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Four Years

Four years since my diagnosis.

This year has been hard. My symptoms have really progressed. I have real memory issues now. Short term memory recall. I am almost always stiff now and my tremor has gotten worse. Walking is difficult now but I still trudge on.

I am taking Sinament now and Tasmar. Losing the Neupro patch was a huge blow for me. I am still coming to terms with it.

Work has been hard. I am almost always in some sort of pain. Symptoms are appearing on both sides of my body now. Depression and apathy remain a struggle and energy to get through the day is lacking. Most days I need a nap mid day.

I am now having real serious conversations with myself and Paul about how much longer I will be able to work. We shall see where that goes. I have started the process of gathering information about SS disability.

Despite all this, my mood remains positive. I am so grateful for all I have in my life. My amazing husband, my beautiful son and so many incredible friends and family. I am truly blessed. Every day is a gift and I choose to make the most of it. No sense in dwelling in the sorrow and the pity party for myself. Life is too short.

I try to enjoy my time with the people I love. I can not tell you how much I love my husband. It is beyond words. Every day, every year my love for him grows deeper and stronger. I am so lucky.

My son is growing so fast. He'll turn 13 this year. A teenager. I want to enjoy his growing up. Watching him discover what life is all about. Hopefully guiding him in the right direction along the way. He is a wonderful boy. Caring, smart, inquisitive, loving. I hope he never loses those qualities.

Well, that's it for now I guess. Whatever this next year brings, I know I will make it through with the love and support of those around me. And although it is a bit daunting, I am looking forward to all the joys this next year will bring.

Toodles!

Day 6

So, you knew this was going too well...

Today, I feel the stiffness again. In my face, in my hip and in my fingers. Meds make it better but not the 100% I felt on the combo and not as good as when I was on the full patch.

Wearing off happens about 30 min before next dose (as of noontime - only 2nd dose today).

Of note, I am tired (woke up early) and my Aunt Flo is due soon. Both can effect the stiffness.

Also of note, the tremor is still gone. Which is good.

We shall see what the day brings.

Day 5

First day with out the patch.

Was good most of the day. Started to notice a wearing off about 15 min b4 my next dose was due.

Around 4pm, really noticed the stiffness returning to my body.

Well see how it goes.

Day 3 & 4

Both days great.

Had my concert on Sunday. I stood the whole time and barely any soreness or weekness.

Yay!

DAY 2

Still doing great. I love this med. I feel so amazing. My body is so fluid. I notice my fingers are not stuck together. My face is not tight. My back doesn't hurt.

So far so good. Still using 1/2 the patch. I will until Monday.

Started Stalevo today

Started today.

Felt really dizzy all day and really really nauseous. Then I realized the Dr. told me to cut the patch in half when I started the Stalevo.

I cut it in half and within 30 min felt great!

Definitely feel a HUGE difference. I feel no stiffness in my body at all.

Guess this means I really have PD... This is the gold standard.

Happy New Year...a little late.

Well, 2007 ended with a bang.

December was the month from hell. Everything was such a mess. Major leaks in the house, near financial ruin, Christmas almost nonexisitant, keeping husband from completely going off the deep end...

Well, leaks stopped for now..until the next major ice storm
Financial ruin was averted by taking a loan from my 401k
Chirstmas ended up being not so bad.
Husband is still barely hanging onto sanity.

I've been doing ok. Physically I am doing fairly well. Probably best I've been in a long while. I don't want to jinx it so that's all I'm saying.

However, today is a tough day for some reason. I am just so sad today. It started on Friday actually and has just gotten worse each day. I spend the better part of yesterday afternoon crying. I just feel very unloved right now. No reason I should feel that way, I just do. My self confidance is very fragile right now. I feel like I am back in HS. I feel like noone likes me and that noone wants to be my friend. I even fell this way twords my husband. I know...it's odd and completely untrue. It's just the way I am feeling.

I received some news yesterday that I am coming to terms with. I feel guilty for the way I feel about it but it's the way I feel and I can't deny what is a gutteral reaction. I just feel like I am the last on everyones list these days.

Ok, pity party over.

On an up note, I have begun exercising and eating better. Hopefully this year will be better in that area. I have a goal in mind and it is a reasonable goal. I just need to keep making good choices. I hold the power and the control.

I need to start having some me time. Being selfish isn't always bad. Right now I need my world to be about ME. I know that may piss some people off but it's just the way I need to be right now.

Ok, back to work.

Toodles,
Janice

My life is a bad commercial...

It all begins with having no money to begin with and having creditors calling on a daily basis and having things shut off because we can't pay the bills...Then when you think life can't possibly get any more stressful, it does. Here is the past two weeks of my life in a 30 second commercial:

Refilling the various PD meds that I must take to deal with the horrible disease... $500.00

Purchasing a new dryer because the old one gave out a puff of smoke on Sun and died...$950.00

Repairs for minivan because the brake light won't work and the windshield wiper fluid is busted....$250.00

Having no money for Chistmas and then watching husband have a nervous breakdown (for real) because of the stress of trying to figure out how we are going to pay for everything....PRICELESS.

If I don't laugh then I'll cry again...and I'm tired of crying. Just trying to remember that even despite our troubles, we are still better off than alot of people who have nothing. (we might be some of those people soon...but I digress..)

Toodles!

Clearly I have not been doing well

so, my 38th birthday was Wed. It pretty much sucked. The older I get the harder it gets.

