I had a dream of holding onto a string high above the ground. I begin to feel the familiar feeling I have before as my blood pressure drops. I hold on tight, but I begin to fall asleep.
I am falling. I am aware of myself on the ground. I stand up and take hold of the string again. This time I am handed a heavy cast iron pan that I have to hold while I clutch the string above the ground. My diagnosis. The very name of it weighs me down and I fall again.
This time when I get up I decide not to take the pan. I might have this disease, but I do not have to let it stop me in this moment.
Once again I grab the string. Life is so precious.
I have a disease that cannot be fully diagnosed until I am dead and they look at my brain. On that day doctors will look under a microscope and be able to tell for sure if a certain protein has folded itself into arrant origami, unable to pass through the neurons. Although I will gladly give my brain for research, I am requesting that my family not be told whether I actually had Multiple Systems Atrophy or if it was just a wad of bubble gum stuck in my ear. I do not want them to think that there might have been another cause for my symptoms or to think my medical team did anything wrong. If only they had pulled that gum out of her ear everything would have been fine.
It’s pretty clear at this point, after 10 years of fainting and losing control of my bladder to finally find a doctor that could order the right tests to rule out the other things it could be.
I am ten years into having MSA, and two years more with a diagnosis. According to the Mayo Clinic website, people with MSA typically live about seven to nine years after multiple system atrophy symptoms first appear. Ten-year survival is rare. The thing is I decided to be a non-compliant patient and not follow all the orders I am given. Dr. Bernie Segal, in his book Love, Medicine and Miracles noted that non-compliant patients often lived longer than those who follow all the instruction and die on time.
I have explored every nook and cranny of alternative medicine, faith healing and even several years of therapy. I though what was happening was all in my head. I was right, but it was not a mental disorder.
A DAT scan showed I have a buildup of alpha-synuclein proteins, folding into wacky folded origami that stops the flow from neuron to neuron. There are a bunch of diseases that have a similar story. A protein of one type or another, fold up incorrectly somewhere in the brain. They cause Parkinson’s, Alzheimer’s, and many others. It just depentds on what protein and where it is in the brain. With MSA it boils down to a deterioration and shrinkage (atrophy) of portions of your brain (cerebellum, basal ganglia and brainstem) that regulate internal body functions, digestion and motor control. Not something you want to have.
MSA does not have a list of definitive symptoms, it’s more like a choice of one from column A, three from column B. Depending on the combo, there can be a Parkinson’s type or a Cerebellar type. So people who have this disease often question whether their symptom could be related to MSA or not. Dry blurry eyes? Yep. Cough and choking? Yep. Pretty much every answer is yes because of the multiple part of the disease.
This is about my personal experience, for goodness sake see a doctor if you have any of these symptoms, they all suck. Thank you to the Mayo Clinic web page for the actual medically correct information:
Predominant signs and symptoms are those of Parkinson's disease, such as:
Predominant signs and symptoms are lack of muscle coordination (ataxia). Signs and symptoms may include:
This is what happened when I was told I had MSA. Remember much like being informed of the death of a loved one, sometimes what actually is said is not what was really said. Your brain shuts off at a certain point. It is always a good idea to have someone with you for doctor’s appointments. So here is my account, which my husband says is not correct.
Two really smart Neurologists came into the room,
never a good sign.
Doctor #1: First the good news, you don’t have Parkinson’s.
Me: Thank goodness! That would be horrible!
Doctor #1: Well, you do have another Parkinson like disease (looking at the computer screen not me) It’s called Multiple Systems Atrophy. I have asked Dr. #2 to come in with us, she is the specialist in this kind of disease.
Me: speechless, dizzy, can’t breathe
Dr. #2: I suggest that you apply for disability right away. MSA is on a compassionate care list of diseases that will move you quickly along in the system. It is a list of disease where time is of the essence. Then get to know the hospice group in your community. You might not need them right away but it’s good to have something prearranged. Oh, and we want your brain for research after you die.
Me: Is there a surgery or pill? Some cure for this?
Dr. #2: No, I am sorry. We can treat your symptoms and keep you comfortable, but there is no cure for this disease and there is a shortened life expectancy.
