My Parkinson's Disease
Update on March 22, 2014
I just want to reiterate that this is MY story, no one else's.
Unfortunately, some rather unscrupulous people have decided to covet my story, to copy this article word for word and pass it off as their own. One thief, a harsh word but he deserves it, is even a Hubpages author who has copied not only my story but the work of many other hubbers on this site. He should know the rules apply here whether he is active or inactive. He has nothing published on his account.
I think Hubpages should be wary of these accounts who have nothing to their credit because they are probably part of the reason why there is so much stealing going on with Hubpages. I work on several other websites and I have never seen the amount of stealing as goes on here on this webiste.
So, unless your name is Mary McShane and you have a twin sister named Nancy, I do not see how this could possibly be your story. DO NOT COPY.
My Symptoms by Mary McShane
Published December 24, 2013, by Mary McShane
Imagine slowly losing abilities you take for granted in your everyday life.
Now imagine not even noticing you were losing them.
This is my story.
For over 30 years, my life revolved around public speaking, working professionally as a nurse practitioner, my writing, and singing in the church choir several times per week. My "other" free time was spent with Rob, my lifemate, with my family and friends, or working out at the gym. A busy life, to be sure.
Looking back to December 2011, an early symptom was a tremor in my right hand that seemed to get worse when I was sitting still, watching TV or talking on the telephone. As long as I was moving around, I rarely noticed a tremor. Soon after, my memory started to escape me ... things I did and places I frequented the week before suddenly seemed hard to put my finger on. Some days my balance was off, other days I was fine but my getting up from sitting down was affected. I'd have to catch myself when standing up to make sure I was ok in the standing position before setting off to walk.
From the textbooks and websites I consulted, some of my symptoms pointed toward Multiple Sclerosis and some pointed to Alzheimer's Disease. But being stubborn, I thought it was all in my head, that nothing was physically wrong with me except fatigue and overwork. I blew it off and muddled through, knowing my retirement date was coming in June 2012. I told myself that when life settled down, things would be back to normal.
All my life, I prided myself on my organizational skills - from putting together our family reunions, scheduling over 50 employees and keeping them all happy with those schedules, all the way down to using index cards to put sections of my speeches so they flowed nicely. I am organized to a fault and probably have a little Obsessive Compulsive Disorder (OCD) going on.
Okay, a lot of OCD. My busy life needed to be kept organized, so I guess OCD was a good trait to have. I kept a daily planner with schedules and appointments for each part of my life, whether it was my work hours at the hospital, my speaking engagements, choir practice or date night on Saturday with Rob. One look at my datebook and you knew what my week ahead looked like.
Toward my last year of employment, that datebook became my lifeline. I developed memory problems where I couldn't even keep the days of the week straight, always asking people what day it was. I thought for sure I had Alzheimer's Disease, or at the very least, dementia.
My handwriting varied from day to day from real tiny to normal, fluctuating between legible and illegible. I found I was holding the pen so tight and never even realized it. Because I was so busy, I dismissed a lot of symptoms I should have been paying attention to.
But in March 2012, my voice suddenly became hoarse and I was tripping over my words, what many call word confusion. My breath would catch because the muscles in my chest would suddenly get rigid and stiff. My sister Nancy and my lifemate Rob, being concerned about many of my symptoms, pushed me to consult a neurologist now and not wait until my retirement.
This began the testing phase; one test after another was ordered. The neurologist kept an eye on my symptoms as we waited for test results.
I was not content to sit and wait. I had to do something to keep sane. To keep me alert to day and date, and to keep from "losing" my medical knowledge, I started a medical blog on Blogger, while still working my day job. It kept me accountable (a place to check in everyday and post) and it cut down my confusion on the day and date.
However, it also made me throw myself into the work. Many nights, the clock had no value and I often found myself in front of the computer for marathon hours, where late nights soon flowed into morning. Then I had to get ready for my work day, going with no sleep.
By the week after my retirement party in June 2012, with no schedules to tether me, I got busy organizing my story writing archives, joined several other writing websites. I had so much I wanted to do and with my symptoms still being questionable, I felt I might not have much time to do it all.
One morning in the second week in June, I was having more trouble than usual getting up from a lying down position in bed. I couldn't roll over to sit up. I am 5 feet 5 inches, and weigh about 125 pounds, not much girl here to haul out of the bed! But I had to hold on to the headboard and end table, and struggle to roll over on my side in order to sit up on the side of the bed.
Getting up too soon caused me to lose my balance, so I sat on the bedside for about five minutes before venturing into the bathroom. The bathroom is about 6 feet from my side of the bed and I found myself holding on to the walls and door frame to get into the bathroom. I caught a look of myself in the dresser mirror and I looked like something the cat dragged in. My face was drawn, my color was awful and the tiredness I felt showed all over my face.
