drink and no matter how much you plead or pray, they just can't seem to get rid of that 'demon.' I say this in sadness because my daughter-in-law's sister died of an overdose two years ago and then three hours ago, some very good friends's daughter-in-law was removed from life support that she had been on for two days after an overdose. The diseases you list Dr. Grumpy are something that can happen to any of us but addiction is a self-inflicted 'disease'. My heart hurts for my friends.
My August 6 comment was addressed Dr Grumpy's foe, the voice of the post. Not sure that was clear.
Thank you, Dr. Grumpy. This is so moving and educational. I think I've known someone or of someone with nearly every neurological disease listed here. We do need to keep busy working on treatments, and hopefully, cures.
Well said.
Thank you, Dr. Grumpy, to you and your colleagues who work to treat patients, and thank you to the scientific researchers who work for that knowledge and, ultimately, treatment. My father had Parkinson's Disease, and (I am told) Lewy Body dementia at the end of his life. Because of the research that had already been done, he lived a fuller and longer life than would otherwise have been possible. I hope that someday there will be a cure.
Wow, what a letter. As a former Pediatric nurse and a nurse in a Neurosciences practice I have seen them all and they are horrible. Your letter is very moving about a hideous and insidious group of diseases. I have rocked a baby dying from a brain tumor who screamed constantly from pain and we could not relieve it. I've seen adults completely unable to comprehend ALS and have seen many fighting the ravages of MS. Thank you for being there for all those people and I will work on a good charity (charity navigator.com) to find one.
I shared this link with a friend of mine, whose partner last year was diagnosed with early onset frontal something or another - its a form of dementia. It was only because they realised something was not quite RIGHT and kept pushing for testing that he was diagnosed. Thankfully the local neurologist said "I dont have enough experience in this" and referred them onto the Mind Body Centre in Sydney, who have been awesome, but yes, its a SHIT of a disease.
Love to you, Dr. G., for your care and dedication to these suffering people. And thank you for the perspective. I gotta go now, going to sign up for those dance classes I always wanted to take . . .
I think I got a little piece of neurological disease in my eye...
Don’t forget Andy Griffith (Guillain-Barré Syndrome).
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