What it like having Parkinson’s –
I have been asked about it before but I do not like to complain or talk much about it. That said, I do not want nor is it my intent
to make people feel bad for me, but I do think that it is necessary at this time to tell just what happened to me to enlighten those who do not understand why we stopped doing things, stopped going places and ultimately ended up where we are today.
I was diagnosed in 2010 after 10 to 12 years of wondering what was wrong with me and backing off from things I loved, like the York Fire department (fearing that I was going to make a mistake or hurt someone). In order to
receive this diagnosis you must meet the following criteria:
To diagnose PD you should make sure that parkinsonism is present, that there are no other features suggesting a different condition, and that parkinsonism
improves with dopaminergic medications.
To diagnose parkinsonism you need to establish bradykinesia and at least one of the following: muscular rigidity, tremor, or postural instability.
I obviously had the bradykinesia; I had the resting tremor along with a third symptom (dystonia), in addition to postural instability. So, after several years of being told that I had MS but it was not showing up on the scans yet, and being checked
for tumors, blockages and stroke – I was diagnosed with PD.
What does all this mean? Well, if you’re like I was, you probably thought of people that just shake, which is far from the truth. There are
a lot of things that normally happen with Parkinson’s disease and a vast array of symptoms that it can include just about anything you could imagine; these vary from person to person depending on the area of the brain (basal ganglia and the substantia
nigra) affected. The following are most of mine:
I remind myself of my dear late friend Harvey who always said, "I got one speed, SLOW" and it makes me smile!
Dystonia is a neurological movement disorder syndrome in which sustained or repetitive muscle contractions result in painful twisting and repetitive movements or abnormal fixed
postures. The movements may resemble a tremor. Dystonia is often intensified or exacerbated by physical activity, and symptoms may progress into adjacent muscles.
It can be awful, I know and I thank God mine
is not as bad as it is for some people. I try to accept it and move on, thankful that it is not worse.
• Resting Tremor
Shaking while limb is in a rested postion.
good for an adult joke - use your imagination!
Shaking, twitching muscles active or at rest
Can pop up anywhere and make you feel like your insides
are going to burst. But, it is always a good conversation piece for special adult activities!
(Make a joke out of it and try to laugh)
• Postural Instability
I stumble, walk into doorways and constantly lose my balance,
can’t stand on my toes or heal or walk toe to heal. (Pretend to be intoxicated, unless of couse law enforcement is present, it can be fun; it's what you make it!)
• Foot drag – I developed this and had to stop working after becoming ill with a fever which started the foot drag and worsened
my existing cognative symptoms. I wear out shoes fast, LOL.... (I love it when the grandkids and other kids try to mimic the walk)
• Cognitive Dysfunction/ Cloudy Mind / Slowness of Thinking/Dementia
Loss of intellectual
functions such as thinking, remembering, and reasoning of sufficient severity to interfere with daily functioning is very frustrating.
You can remain frustrated or try to remeber to take a break (family
help may be needed) or find a way to laugh it off)
Almost always present. Rest/Sleep when you need to, friends and family understanding of why your not up to it is very helpful. Try to bring activityies
home, where you can always take a break and be in your comfort zone, but make an effort to go and keep smiling if posssible - Yes it can be hard to do when your eyes are shut- LOL!
When you forget what you’re doing, how to do it, unable
to do it as fast and get confused, this follows. (It can be difficult, but try to think of those less able and be thankful because your not as bad off. Remember, it's hard for your family too! - With that in mind... I'd like to kick my own butt right now and
would if I was not so damn stiff!)
• Visual Disturbances/ Double vision
My vison becomes doubled and cloudy at close range and causes difficulty reading. (So you no longer have to pay to see a ghost flick - what did you think
in that dark car trunk when attempting to see a drive in movie for free? The point is, try to laugb it off and enjoy your family, choose to think about good times you have had and not on the bad!)
and Swallowing Difficulties
Muscles in the back of your throat weaken and food, pills, etc. can be there without your knowledge. (If you’re talking while eating or just take a breath, I have inhaled
cake, pills, small fragments of meat and choke on the juice of fruits and melons when eating. I try not to talk while eating - hard for me to do.)
(Tilting your head slightly forward before eating juicy fruits and
melons or soups can prevent this. But, if my family thinks i am gonna stop talking, they can kiss
me on the cheek; right or left, it's their choice!)