So this is what retirement looked like? I swear I didn't look like this the day before.
But Rob, my lifemate, tells me I did.
- Parkinson's Disease Pictures Slideshow: Symptoms, Stages and Treatment on MedicineNet.com
Slideshow on Parkinson's Disease, a brain disorder that causes tremors, a gradual loss of muscle control and affects the nervous system. Symptoms, stages and treatment for this degenerative disease.
- Questions & Answers For The Newly Diagnosed
Click link, then click to expand each question for answers.
For about a month, he had been noticing that I was bumping into things and catching myself when I felt I was losing my balance. I noticed black and blue marks on my thighs and arms but didn't remember how I got them.
When he noticed a worsening tremor in my hands while we sat watching TV, I thought it was from overworking.
He would offer me a hand or arm to help me get up after I was sitting for long periods, I thought he was being gracious.
When he started filling in my sentences with the words I was fishing for, I thought he was just reading me good!
I do have Rheumatoid Arthritis (RA) which is treated with methotrexate since 1990. The drug takes care of my stiffening and swelling symptoms so I can function - eat, type, walk, write, daily living activities.
So when I got spasms in my hands or when they went stiff, I attributed it to RA. When I was hit with a fatigue I had never known before, I still chalked it up to trying to cram more than 24 hours in one day.
Before I knew it, I got hit with a barrage of symptoms. My voice first got low, then went completely hoarse and my sentences came out painfully slow. Doing a mile on the treadmill at the gym might as well have been ten miles; I just couldn't do it and still drive home afterward. It was exhausting.
By the end of June 2012, just walking in the house became difficult where I was holding on to furniture navigating from one part of the house to another. When I got to my destination, I forgot what I wanted.
It was one thing to have tremors, but when my memory became compromised, I got very upset.
I called the neurologist and told him I needed to know what was wrong with me. Now.
The Many Reasons Why Treatment Is Not Started Immediately
I take Sinemet and low dose steroids
- Parkinsons Disease Pictures: Tremors, Symptoms, and Treatments
Tremors and frozen muscles are typical Parkinson's symptoms shown in WebMD's comprehensive slideshow about the disease.
- Parkinson’s Disease Daily Activities, Care, and Energy
Tips for those with Parkinson's disease about how to plan and achieve daily tasks and activities.
- Eating Right With Parkinson's Disease
Eating a well-balanced, nutritious diet is extremely beneficial.
- Parkinson’s Disease Falling Down Prevention
Tips to help you maintain your balance and prevent falls at home and elsewhere.
My Diagnosis: Parkinson's Disease
In the medicine, there are certain conditions, disorders and diseases that doctors cannot or will not diagnose until a certain amount of time has gone by so they can document symptoms over a period of time. Typically with Parkinson's Disease, that time period is six months.
While going through all the testing to rule out other conditions, I threw myself into researching my symptoms. With each scan result (MRI, CT and PET scan), I became convinced that it all pointed to Multiple Sclerosis.
My first neurology consult was with a physician friend and former coworker in March 2012. When I didn't like what he told me (early onset dementia), I went to see another at a different hospital. This cost me valuable time in getting an "early diagnosis" but I didn't think all the bases had been covered with the first neurologist.
After getting second and third opinions from three different specialists, it wasn't until August 2013 that I was diagnosed with Parkinson's Disease.
As a medical professional, I was annoyed that I never even pegged my own symptoms at onset, or during months of testing and consults. This is proof positive that you should never diagnose yourself!
I now know that what I have lost is not temporary. There is a surgical technique to help with symptoms, but I am not at that point yet. Medication will help keep the disease from progressing and try to keep me comfortable. It will do nothing to help me gain back what I have lost. I am still getting used to the medication which causes me to sleep more now than ever before. I can tolerate being online no more than two to three hours at a time and my life activities have been greatly curtailed.
Look at the roundness of her face; it's similar to what I look like now. Listen to her speaking voice as interview goes on. This is my voice on good days
Some Famous People With Parkinson's Disease
Telling My Family
Two weeks ago, I finally called each of my sisters on the phone with the news I had kept from them for four months. They are going to see me over the Christmas holidays and I look very different than I did six months ago when many of them last saw me.
My face is rounder due to steroids and other medications. Other parts of my body have "plumped up" (hands, belly, feet) and will likely take them off guard. I am painfully slow doing simple things. My tremors are very exaggerated at the beginning of the day and as the medication kicks in, by the end of the day, my fatigue is all one sees. My voice is probably the most noticeable thing and because I struggle with volume, I often lose my voice by middle of the day.
I still need to work on time management to work on the computer. Levodopa (my medication) does help to deal with most of my symptoms but it doesn't prevent more brain changes that are caused by the disease.
Although I doctor hopped and wasn't very cooperative in timely appointments for MRI's, CT's and laboratory studies, my present doctor tells me that my disease is one that progressed rapidly from onset. The hoarseness and trouble swallowing that is usually seen in later stages is what I presented with on my first neurology consult with this doctor. By that time, I had been to two other doctors, and wasted valuable time.
My twin sister, Nancy, has known, of course, since the day I found out. She lives three hours away from me in Kissimmee, Florida; I'm in Fort Lauderdale, Florida. We see each other at least twice a month, talk on the phone minimum five times a day, and chat online even more than that. We will be 67 years old in January.
She likes to remind me that, as my twin, she knew something was brewing with me.
The changes in my voice were bad enough, but the tremors are worsening while trying to regulate the medication dosage. So this changed my whole game plan for getting through the Christmas holidays with my sisters.
You can always keep quiet to hide your hoarse voice, but hiding tremors that occurred anytime they wanted to was almost impossible.
When the doctor told me my diagnosis and what I was in for, of course I told Nancy first. She is my twin. But I had to work myself up into telling the rest of my six sisters, who live all over the eastern coast - in Florida, Pennsylvania, New Jersey and Virginia.
Our family Christmas is at Nancy's house this year in Kissimmee and each responded that they will be there with their families.
Since telling them, all my sisters are being very supportive. Some call more often than they did before, others send little notes and cards in the mail. I know they just want to feel like they are doing something, and I do appreciate it. But if this is a harbinger of things to come, there has to be a different game plan or I'm going to go nuts! I need them to treat me like they always did, not with kid gloves. I'll wait and see how the holiday visit goes.
Actor & Comedian Billy Connolly
- Billy Connolly has terrifying bouts of memory loss on stage - Celebrity News - Digital Spy
The comedian apologizes to audience members after losing track of his show.
Sample of Some Famous People With Parkinson's Disease or Parkinsonian Syndrome
Billy Graham (b. 1918), American evangelist (Died September 25, 2014)
Michael J. Fox (b. 1961), Canadian-American actor
Bob Hoskins (b. 1942), English actor (died April 29, 2014)
Linda Ronstadt (b. 1946) , Grammy award -winning singer
Billy Connolly (b. 1942) Scottish comedian, musician, presenter and actor
Casey Kasem (b. 1932), Former Radio disc jockey and voice actor. (died June 15, 2014)
Salvador Dalí, Spanish artist (1904–1989)
James Doohan, Canadian actor (1920–2005)
Francisco Franco Spanish dictator (1892–1975)
Adolf Hitler, German dictator (1889–1945
Pope John Paul II (1920–2005), Polish cleric, Pope of Roman Catholic Church
Deborah Kerr, British actress (1921–2007)
Charles Schulz, American cartoonist (1922-2000)
Terry-Thomas, British character actor (1911–1990)
George Wallace, former governor of Alabama (1919–1998)
Edward Winter, American actor (1937–2001)
Sir Michael Redgrave (1908–1985), British actor
Eugene McCarthy (1916–2005) American politician
Whit Bissell (1909–1996) American character actor
Robin Williams (1951-2014) American actor and comedian
About Parkinson's Disease
Parkinson's Disease is a disease that affects the muscles that control how your body moves. Some studies say it is genetic, inherited from family members, but no one in my family has it.
Five years ago, my parents died of heart disease within three months of each other. I have one sister who has Multiple Sclerosis, one who survived Breast Cancer, one who has Crohn's Disease, one who is an insulin dependent Diabetic, several take Cholesterol medications, I have Rhematoid Arthritis, Nancy has Degenerative Disk Disease and Rhematoid Arthritis. There are eight of us all together ranging from age 60 to 75.
Parkinson's Disease is considered a neurological disease affecting men more than women. Although the primary symptoms are listed above in my story, other symptoms come along as excess baggage. They include:
- excess salivation
- loss of sense of smell
- increased sweating (unlike hot flashes!)
- slower, quieter speech with a flatness to the voice
- skin problems
- urinary frequency and / or constipation problems
All of these things come with more medication and of course, side effects from those medications can be expected.
A support group for the patient and the caregiver are often suggested, especially as the patient's disease becomes more progressive. The level of care will change as will the stress level in the household. It helps to have support in this area.
Dosages in medications will be adjusted periodically, according to symptoms and latest test results. It is important to stay active in some way, even if it is not the way you used to be active (at the gym, walks, employment, church). Doing some small activity is better than doing no activity.
The National Parkinson Foundation is a good resource as is Michael J Fox's website as listed above. Please visit my friend Writer Fox's hub on Parkinson's Disease for an update on early symptom testing.
Another Interview With Linda Ronstadt
I will keep writing as long as I am able, which I expect to be for quite a long time.
Thank you for reading and for your support.
© 12/2013 Mary McShane
© 2013 Mary McShane