Me: Well *&$!@$%^&&!!!!!!
My husband and I make our next appointment and walk without speaking down a long corridor to the parking garage. We both started crying. I said I was going to commit suicide when it gets really bad. He said yes, I know, but that is not today.
This evening I took a walk with my husband Chuck in my new wheelchair. I was surprised how emotional I was, moving from a scooter and walker to my wheelchair. It felt like another cog turning in the timing of my life. I have an actual wheelchair, signaling a progression in my disease. At the same time that same chair offers me amazing freedom to be out in the world. Maybe even a trip to Dick Blick, my favorite art store.
I had decided that as I first rode in it I would create some other diversion, so instead of people saying, hey she’s in a wheelchair they would say wow, look at that huge sombrero. I decide on some multicolored streaks in my hair to draw the attention instead of the sombrero. Actually, no one has said anything, they just smile, I am sure they are noticing my hair, not the pink wheelchair.
Oh yes, did I mention I have ended up with a pink wheelchair? I could not decide on a color, but my granddaughter saw the pink one and the next thing I know they have delivered a stunning pink chair. I still can switch it for red, but the pink is growing on me.
As I start writing about moving into a wheelchair I am guessing you have guessed that I did not get that pesky bubble gum out of my ear, which is always my hope. All my symptoms disappear as the pink blob is removed, so that’s where I put it! It was not MSA after all!
I have however, finally reached a really mad and smart ass stage of my disease. In one day I fired and rehired my neurologist, and then for sure fired my neuropsychiatrist. A bad appointment with the neurologist ended with her scheduling more tests and then making an off the cuff comment remark that maybe I did not have MSA after all. I cried. She was surprised I would not be overjoyed by this news, which did nothing to change any of the horrible symptoms I am having.
My second appointment of the day was with the neuropsychiatrist. This is the doctor who looks at the many and varied medications all my other doctors have prescribed and figures out if I am going to explode from the mix. I should point out that these were back to back appointments; I left the neurologists office in tears to enter the den of a psychiatrist.
She read my chart, notes my tears and we talk briefly about feeling upset with my appointment with the neurologist. By the way one of the symptoms of MSA, which at this point my doctor swears she never said I did not have, is emotional incontinence, I tend to have waves of huge emotions, but who wouldn’t?
So the neuropsychiatrist looks at me and says, Do you have a plan to kill yourself?
Let’s see, I have an illness that will continue to progress until I can’t move or talk but will have a perfectly fine brain, chugging along. I have discussed the death with dignity option, which is legal in my state, with all my doctors, mental health therapist and my entire family. And I have a clear contract that I would include everyone in the decision process. So I answer yes.
Do you have an actual plan set in place?
This is not a decision I take lightly, I would need to have already talked to my doctors and gotten a prescription before it is time, so of course I do.
What method would you use?
Pills, of course. Surrounded by my loved ones, I will go peacefully to sleep and into the arms of the Beloved.
Do you have these pills?
Probably not the actual ones, but if I needed to, I could come up with a mixture that would do the job. But let’s be clear, I am not planning to do this anytime soon.
It is not healthy to go around planning your death; I think you should be hospitalized.
I realized at that moment that she did not want to know my logical plan, and probably with good reason, she thought she was speaking to a teary wacko ready to jump out the window at any moment. She did not know me.
I am crushed. A few days, she says, just to make sure you are safe. I will call down to the ER and they will admit you from there. So here is this doctor with years of medical training and experience is telling me I need a few days in the hospital. What to do?
Chuck and I headed to the ER, somewhere in my mind I was just giving in. Maybe I am really suicidal, I don’t feel suicidal. But the doctor says she thinks I am, and she said just a couple days.
So in we go. If you have ever had this experience and really did need hospitalization, God bless you. But I did not. That thought came to me sometime between me having to relinquish all my clothing, being placed in a “special” gown, so garish in color that any escape attempt could easily be seen from the moon. Then a 20 something social worker with a clip board of questions entered leaving the exam room door open so the guard stationed outside my room could keep an eye on me. Then the social worker explains I would be in the hospital for at least a week.