I think we all know what this. (Is becoming more frequent for me, butt who gives a ! Seriously, it can be serious if it lasts too long, get to your doctor!)
• Change in taste and
Nothing tastes the same and I smell things others do not - don't have a good answer, use more spice?
• Bladder dysfunction/leaking
I just have to be near the rest room and it starts running out of me.
I have learned to start concentratingon on holding
it before I go there. This and stopping the dopamine agonist has pretty much totally eliminated the problem!
A built in feature of the disease, and there is no extra charge!
It is going to happen and sometimes you can deal with it more easily than others. Try making a list of all of the bad things in your life and compare it to a list of all the good things and for what you can be thankful for in your life. Look at that
bad list one more time and know that no matter how painful it is to look at it, that you will not let it rule you, then burn it. Know in your heart and in your mind as you watch it burning, that you choose to not let it burden you no longer. Set it free
and know how much better it is to always look to the good side. There will always be things on our mind that tend to bring us down, but always remeber the good and keep that list with you to read what you wrote if you start feeling down!
• Excessive daytime sleepiness
When it hits, I can’t keep my eyes open, but they usually won’t stay closed because of jerking and the pain of Dystonia
It's gonna be what it's gonna be. Accept it and
get some rest.
I usually rest well for a couple of weeks after they adjust my medication, then it’s back to getting as little as 3 to 5 hours sleep when I wake with jerking with stiffness and pain. Sometimes I can go back to bed after
an hour or two, but other times it lasts into the morning
Make sure to keep your neurologist informed!
Sleep Behavior Disorder
1 hour until your brain reaches REM; I wake almost exactly one hour from the time I go to sleep with the above symptoms. Is better with medication adjustments
Make sure to keep your neurologist informed!
• Restless leg syndrome
uncomfortable especially at night when you crawl out of bed, legs and body very stiff and with myoclonic jerking. You’re unable to sit or stand for any length of time and usually are wrenching/stretching trying to relieve the aching/painful stiffness.
• Excessive sweating
Better now with changes to medications, but can start sweating without doing anything
and to the point where you could ring water out of my shirt
• IMPULSE CONTROL DISORDERS
this disease with what is known as Dopamine Agonists. The Dopamine Agonists help the Dopamine in your system to work and allow you to take less Carbidopa-Levodopa medication that’s produces the Dopamine needed in your brain. Increasing levels of Carbidopa-Levodopa
can lead to Dyskinesia. But the dopamine agonist alters your mind which can have devastating effcts.
I was taken off the Dopamine Agonists and my Carbidopa-Levodopa was increased. I believe that I am starting to
get some of these movements but am uncertain if it’s from that or existing issues. But, far better this than the Dopamine Agonists as they have caused the financial ruin of many people including myself.
questioned if therapy or group meetings were needed and we were told by my neurologists office, that “they would not help, don’t blame yourself, It’s the medication.” We were uncertain of this, but after the medication had totally cleared
from my system, it was like waking up from a bad dream. I still like to play games on Facebook, but just the thought of playing for cash makes me sick to my stomach and I do not even consider it.
Prior to getting
off the medication, I questioned the Dopamine Agonist Compulsive disorder issue in an online support group of 2600 people that I had joined called PAWW (Parkinson’s Awareness World Wide). I received responses from many, telling how they had lost all
before being taken off the medication, included the couple that started the support group PAWW and the reason I started my webpage http://www.gamblingandparkinsons.com/.
A true addictive compulsive gambler would not have asked for help until everything was lost and in the process would have lied to friends and family and
taken from them without repaying or caring. But in the people in whom the compulsive behavior was induced from medication this is not the case; they were honest, confronted it, asked for help, and the compulsions are no more.
I cannot begin to tell you what it is like to wake up from this nightmare and realize what has transpired, thankful that it is over, but totally devastated by what it has caused.
As Paul Harvey was known
for saying “And now you know -- the rest of the story” at the end of his commentary.
Now, you do know the rest of the story. You will still see my smiling face and I do not wish to be looked upon any
differently because of this. But, if the female population feels a need to sooth me, who would I be to stop them in fulfilling their natural abilities.
More seriously, I felt that I owed an explanation to
a lot of people who have wondered why we stopped doing everything, how and why we are where we are today and why we/I do not do some things now. It’s not that I don’t care, it’s that I do!