Looking forward to a sunny day

Now the pain has absorbed my whole body....I can barely type this message let alone find a comfortable position to sit in......and forget about sleeping.  I am going to see my doctor on Friday, but that is not soon enough.  It is weird, in the past when I have experienced pain, I always knew that a sunny day was right around the corner.....like the saying "this too shall pass".  But tonight, I am in a dark place and that sunny day seems to be an unobtainable goal....maybe it is because at night, you feel very alone.  Just you, the glow of your TV and the pain.    

Crank up the electricity

Today, my PD symptoms were so bad that I had to leave the grocery store in the middle of my weekly shopping.  I realized my rigidity and "raptor claw" is becoming more frequent and intense......so I will be starting to tweak my DBS programming this week when I see my Dr.  With DBS, you can go longer without taking medications, but that window of good "on" time is becoming shorter for me. Sometimes my meds are only lasting an hour, which means that it is time to adjust the electricity going to my brain. Here we go with the roller coaster of programming!  Wish me luck! 

I am thankful I have Parkinson's

Today I have to say thank you Parkinson's.....this does not happen often, so take note!  I know that my "on" time (when my meds are working and my symptoms are diminished) is limited and I have to be choosy as to who or what I spend my energy on.  So as of today I am not going to let meaningless conflicts or shady people take space in my head.  I will not waste my precious time worrying about things that I can not change.  For that, I thank Parkinson's....you have humbled me. 

Pins and Needles

Here it is again, 12am and I can not sleep!  Tonight I have had the great pleasure of having a sensation of pins and needles poking my body.  It is pretty hard to get relaxed enough to fall asleep when you feel like a voodoo doll!.....so I have a date with Conan and my dog "Crash".  They have gotten me through many nights!

Everyday is different

As people with Parkinson's knows, everyday your symptoms are different.   Maybe your medications don't last long, maybe your energy is low or you feel depressed.  Well take note everyone.....I am having a good day!  I went to the gym this morning and my medication stayed "on" the whole time.  Now I have so much energy and I am ready to tackle my day!  Ah, yes, the birds are singing, puppy dogs are playing and wait a minute....I think I see a rainbow!  

A blah day...

Today I went to the celebration memorial service of a close friend that was in my fitness class.  I understand that working with people that have Parkinson's means that I will be working with some who are elderly.....so losing someone is inevitable, but it still sucks!  Days like this give me motivation to keep meeting people that may need help.  I saw how much the "Parkinson's in Balance" program became a positive part of his life.  Tomorrow is my fitness class in South County and I will go knowing that there is a possibility of brightening some one's day!  And that is what keeps me going....

What does DBS stand for?

I have had many people ask me what is Deep Brain Stimulation (DBS) and what was it like to go through 3 brain surgeries?  Well, lucky you!  I have documented the whole process from my diagnosis to my surgeries.   The top picture, is of me when I had just had my "halo" placed.  This way the doctor can find exactly where to place the wires in your brain.  Kind of scary, but I tried to keep smiling the whole time!

The main concept of DBS, is where a person will have simulators placed in their chest area, and a wire will run from that unit to leads that are implanted in your brain.  These leads will give a continuous dose of electrical current to my brain to stimulate the creation and use of dopamine.  Which is the chemical that is depleted in your body with Parkinson's disease.  You do have to be awake during the procedures to communicate with the doctor if the lead is in the correct place.  Now that may sound totally creepy, but what amazes me, is the fact that someone even thought about running wire up to the brain and running electrical current!  I am glad that I was not the first person to get it done!

Can't Sleep

It is 3:30am and I am awake.  The curse of Parkinson's.  It is usually difficult to get a full night of sleep, some nights are better than others.  Tonight it feels like I have needles poking me all over my body.  It is pretty difficult to get comfortable enough to sleep when you feel like a voodoo doll!  I am hoping to fall asleep soon, I have my walking support group today and I try to remain positive when I am around other Parkies.  I mean really....no on really wants to be the party pooper!

Dystonia....no, it is not a new brand of cosmetics

This morning, I had a bad case of Dystonia, my husband calls it my "raptor claw".... so I thought I would whip out my flip video camera and share.  Wikipedia definition: "Dystonia is a neurological movement disorder, in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures."  Allison's definition: Ouch, this sucks, damn raptor claw!

First of many blogs....

Why does anyone start a blog?  I guess my opinion is to share and learn from others.  I am not really sure why I began blogging, but I felt that it was time to share what it really is like to have Parkinson's Disease at age 33.  The good, the bad, and everything in between....enjoy the journey.