This is my story and I’m sticking to it.
In the year 2004, I was so excited to be opening a mortgage broker shop and building a beautiful home for my family in the country.
Then in the year 2005, I started to become ill. There were days that I could hardly get out of bed or walk, yet alone go into the office and meet with clients. After several tests and exams, I was then diagnosed with Interstitial Cystitis. I started taking several different medications, worked on dioxin my system and body from certain foods, went for pain treatments weekly for about 3 months. What a nightmare!
In 2007-2008, the real estate market was starting to change and since this was happening and I was ill, we decided it was best to close the business.
After a while on the medication, I started to feel better. Then, for about two years, I did contract work for several different companies. I was sleeping a lot after work. I thought I might be getting a little depressed, but I kept on chugging at it.
Then I got a call from a logistics company and took on third shift. After a couple of months, I started getting ill again. This time it got worse and I was very sleep deprived and not eating right.
Then the twitching in my hand and in my left thumb started. I was so scared that I tried to hide it from my family and friends. Then, one day my husband noticed me shaking and told me it would be best to go to the doctor.
After several visits to different doctors and being asked to walk a couple of times back and forth down the hall, to make my fingers to touch my thumb as fast as I could and short physical exams, I was diagnosed with Parkinson’s Disease, a chronic progressive illness. I went numb after being told. Then, all I could think about was how to tell my children. At that time, Kristina was 18 and Brandon was 12. What was I going to be like; could I walk, talk and feed myself?
Then, I realized I wasn’t going to die from this illness and that I need to learn as much as I could about Parkinson’s disease. So I went to the library and started checking out books and going on-line to find out as much I could about this disease. My favorite book was Parkinson’s disease for dummies.
I definitely have Parkinson's disease. It is not contagious or hereditary. No one knows what causes it, but they do know that some of the dopamine cells in the brain begin to die at an accelerated rate.
The 3 key signs of Parkinson's disease are tremor (shaking) at rest, rigidity, and slowness in the initiation of movement (called bradykinesia). Of these features, 2 are required to make the diagnosis. Postural instability is the fourth key sign, but it happens late in the disease, usually after having PD 8 years or more.
Tremor
· Tremor usually begins in one arm and may start and stop. Mine started in the left hand and is now in my left foot.
· As with most tremors, it worsens when under stress and improves during rest or sleep. Plus, when I am very cold, I start shaking more easily and it is hard for me to stop. · After several months to a few years, both arms may become affected, but the beginning asymmetry (lopsidedness) is often maintained. I have problems in the left side. · PD tremor may also involve the tongue, lips, or chin. Maybe this is why I have problems sometimes with my speech. · The characteristic PD tremor is present and most prominent with the limb at rest. This happens to me when I try to sit still. · The tremor may appear as a pill-rolling motion of the hand or a simple oscillation of the hand or arm.
Rigidity · Rigidity refers to an increase in resistance to someone else moving a joint. · The resistance can be either smooth (lead-pipe) or start and stop (cog wheeling). (Cog wheeling is thought to be a tremor rather than rigidity.)
· Having someone else flex and extend your relaxed wrists tests for rigidity
· Ridgity can be made more obvious with voluntary movement in the opposite limb. · The tremor may appear as a pill-rolling motion of the hand or a simple oscillation of the hand or arm. I have noticed this happening sometimes.
Bradykinesia · Bradykinesia refers to slowness of movement but also includes a lessening of unplanned movements and decreased size of movement. I am very slow.
· Bradykinesia is also expressed as micrographia (small handwriting), hypomimia (decreased facial expression), decreased blink rate, and hypophonia (soft speech). So far, I am doing fine in this area.
Postural instability · Postural instability refers to imbalance and loss of reflexes used to keep you upright. I fall when stepping up.
· This symptom is an important milestone, because it is not easy to treat and a common source of disability in late disease. Other symptoms o You may experience freezing when starting to walk (start-hesitation), during turning, or crossing a threshold such as going through a doorway. You should see me turn, sometimes it looks funny.
o Flexed postures of neck, trunk, and limbs may occur. o Altered mental status generally occurs late in PD and affects 15-30% of people with PD.
o Short-term memory and visio-spacial function may be impaired. If I forget your name, please understand. o The onset of PD is typically lopsided, with the most common initial finding being an asymmetric rest tremor in one arm. About 20% of people first experience clumsiness in one hand. I can’t count how many glasses I have broken.
o Over time, you will notice symptoms related to progressive bradykinesia, rigidity, and problems with walking (called gait disturbances). I have been collecting canes because I have already started experiencing gait disturbances. o Some people experience a subtle decrease in dexterity and may notice a lack of coordination with activities such as golf, dressing, or climbing stairs. This is me.
o Some people complain of aching or tightness in the calf or shoulder region. o The first affected arm may not swing fully when walking, and the foot on the same side may scrape the floor. o Over time, posture becomes progressively flexed and your stride becomes shorter leading to a shuffling gait. o Decreased swallowing may lead to excess saliva and ultimately drooling.
o Sleep disturbances are also common. Am I really supposed to sleep?
Exercise is very important for people with PD. I need to walk each day. Two to three miles would be great, if I could make it that far. I may be slow at walking, but I will eventually get there. Stretching, bending and exercise must be done daily. “Move it or lose it” is the saying around people with Parkinson’s. Please feel free to come see me and we will take a walk around my garden or down to the pond to talk. I have limited my driving due to the fact that I have sleep attacks and am trying to get this under control. I’m not sure how much longer my car will continue to bounce off of the mailboxes. They're everywhere!
Now that you know more about Parkinson’s disease, please understand why sometimes it seems like I am not all there.
I have 90% of all the symptoms of PD. I take approximately 15 pills a day. These pills are to control the symptoms. Unfortunately, there is no magic pill to take this illness away. Some days are good, some fair and some really bad. However, I do my best to stay positive every moment of the day.
I would like to thank you for taking the time to read my story. It is greatly appreciated by me and my family.
“Ease the burden, and find a Cure” for Parkinson’s disease.
Mary Killian
