Posted by: PD Warrior | July 14, 2007

Scared Stiff

Well, scared at least. The stiffness comes from the Parkinson’s itself, and not necessarily from the fear/anxiety I have been having as of late.

Not everyone realizes there is more to Parkinson’s disease than just the slow movements and the ever annoying tremors. There are balance problems – walking across the street is no longer a “no brainer.” First you have to get those legs moving. (So far I don’t have that problem) Then you have to move quickly to get across the street before the traffic light changes. (Trust me,  at times that is easier said than done) And finally, when you are on the other side, you have to quickly tell your legs to pick up your feet higher than normal or else you will trip over the curb. (I myself have become very good at the “tuck and roll” maneuver- a trick I learned in my skydiving days that has served me well since the onset of PD)

Then there is the emotional impact; a part of the disease that has three distinct components: 1)The way you feel emotionally  2) The way other people think you must be feeling emotionally  3)The way your loved ones and care givers feel emotionally.

Let me explain…

As a person suffering from Parkinson’s disease I tend to run the whole gammut of emotions from extreme depression to outright euphoria. Sometimes the depression is because of the PD, other times it is not. The euphoria seems to be my way of combating the depression. Many people with PD are described as manic depressives for this very reason, which brings me to number two…

One of the “textbook” symptoms of Parkinson’s disease is what those of us in the medical field call the “Parkinson’s Mask.” The diseas doesn’t just effect the muscles in the hands, arms and legs. It also effects facial muscles, not so much by making them twitch, but by making the muscles difficult to move. This lack of movement gives the person’s face a “mask like” appearance, making it almost impossible for anyone else to know if the person is happy, sad, angry, or just plain indifferent. I can’t tell you how many people tell me not to “be in such a bad mood all the time” just because of the look on my face. Or else they will tell me to smile when I already am.

Then there is the emotional effect this disease has on family members and care givers. They are just as full of anxieties/fears and sadness as the person suffering from the disease. In the case of my own family, they often try to treat me with kid gloves. They don’t want me to see their fears so they try to hide them. Sorry guys. I have news for you…you can’t hide them from me. I know you all too well.

But to me, the worst is yet to come. This disease can also effect a person’s memory. The memory loss starts out as nothing more than a mere nuisance then gradually progresses until eventially it turns into Parkinson’s related dementia. This is what scares me the most. I seem to be increasingly forgetful.

Perhaps it is nothing to be worried about, but it has gotten to the point where my wife has noticed it, along with one or two of my friends. If it keeps up, I am afraid I will have to quit my job and that is something I just can’t afford to do right now. I have my wife and children to think about. Not only do I need to support them, but as a nurse I have taken care of many, many people with PD related dementia and I can’t stand the thought of my family having to see me like that.

Advertisements

Responses

  1. Hi Joe,

    It must be particularly difficult because you’ve worked with PD patients and seen the devastation of this disease.

    And don’t you hate that PD facial mask that makes us look like we are mad all the time.

    Kate Kelsall
    Shake, Rattle and Roll
    http://katekelsall.typepad.com/my_weblog/

    Like

  2. I have written another post recently that could be a copy of your post, as we are both feeling about the same way right now.

    I’ve been out of the blogging loop for some time now, but if you have the time, I have a favor to ask of you. At the request of a reader, I have a new post discussing some of the symptoms I had over the years that may have been early undiagnosed signs of Parkinson’s. I’d appreciate it if you would add your comments to that post, as I think it could be a very useful topic for PWP to share.

    http://parkinsons.dirtybutter.com/blog/2007/07/earliest-undiagnosed-symptoms-of.html

    Like

  3. Thanks for taking the time to add your comments to my post, Joe. Every person with Parkinson’s is different from every other PWP, but you and I seem to be having quite a few similar problems. Take care, my friend.

    Like

  4. PD really stinks. It really does. As a nurse and a caregiver of someone who is in the end stages of this disease….I can’t imagine (maybe I can) what you are fearful of.
    Thanks for writing about it.
    It helps all the rest of us understand.

    Like


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Categories

%d bloggers like this: