My Turn: Hiding Parkinson's disease became her worst symptom

My Turn: Hiding Parkinson's disease became her worst symptom

Politics......

You know when you hear that politics are in everything, it is sometimes hard to believe, but I have found out the sad truth. Ever since I chose to start a Parkinson's program, I have found that national pd foundations are not very excited to help.....in fact they will passive aggressively try to trip you. It is ok though, unlike these individual's, I have not forgotten why I am in the field.....to help people struggling with Parkinson's. Hope they get on the same page soon,it seems like such a waste of energy.

Dance Fever

I have been trying to try things in my life that keep me moving and bring me happiness.  So my next adventure was east coast swing dancing.  I started lessons about 4 weeks ago and let me tell you.....when I dance, it does not feel like I have Parkinson's.  It feels like I can just enjoy the movement and music and forget about the fact that I have a neurological disorder.  I know I might not always have this luxury as I my health declines, but for now, I strap on my dance shoes, and enjoy the moment.  

The massage therapist named Raul

Every two weeks I enjoy a 90 minute massage. It makes me feel somewhat normal for a couple days....what ever works!! My friends think I get this amazing rub down from a tan exotic man named Raul, or someone exotic. The truth of the matter is, Raul is actually a 95lbs blonde girl going to the local community college who has the magical gift of strong hands. It is a moment when I can be selfish and take time for myself. Everyone needs to find their Raul!

Can't talk about it...

I can not state details, due to confidentiality......but this week, as a therapist, I have sat and absorbed so much emotion.  It seemed like the world was going through pain and all I could do is listen.  I am blessed....but there are some days that I wish I have magic wand to make every one's pain go away. 

Social Network is everywhere!!

As much as I get annoyed with the immersion of Facebook, I do have to admit that it is a great way to keep people with Parkinson's communicating and encouraging each other.  With that said, I have created a page for "Parkinson's in Balance" which will help with updates and comments about the program I run.  Please check it out and hopefully post something on the "wall".......let's get this page moving!

http://www.facebook.com/home.php#!/pages/Parkinsons-in-Balance/216260998411944

Another year..

I used to prepare months ahead of time for my birthday.  Where would I hold my party?  Who would I invite?  But as you get older, you find yourself forgetting how old you really are.  Isn't it crazy that when we are younger, we count half years as monumental moments.....i.e. I am 6 and a half years old.  But now, it takes me a moment to remember my exact age!  Happy Birthday Me!

The switch

I guess that it happens to everyone at some point in their life where the switch happens.  When the children begin to take care of their parents, who had in the past been the caregivers.  With my Dad being ill, I have know learned what it feels like to feel like the parent.  Such worry and fear, but most of all, you would like to have the power to make everything all better.  It is one of life's cruel jokes.

The other side of the scalpel

Due to my medical history, I have always viewed Doctors as mythical creatures, like a unicorn.  I remember the first time that I saw my surgeon shopping with his family at the grocery store.  I stared at him like I had just seen the white rabbit from "Alice in Wonderland".  How could he possibly be shopping at the store that us mere mortals went for groceries?

But now that I am working out of a Neurosurgeon's office, it gives the word "Doctor" a whole new meaning.  They are just normal people like you and I.  Life's little lessons....

Oh Barbie....

I was wondering......if Barbie is so popular, why do you have to buy her friends?  Life's little mysteries!

You never know what you are going to pick up

This video made me laugh so hard, I almost peed my pants!  Just shows you......in life, you never know what you are going to pick up!

Life's Contract

Today I met a couple that are dealing with a recent diagnosis of PD.  I remember the moment my Doctor told me I had Parkinson's......it was like watching a movie......this can't be my life!  When I signed up for this journey, this was not what I expected.  Guess I should read before signing, maybe it was in small print at the bottom of the contract!    

Day time TV

I love day time television.  There is something about watching Jerry Springer that makes you instantly feel better about your life!

Moments that you need to embrace

My weekend has been very full of important events!  On Friday night, my husband and I went to the "Erase MS" gala in Los Angeles.  This event was important, not because of the awesome dress I got to wear, or that my makeup was perfect (or pretty close to perfect!).  It was important because I was surrounded by people who were faced with the challenges that come with Multiple Sclerosis and it gave me insight.  I took that energy to the next day, when my husband and I went to the APDA Zent-athon 5K walk for Parkinson's disease.   



As we rounded the last loop of the walk, I could feel my body getting tired and each step became a little heavier. I have to admit, I did think about quiting the second half but I looked around and realized that I was surrounded by my friends and my husband.  I felt safe and knew that if I needed support, they would be there to help.  So I took some Sinemet and a drink of water and kept pushing forward.  When I finished the 5K, I had a moment where I felt incredibly fortunate.  For the last two days, I had been around people who have unimaginable struggles on a daily basis all alone.....no family, no husband and sometimes, not even a friend. We become so focused on our own pain that we miss the moments that we need to embrace.  There is not a minute in my day that I have no one to lean on.  I know that when I feel weak, I could look to my family, my friends, or my husband (my rock) and I will find the support I need to keep fighting and for that moment of realization......I am grateful.    

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.