It took me four long hours to talk my way out of there. Thank goodness that my therapist answered her phone, vouching for my mental stability, tendency to speak in a straight forward manner and my horrible morgue humor.
When I got my new pink wheelchair was described as having 4 speeds, the highest to be used only when needing to quickly cross a street. I found there is a 5th speed, and used it.
Anger Assisted in Break Through
I use a technique called Mind Mapping. It is a kind of real life puzzle that can be solved, only through the experience itself. I started with circles representing what was true for me.
“Love of Family” “My Spiritual Community”, “Writing and art” and “My Health Plan”. Then from those main circles I began to connect up the things I am already doing, or want to change about my life, like not speaking so bluntly to a doctor ready to hospitalize me.
I write: I spend quality time with my family. And I am willing to accept the love and support of my spiritual community.
I spend time every day in prayer and meditation, aligning myself with the Divine Healing that flows through me right now.
Under “Health Plan” I write: lie to all my doctors. No, that is not what I want, so I cross that out and write:
I create clear communication with my doctors. I am in charge of my health team. I make the final decisions in my care.
Then I remember that what I really want to do is see a local naturopath who does vitamin I.V’s. I have had them before and it was the best I ever felt. But alas, I quit because it is just so expensive. So I connect my writing and art circle to my health plan:
I create and sell my artwork and book to abundantly support my health.
So today I had my first injection, not a full IV yet, maybe next week, but my Master Mind is in action and life is good and very pink!
It has been quite a while since I have felt the need to write. My disease continues on its course, there are adjustments in my life to be made. I spend much of my time painting. Sometimes 5 or more hours a day, and late into the night. Most of my drawings are Mandalas. I feel a sense of calm and peace when I am painting, everything else falls away and I am only that which is painting.
I spend time listening to audiobooks, somehow my computer and Kindle have developed this blurry double letter thing. I am sure it is the device, but it has spread to the bookshelf, alas.
I will never sing in the opera or dance the, well, dance anything again except the Hand Jive. At this point I am in gratitude for being able to walk with a walker short distances. There are some things I simply don’t have to worry about any more which include sunscreen, mammograms or unprotected sex with strangers. Unlikely as that is, or has been, in the 45 years of a monogamous relationship, I am still keeping it on the list.
What has called me to write now is because I bet you want to know the details of what it looks like to have a disease that is so rare that you are more likely to find a lump in your breast while having unprotected sex with a stranger without wearing sunscreen.
I have moved into having “home health care”. Which means instead of spending an hour having someone help me get ready for an appointment, then bagging out because I am exhausted from getting ready, all my services come to my house. O.T., P.T., speech therapy and a nurse visit, both a couple times a week. I go to my doctor’s appointments and church. So, besides the rare times I can talk someone into taking me and my scooter someplace, or go to Dick Blick, the Seattle art mecca with a huge selection of Tombow watercolor pens after one of my many doctors appointments, I am pretty home bound. I have discovered that I can order from Dick Blick on line, so Chuck has taken my credit cards and put them on the top shelf. I faint if I lift my arms up, drat.
The home health care is great, but a little weird to have so many people in my bedroom. The inner sanctum of my house. I now have an official “visitor’s chair” which is used by health care providers and good friends coming to visit, preferably bearing donuts. Every caregiver asks me the same questions, possibly hoping to catch me in a lie about my last fall or the amount of donuts I am eating. One of the questions they all ask is about new symptoms. So this will be a good place to catch you up with The Days of One of Cathy’s Lives.
In our last episode I had just fallen trying to get the credit card down from the top shelf and straight out lied to Chuck about the incident. I had caught myself on the way down on a chair and no bruising occurred so I felt I was within my rights, only to be busted when the neurologist asked me about the last time I had fallen.
My shortness of breath and swallowing issues led to the purchase of the most expensive bed in the world, a king size sleep number adjustable bed that tracks how you slept, your pulse and rate of breathing. My grandchildren are enjoying pretending they are on a plane and need to bring their chairs into their full and upright position, as they push the button that brings the top half of the bed up.
