First indication –
When my twins were but two and a half, I was pursuing a further acting career in voice over because Hollywood doesn’t like women over forty in front of the camera. While in a one on one coaching session, I noticed my mouth involuntarily moving too slowly once or twice. My teacher and I agreed it was probably because I was tired. But it kept happening as the weeks went by. I managed to record a good demo CD, but that career was not to be.
My father is a retired surgeon and my mother was a nurse, so I knew intrinsically that something was not right. I went to a Ear Nose and Throat MD when my mouth began to slur almost daily. After finding no organic structural flaws she gently suggested I consult with a neurologist. In the parking lot after that, my stomach made a fist and my breath came in more shallow as I hung my head. I’m married to a rare patient man in the music business and he comforted me upon returning home that evening.
The neurologist was gracious and kind, as I literally burst into tears when he entered the exam room. All the response tests he gave were fine, even the EEG. But he did want to rule out Multiple Sclerosis (MS) or a brain tumor/lesion, so he scheduled a MRI (magneticresonance imaging) for me. It came up negative for any lesions or tumors! I was joyous, my father and sister were joyous. My life returned to it’s busy normal self as we had two toddlers to raise and contend with. I had a nagging feeling however, and a garbled mouth, aka: disarthria.
Second indication –
Walking along down my residential street heading to the local village area, my left thigh hesitated ever so slightly when it was supposed to return, in it’s stride, up to the forward position. The moving body, in it’s stride is an amazing thing. Heck, any mammal’s body is sheer wonder if we would only stop for a moment and consider it! Seems only during the Olympics or during marathons do we stop to think, to marvel at the human body, the wonderful creation that it is.
But that hesitant thigh/knee was the dire confirmation clinching my dread, my awful suspicion that something was happening to me, my body. About this time, my husband’s music company requested he transfer to NYC, offering a quasi promotion and moving expenses. So we headed there amid speculation on my status, since my neurologist could find nothing on retesting and a second MRI. He only contended that something must be going on, and eventually something would show up on the MRI. How long before I would find myself in a wheelchair, I asked him? Maybe five years or so… I was by this time, an emotional wreck and that neurologist steered me to a psychiatrist for my unstable depression.
Before we moved to NYC area, I had my father arrange a referral for me to a good neurologist. Turned out he found one of the best at a leading hospital, Columbia Presbyterian in upper Manhattan near the Bronx. I went there to try and find a diagnosis. The neurologist specialized in movement disorders and we, my father and I, presumed it was something about that -since my leg was getting stiffer by the day. In fact, after foolishly rushing in the parking lot after a movie, I tripped and fell, breaking my ankle against the hard wood heel of my slip ons. My not so graceful butt came down hard against my ankle, impacting wood. Ouch! Of course I had to have surgery for a plate installation since it was a fragmented break. I felt a little like an automobile in for repairs.
My kids were to enter kindergarten that September, so we found a house in Scarsdale and moved in. My sister visited and she and I went to have the PET scan the new doctor ordered for diagnosis. I had planned the scan appointment around her visit. My husband was working nonstop, but he did accompany me to many of the doctor appointments.
Insult to injury, the PET scan cost $4,200! which my insurance refused to pay. I was still walking at that time, and I remember taking time to amble up a lovely tree lined path with my sister to the scan facility. She and I gazing at each other and rubbing shoulders over and over as if to recognize it was all true. And it was true.. I had MSA, a rare Atypical-Parkinsonian disease. (One can Google the condition to learn about it).
I’ve survived a lot longer than the seven to ten years typical of this, wahoo! and I have a great movement neurologist at UCLA that’s caring for me now that we’ve moved back to SoCalif.
-One doesn’t know what’s next on the journey, so have tolerance for those who are struggling. I’ve changed tremendously since 2000, but change is inevitable. You learn from it and gain humility. Being disabled provides a landscape of perspective where once, there was none.
The Take Aways:
-Appreciate what you have right now.
-Respect your body, what it can do.
-Everyone has some mess in their lives.
-Family is the best support you have.
-It can always be worse.
-Go out into nature for the refreshment of your soul.
-Always hold on to hope.
