My Early Onset Parkinson’s

When I was 42, I was diagnosed with Early Onset Parkinson’s. I started having obvious signs that something was off with my neurological system by the time I was 39 years old.  (I am now 45). It took lots of testing and over 3 1/2 years to finally get a correct diagnosis.It was a long, hard road and even though I was not pleased with the diagnosis, I was relieved to finally know what I was dealing with.  How was I supposed to deal with an unknown enemy?  Now armed with my diagnosis, I could figure out how to confront it head-on.

I had gone through the ups and downs of “getting close” to a diagnosis and then discovering that it was not the correct one.  While it was aggravating when it was discovered that I STILL did not have a proper diagnosis… it was a colossal relief at times.  Some of the possible conclusions were: Lupus, Fibromyalgia, Multiple Sclerosis, Muscular Dystrophy, Peripheral Neuropathy, a brain tumor, or simply “just in my head”.

Because of my age, Parkinson’s was never even mentioned until my neurologist was at a loss for what it could be and then it just hit him that it could be Early Onset Parkinson’s and he was correct!  After a couple of weeks on Sinemet it was clear that my issues were indeed Parkinson’s related.

I evidently also have another “neurological issue” that has not been diagnosed, yet.  My neurologist wanted to address the Parkinson’s first and has talked about sending me to a specific specialist in San Francisco.  My internal medicine doctor still thinks (along with two other previous doctors over the last 15 years) that I have Lupus, too.  He says that I could  be one of the very rare people who test negative, but actually have it.   Leave it to me to be unique!  lol

 
Because of this other undiagnosed neurological issue that I evidently have, I am not totally certain which symptoms I have are from the Parkinson’s and which may be from the unknown.  Also, symptoms of Parkinson’s can be different in each person.
 

My symptoms are much better when I have not missed a dosage and am not sick and/or stressed. If I am sick or stressed, I might as well have taken a placebo, because it basically nullifies the effects of the medication in my system for some reason.

My Parkinson’s Symptoms:

One of my main symptoms is the inability to stand with my eyes closed or in the dark.  If I am not holding onto something, I will go down.  I do not get dizzy or anything.  I just suddenly fall.
 
I often have issues with swallowing.  I have trouble getting solids from the back of my mouth and down the pipe unless each bite is followed by enough liquid.  My tongue acts like it does not have enough strength to get the solids “shot” into the correct place.  This is better now that I am on Sinemet, but I still have problems from time to time and with certain textures (which I try to avoid as much as possible now).  I also use a head placement trick that a specialist taught me that helps with swallowing.  Textures I still have issues with are mostly foods that are dry, falls apart, or binds together too much.
 
I sometimes have trouble talking, especially if my mouth is too dry.  I do not understand why that makes a difference, but it definitely does for me.
 
I have to build up a momentum when I start to move.  Until I do, I often walk in what I call my “Tim Conway walk”.  You know… the one when he is a really old man and just shuffles along.  I usually feel overly stiff and achy, too. 
 
When I try to grasp something small like when using scissors, I get a rather pronounced tremor.  My handwriting has gone way downhill, too.  I used to have really nice handwriting.  Now, it depends on the day.  Sometimes it is close to what it used to be and sometimes I have trouble reading it myself.  I also have some tremors when resting, but those do not bother me as much at this time.
 
I discovered that I now have the symptom of a reduced arm swing on one side when I walk.  If I am not carrying something, my left arm is usually pulled up, bent, tense, and completely still while my right arm is loose and swinging.
 
I often am wobbly and tend to fall a lot. I have gotten more proactive about preventing falls by trying to walk along a wall or railing as much as possible in order to be able to steady or catch myself.  
 
I frequently walk into walls/doors and miss when I try to move my hand to a certain location.  I think that I am going to make it, but I somehow misjudge or my limb doesn’t do what I am telling it to do.  My brain and my body do not always speak the same language.  My brain could be saying to my leg to lift up and unless I move it with my hands, it may not get there.  I regularly have trouble with things like buttons.  A funny post about my hands having a mind of their own can be found here.
 
If I do “too much” in a day, I lose the ability to walk correctly or pick up something small.  I have lost some muscle control throughout my body.  When I have done “too much”, my body basically stiffens up like arthritis in my muscles or something.  I tend to wear completely down by mid-afternoon most days and all of my symptoms definitely get worse as the day goes on.
 

I get shooting pain going down my legs and into my feet, especially in the late afternoon or evening.

I still have issues from time to time with a strong energy in my brain.  I wrote a whole post about this here.

My feet were always numb (and often my fingers, too).  This is much better now that I am on the Sinemet, but this medication is not supposed to help with this.  It is also not considered a symptom of Parkinson’s.  Regardless, I am happy that it does for me.  I still have this symptom when my medication isn’t working for me (as stated earlier).  When it happens, it feels like when a limb is just starting to have some feeling again.  That painful part right before it gets better…. but it is constantly at that level.

All of that said… I think that I am doing rather well.  I do not think that it has progressed much, which is a good thing!  I believe a lot of it has to do with my attitude.  I have also gone gluten free (which some people believe has really helped their Parkinson’s, especially Early Onset people). While Parkinson’s has slowed me down a bit, it hasn’t really changed my goals.  

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