The full and upright position is helpful for me too because I have to sleep now sitting up. I tend to faint when I am flat, and find it difficult to catch my breath. So naturally I had to have a third sleep study. I swear the new bed ratted me out, and now I am moving into the wonderful world of oxygen. At this point I don’t actually have any, besides what Mother Nature has gifted us, as in “it’s in the air”. But there is plenty of talk about needing more.
The amazing and wonderful thing about our new bed is that Chuck bought it so we could continue to sleep in the same bed. I love that. What could be sweeter than to know that I will never have to be in a hospital bed and that we can always cuddle.
I am being “fitted” for a wheel chair, not that I need one now I am told, but it is always good to know these things. Has someone ever offered you with a wheelchair fitting? Maybe at a fair or something? Offering the newest model at a special fair price? That booth would be right next to the coffin fitting booth. I did read that Walmart is now selling coffins. I have said I would never shop at Walmart, maybe I said if I was ever to shop there it would be over my dead body. For those of you who think coffin jokes are in bad taste, please note that morgue humor is on my allowable list along with sunscreen.
Another big shift for me is I am now on a pain patch, which is amazing for someone who has had years of pain, why didn’t someone think of this before? It is wonderful, but the disposal method is very odd. I remove the patch, put it on a special sticky paper, which folds over another sticky paper then carefully placed in a hermetically sealed jar which is picked up by armed guards. Apparently the used patches are quite popular, which explains all the people lurking around nursing home garbage cans. Next thing you know addicts will be tackling old people, stripping them bare in search of pain patches.
Now for the biggest most horrible change and that I just spit out whatever is on my mind. I know I sound perfectly well at this moment, except for the coffin joke, and the unprotected sex comments and the admission that I lie about falling. Okay, maybe my new lack of govener is showing a bit, but I have had some really bad turn-a-phrase incidents recently. I have offended over 30 members of my family, many of whom, both friends and family, have un-friended me from Facebook, which is like being both excommunicated and shunned and the same time. I will say that all my close loving friends and family all still love me, knowing I have always been a bit quirky, and nothing could stop them from loving me.
So there it is, I have no interest in shopping for anything but Tombow pens and watercolor paper. I will try to stop painting long enough to write again soon. I had to find something else to do tonight because I am on painting restriction because of my crazy cramping, which has curled my right arm up like a pretzel. This has gone pretty well for one handed typing.
The truth is some days I just panic, thinking about what is coming. Which is why I am incredible thankful for my spiritual practices that have strengthened me to deal with the realness of life. I highly suggest, whatever your tomorrow looks like, to stay in the present moment. And hang in there even if you say something stupid. Love has a way of mending fences, and even a brain now and then.
I am finally well enough to get up for a long enough period to get into my office to my “big girl” computer. I have a Kindle so I can look at my e-mail and type out a short message, but to really write I need to be able to get out of bed and to the keyboard.
Plus the truth is I have been depressed. So it is an emotional trip, as well as a physical one that has kept me from writing. I tend to want to wait until the other half of the story, the good and happy part, emerges before I write. I had a really bad day, but then….
Right now I am in a place where the turning point towards the light seems far away.
I have become resistant to several of the antibiotics that are commonly used. Since the first of the year I have had to be on antibiotics more than a dozen times, including a couple rounds of IV antibiotics. Even though I am now on the third type of antibiotic I have taken back to back, I still feel horrible.
Close to 30% of people who have MSA end up dying from a urinary tract infection. I have been dreaming about taking the catheter out myself, although that would not stop my urinary issues or stop the chance of infection. My daughter, the nurse, has asked to sit down and have a talk with me about the steps taken when someone ends up in the hospital with this kind of infection. She says that there might be things I want to decide ahead of time, like the things I already have written like “do not resuscitate, or do not intubate”, there might be some additional things I might want to add to my directive. I can’t imagine what those things are, maybe “don’t poke me with a fork” or “do not play country western music in the patients room”; but probably not.
I have filled three journals since my diagnosis a year ago. The last one I filled in less than a month. I find drawing is very helpful to keep my anxiety level down. I this last journal most of the drawings are mandalas, which seem to be the most relaxing for me to draw, but as I draw late into the night and my hand craps up they take on an edgy, frantic look, like drawing it will somehow keep me alive.
I keep thinking I am doing something wrong to get these infections. And other people are always ready to jump in with their ideas. So are you changing your catheter bag often enough? (No, I have been hired by the government to develop a new weapon of mass infection) Are you drinking enough water? (No, I have totally switched to tequila).
I am following all the reasonable advice about how to care for this bizarre tube sticking out of my stomach. Drinking lots of water, no baths or swimming, good hygiene, frequent equipment changes, once a month sterile tubing change. But that number, almost 30%, keeps going through my mind.
I have started a list of things I no longer have to worry I am going to die from. I have stopped wearing sunscreen and have a great tan. I could (but have not up to now…) smoke all I want and drink like there was no tomorrow. I could have unprotected sex willy-nilly and not pay attention to signs that say Danger. I could skydive, start fights in bars, and hunt rattlesnakes.
I think instead I am going to continue to do the really dangerous things like breathe deeply, feel all my feelings, say everything I need to say, and live my life to full each precious day.
In grace and ease,
My favorite quote right now is from Anais Nin, “Life shrinks or expands in proportion to one’s courage”. So courageously saying yes to traveling from Washington State to Washington DC, zooming through airports in a scooter, with a catheter and a very little amount of energy, my husband Chuck and I traveled to Bethesda, Maryland to the National Institutes of Health where I participated in a week long study for early identification of Atypical Parkinson’s, Multiple Systems Atrophy.
I thought long and hard about traveling across country to participate in tests that really would not help me get better, but I am at heart a teacher, and as such I felt I wanted to help others be able to find the answers to their questions earlier than the years it usually takes to pin down some of these tricky atypical Parkinson’s diseases. I felt I could really do something to make a difference.
The entire experience was amazing. Every nurse was caring and friendly. Everyone I met, including Kay, a Chaplaincy Intern who prayed with me twice, seemed to be there because they had found their calling. And on top of the wonderful care, the food was great. You order like a restaurant whenever you want and they will bring up anything you want.
I am especially grateful for the amazing care I received from Dr. Goldstein, Dr. Cook and Nurse Practitioner Extraordinaire Jennifer Pope. If you have been diagnosed with some horrible neurological disease, these are the research team you want.
I lost count of the amount of times I was stuck with a needle. The first night I was there I ran through four highly trained nurses, who all were sure they could draw some blood, not even an I.V., just to get a blood sample. Finally the Pro from Dover (If you are not familiar with that phrase, please order up the movie Mash) arrived and bam, I had an IV, blood was flowing and all was well…for about 6 hours, which seems to be my I.V. max.
I had blood tests, a CT scan, and then 3 hours with my arms up over my head having a PET scan. When asked about my super human endurance to stay put for so long, besides the fact that I have an indwelling catheter, my answer was meditation. I spent that time at my beach cabin watching shore birds. I ask them not to have me to respond verbally when they were checking in, but I would raise my finger only. When I am deep and down I want to stay there.
Next day it was only 2 hours in the PET scan. Then I had a lumbar puncture. The hardest and most painful part of the week was when I had to stay flat on my back for 6 hours of excruciating back and hip pain. I am making an appointment with my orthopedic doctor this week. I should not have bragged about my amazing meditation abilities.
I also had a sleep study; I think the technician used Elmer’s glue in my hair. I could not wash it out the next day because I had 5 biopsies on my leg, I could not shower for 24 hours. More blood draws, an echocardiogram and then a vanilla shake. Really, I could order anything…sweet! It made my life with glued hair bearable.
They also did a DNA study, I will know way too much about my probable course, and any inheritable disease I could pass on to my family. Chuck has a lot of cancer in his family. When asked about if he thought he would inherit that family curse he said, “I inherited that thinking style, not the disease, how I think is up to me.” So in the middle of what appears to be so real I remember the great Shakespeare quote; “There is nothing either good or bad but thinking makes it so.”
Although the week ended with a meeting with Dr. Goldstein and his staff, we really will not have the full information for about a month; then it comes privately to me. Outcomes, specifics, dastardly facts; all mine to decide with who and if I share this thinking style.
I am still tired from the plane ride, but so glad to be home. I woke up the first morning back with my 4 year old granddaughter Nora’s face right up next to mine, “Can you draw me a doggie fairy Zuma?” I am home.