Heidi Morrell Bio:Heidi Morrell is a former T.V. actress, short film maker and college graduate in English. After having been diagnosed with an atypical movement disorder, MSA, she had to retire from acting and deal with her condition; however, she still and always has written fiction, poetry and essays. Heidi writes a column on disability and other topics, for examiner.com as: ‘LA disability’ examiner, please subscribe: http://www.examiner.com/user-
Sonia Marsh Says: You are a true inspiration to all of us, especially when we take our health for granted. I am grateful to you for reminding us that we have to “appreciate what we have right now,” and that, “it can always be worse.” Your take-aways are a wonderful reminder, and I appreciate what you are doing for all of us, by opening our eyes to what life is all about. Thank you Heidi. Please leave your comments for Heidi below and share with your favorite social media online.
***
Don’t forget to vote for your favorite July “My Gutsy Story.” You each get ONE VOTE, and please share with your friends and bloggers so the winner can pick his/her prize from our list of sponsors.
The voting starts August 2nd, until August 15th, and the winner will be announced on August 16th. Please go to the sidebar to VOTE and click on your favorite story of the month. Thanks, and please share with your favorite social media buttons below.
***
Do you have a “My Gutsy Story” you’d like to share?
To submit your own, “My Gutsy Story” you can find all the information, and our sponsors on the “My Gutsy Story” contest page. (VIDEO) Submission guidelines here.
***
Heidi,
Thanks for sharing your incredible story which reminds all of us to be grateful and appreciative of our health and our life. You truly are an inspiration.
Thank you Sonia! What you do here is discovering the best in us. You have a big heart, I know, and this forum of stories is commendable. Well done! -HM
Heidi,
Thanks for sharing your story – you’re truly a gutsy lady. You’re so right about the body being powerful (to the extent of Olympic achievements) yet fragile (in the face of disease / accidents / injuries). Good luck with your column.
Belinda.
Belinda Nicoll recently posted..The Art of Being an Author—and Reader
Thank you Belinda, I appreciate your well wishes. Doesn’t pay much, but in the end, it’s so much more than that. Be well, -HM
Heidi,
You are an inspiration to us all. I was diagnosed with an autoimmune disease almost three years ago. What causes it, the doctor really don’t have the answers. However, the meds do keep it under control, at least so far, but, what awaits down the road, is just a matter of time, until then, like you said, “Appreciate what we have now, and enjoy life to the full.”
Thanks for sharing your heartfelt story today.
Gigi Ann recently posted.."Book Blogger Hop"
Gigi Ann, -I feel for you and your condition. Keep the ‘ol chin up and live life in the present. No one knows what’s around the corner so we must be loving to those we care about, and to strangers, pleasant and kind. Thank you for responding, HM
Phew! What an ordeal and disease to have on ones’ plate. In reading your gutsy story, Heidi, I saw two incredible character traits at play: Fortitude and Resilience. I cannot help but marvel at the strength in spirit you had to have as you made your journey to now. Mixed in with my empathy is a ton of congratulations for the manner in which you have faced a calamitous circumstance.
Doreen Cox recently posted..UNEXPECTED VISITORS
Hi Doreen, It is pretty tough going day to day. I only wish I were more patient with my family. I sometimes get too angry over a perceived slight or miscommunication, which obviously happens often with my slow mouth.
You are so kind to give me praise and those lofty adjectives! Thank you for your uplifting thoughts. I treasure them.. -HM
Heidi, I am familiar with Parksonism symptomatology as I have a brother-in-law battling the effects of same. Your courage in sharing your story is awe inspiring, and I appreciate deeply the reminder that of what we should each be doing daily in our lives. You’re some gutsy woman!
Sherrey Meyer recently posted..Fine Tuning
Hi Sherrey, -Thank you for your words of support. They mean a lot to me. Wish I had even more courage, and less anger. Your own story is harrowing, and I am proud of you for your bravery VS your poignant but unstable Mama. Do well. -HM
Hedi
Thanks for sharing your story, i too suffer from MSA.
I wish i had more strength to hold on and fight this.
I am proud of you for the way you are handling this.
Sandy Schefano
I LOVE your take-aways. Thanks for sharing such an inspiring gutsy story!