In two hours Chuck and I leave for the airport to begin our trip to the National Institutes of Health in Maryland. I am going to participate in a study to find methods so doctors can diagnose Multiple Systems Atrophy sooner than the amount of time it currently takes. I figure I had MSA for many years before my diagnosis, not uncommon for this disease.
I have been given a long list of tests that I will have this week. Some of these tests will help me to know more about my disease, where I am in the greater scheme of things and if there is anything I can be doing now to assist me in my quality of life.
Needless to say if I am writing this at 3:29 a.m. and we leave at 5:30 a.m. and I am a little nervous. Actually the whole airport routine and the plane ride itself is the biggest part of my sleeplessness. You can imagine going through security with 2 shoulder and 2 knee replacements, many pins and other metal bits in other locations, and catheter bag. Last time I flew I realized that I could have a full cath bag full of some explosive. Nobody wants to come near it although it could be filled with gas. (note to any bombers who are reading this, please disregard that idea). Security will quickly takes me aside, asking if I would prefer a private room for a personal pat down and look-see I know this is going to take some time.
Not long after 9-11 I was flying out of Newark, NJ. I had a jacket on and when the alarm went off indicating I had something metal around my shoulder, I, of course, start to reach up to show them my recent shoulder replacement, saying "I have a..." (Just for future reference, DO NOT DO THIS.) I was tackled by three nervous guards who thought I was reaching for a gun. I have learned to say, with my hands down, "Would you like me to tell you about where I have metal in my body?" It's about then that they begin steering me to a private room. Chuck goes through security, gets a latte and comes back 10 minutes later to pick me up.
I have told everyone that if something happens and I die this week it is all good. I am always in the right place. Just knowing I have said this to family and friends makes me realize I am a bit out of sync with what I am really feeling about this week of tests. I am sure I will come back with rave reviews of the hospital stay, the food, the trip and all the information I received from my DNA study and all the other tests, but the truth is I am more that a little scared. Just one of the planned tests would be considered a big deal, I have four days of poking and prodding. Stiches will be involved as well as IV's and tape that I will probably be allergic to. Really, a great trade off, but I will be happy to be home next weekend.
The picture I have with this post is the last page of my 2nd journal. I started writing and drawing in a journal since my diagnosis last August. When I start a journal I drew the last page first with the understanding that I actually could die before filling the journal. The first journal has a drawing of amanita mushrooms, the lovely red mushrooms with white dots, often drawn in children's books with fairies. (amanitas are a poisonous mushroom,and used by shamans and other knowledgeable folk as a hallucinogen). Under the mushrooms is a small chair with a long row of knitting, the ball of yarn rolling away like I just stood up. The words say "You just missed her".
The 2nd journal's back page is this milkmaid who has just spilled her milk. It says, "Sometimes things happen, don't cry over spilt milk, I love you all!" I am now starting my 3rd journal and am thinking about what the last page of this one will be since I have no intention of dying during the writing/drawing of this one. We will see what I come up with.
I think this is about enough for now, I have given a horrible recipe to bombers to get past security in airports and information about using a really poisonous mushroom for possible recreational drug use, great.
Life is wonderful, funny and unpredictable. Don't go licking any red mushrooms.
In grace and ease,
Here I am, moments before the procedure I said I would never had. I am smiling because 1.The nurse was able to put in a really nice IV and 2. I have this really cool heated blanket on that blows hot air through the whole thing. Small pleasures.
So I am home, with a bit of an infection so I am on antibiotics once again. I am still in a period of shock, and overwhelmed by all the tape and tubing that has suddenly become the reality of my life. Grief of change, loss of the plan for my life, another wave of the realities of MSA flood over me.
This month's Spirituality & Health magazine has a column by Geri Larkin, author of Close to the Ground; The Seven Factors of Enlightenment. She talks about learning to lean into suffering. "Until we realize that there is simply no escape from the pain that life brings and that all we can do is sit in the middle of the fire, we only pile suffering on top of suffering. Resistance is like that. So we lean in. And suffering dissipates."
Welcome to my blog. Here I will write about all things Cathy.