Teresa Cleveland Wendel recently posted..Crop Circles in my Backyard
Thanks for sharing your story Heidi. I can’t imagine what it must be like not to be able to walk when you have 12-yo twins! I wish you all the best and hope that, in time, a successful cure will be found. You are an insparation!
MuMuGB recently posted..The Story Of a British Date Gone Wrong
Dear Heidi, you are an inspiration, bless you and your family. What a difficult, harrowing disease to be diagnosed with. In some small way I understand both your anger and frustration AT your anger. I was in an accident leaving me with small limitations, physical and mental, but they are big enough to impact on my life and that of my family. Be strong and courageous. Continue fighting and sharing. I wish you blessings and joy amidst it all. X
I missed your story first time around but bless Sonia for remindig us to go back. I have spent more than fifty years in the health field, albeit as a dentist, but had never heard of your specific condition. May you continue to “beat the odds” for many years to come.
oodie oodie oof oof, aaaaah,toodle doodle
I can’t imagine the panic when you knew something was not right but didn’t have answers. Life is indeed fragile. You are a brave woman who obviously has her head and heart in the right place. Love your attitude.
b
barbara recently posted..15 Tips on Blog Comments and How to Get More of Them
Hi Heidi………Nothing has affected your beautiful writing style.I will always remember that from the time That I read your movie script while in Mauii with Jeremy all those years ago…..I know just how tough it must be for you on a day to day basis, as my own mother had PMA (Progressive Muscular Atrophy) I believe it has similarities to MSA.Sadly we know so little of these rare neurological disorders. ….Sandi & I hope we will get to see you again soon…..It’s been too long!
Life’s journey isn’t always a smooth one but you are handling it with grace & dignity, surrounded by the love of your family…….You are also in our thoughts & prayers.
Love,
Tim & Sandi
Heidi, I ran across a link to this story on the Yahoo shy-drager (MSA) group message board. My 50 year old sister was diagnosed with MSA-C two years ago at the Mayo Clinic. She is now almost entirely in a wheelchair, has very difficult speech and breathing problems, has lost the ability to write and many other issues. It is difficult to be sure, but you have to keep doing whatever you are able to do every day and live as full a life as you can.
I admire your strength, and keep writing! You are not alone!
Sincerely,
Deanna
for Marina, MSA-C
P.S. my sister’s insurance (teacher’s Blue Cross in Alabama) denied a bunch of charges including the PET scan (about $10,000 in charges from UAB and Mayo). We fought it and won!!!
I was diagnosed with MSA-c and have arrived at the same “take aways.” I wish you the best, of course,
and hope an effective treatment is soon upon us! Your story is similar to my own….
Hi I am also a mom with MSA, my eldest is 13 and my youngest is 5. I know it is very hard to live this everyday. I was diagnosed 2.5 years ago and my symthoms are mainly autonomic.I wish you all the luck in the world.
Dear Heidi,
You are much in my thoughts and prayers as you battle this disease. My husband was diagnosed in 2006, just two years after we married in our late 40s. It was supposed to be a wonderful time for us as I had already been a widow for almost 8 years and Gary had been divorced for twice as long. We had finally found each other and then the dreaded diagnosis of early onset Parkinsons and the subsequent diagnosis of MSA turned our lives upside down. As a kindergarten teacher, I wasn’t ready to retire, but was forced to as someone had to stay home with Gary after a few years. His decline has been rapid at times, but on the whole, is better than many others we have contact with through our support group.
Parkinsons has Michael J. Fox, ALS has Lou Gehrig and Liz Taylor was all out for AIDS. We need a spokes person who can get the word out about this horrible disease and who can help us lobby congress that some of the laws concerning disabilty with Social Security need to be changed such as patients having to wait 2 years to get on Medicare. I was blessed with having a relatively good insurance through my school district, but when I quit to stay home with Gary, we went on COBRA and our premiums were over a $1000 a month! Thankfully we were blessed with income from oil royalties I inherited or else we’d be destitute today!
MSA patients, Lewy Body Disease patients, PSP patients and all the same type of sufferers need representation. May God Bless you on this journey!!! There are numerous MSA Angels watching over us.
Sincerely,
Mary Ann :-)<
Heidi, you were the most beautiful homecoming queen in high school and you are even more beautiful now. Courage, and, most
of all, humor can get us through anything…many good wishes to
you.