I have been in a deep depression the past two weeks. BAD... can't shake it. Trying though.

As a result...and my EMOTIONAL EATING...I have gained 10 pounds. It really does boggle my mind how fast you can gain weight but how LONG it takes to lose it.

I am trying to get back on track. Or, at least off the one I'm currently on.

I have been a MAJOR BITCH to my family. I am so short fused...

I hate this time of year. November historically is just not a good month for me. It was the month when I tried to commit suicide at the age of 15, it was the month that I found out I had PD and that I was going to have a miscarriage...other various boughts of depression over the years always seem to happen in NOV. Shame it's the month my birthday is in because I do so love birthdays.

This year, due to financial restraints, I banned Paul from getting me anything. He did get me a card - a really sweet one, given the way I've been treating him - and a cake.

Thanksgiving is next week. I am trying to remember all that I am thankful for. There is much, I know. But, in the deep dark place that depression lies it is hard to remember them.

So, I take a deep breath and plunge into another day.

Toodles.

Happy Anniversary?

Three years. Three years I've lived with this now.

Paul said to me the other night (during our date night dinner) that I am doing amazingly well for someone 3 years into it.

I guess he's right. For the most part I am doing good. Doing better with this new med. It's still hard to accept that I'll never have the full function of my body ever again. However, I have learned to live with it and manage around it. I still sometimes get angry at it, but I remember all the good I have in my life.

So, three years...here's to many, many more!

Toodles!
J

Me to a T

A fellow PD'er recently posted this on her blog. She wrote it about herself but it describes me to a T!

The Less Visible Symptoms of Parkinson’s

When people think of Parkinson’s Disease (PD), they usually picture the physical manifestations of this movement disorder: tremor, shuffling steps, stooped posture, stiff and rigid movements, poor balance and dyskinesia.

I and others living with PD take pride in our intelligence and education. Most of the people I know with PD have at least a Master’s degree. A doctor from China said that all of his PD patients in China were nuclear physicists and that I was in good company. I didn’t feel reassured.

Margery H. Silver, Ed.D., is a neuropsychologist, and has a husband with PD. She wrote a terrific article entitled Cognitive Changes in Parkinson's. It is informative, practical and succinct including strategies for circumventing or managing these cognitive changes. Dr. Silver is also the co-author of Living to 100: Lessons in Living to your Maximum Potential at Any Age.

Dr. Silver categories the cognitive changes from PD as follows:
Bradyphrenia (slow thinking)
Attention and concentration
Executive functions
Memory
Visual-spatial abilities

Some of these cognitive changes from PD have impacted my behavior as follows:

Bradyphrenia (Slow Thinking)
My thinking is sometimes slow in answering a question, writing this blog, doing word jumbles, crossword puzzles, and playing Scrabble. I will eventually come up with an answer or solution, but it may take awhile. This is particularly frustrating because I previously prided myself on being an instant, quick to respond and decisive person.

Attention and Concentration
My ability to concentrate and to ignore distractions has decreased with PD. I can no longer simultaneously read and listen to music (instrumentals seem easier but songs with words are impossible). When I was working, it was difficult to deal with the constant interruptions by people who arrived in person or called by phone.

Executive Functions
I sometimes have difficulty with executive functions. They include my ability to initiate a task or activity on my own, to plan (for instance, what I will do during the day), to organize tasks and materials, to sequence (arrange items or things to do in order), to prioritize and to shift between activities and conversational subjects.

Memory
In Parkinson's disease, it is usually the retrieval of information that is impaired. I can usually get memories into storage (if I’ve paid attention), but I sometimes have difficulty recalling them. Occasionally, I have difficulty recalling a person’s name or grope for the correct word in conversation. Fortunately, memory has always been my strong suit and continues to serve me well.

Visual-Spatial Abilities
This term refers not to vision per se, but to how the brain interprets a visual image. I sometimes have difficulty judging distances and relationships between objects. In the past, I teased seniors who parked on sidewalks, but now I find myself parking on sidewalks, misjudging where the curb ends and the sidewalk begins.

Yay Me!

OK...1.5 weeks (I started the Monday before my last post) into this "new way of living". I am pretty damn proud of myself.

No Soda - NONE - nada...not even a sip!

I ATE GREEN!!! many times. Baby spinach, celery, green beans (yes I said green beans...) carrots!

I have eaten whole wheat pretty much with every type of carb I've had.

My coffee in the morning...only 2 sugars and skim milk (use to be 6 and heavy cream)

And I eat tons of fruit....bananas, apples, strawberried, mangoes, grapes....

I even made it to the gym once and I've been far more "active".

I feel fan-effing-tastic!

Yay me!

Toodles!

OK...here's the deal

i went to my Dr two weeks ago for my physical. She quite bluntly told me that if I don't lose weight I'll develop diabetes. She basically told me that this is something I can control and with all the other stuff I can't control, this is what I should be focusing on.

So, I know all this. My head knows this...and even my heart so why don't I do it.

Quite frankly, I do not know.

I am searching for the answers and in the meantime, trying to eat better (so far so good) and start moving (not so good here...but working on it).

I am going to try and keep a diary here so I can figure this all out and hopefully accomplish the very realistic goal I have set for myself. Not sharing that yet...but I have told someone, so it's not a secret.

Ideas of why i just don't "just do it".

1. I have an addictive personality and food is my drug of choice.
2. I am hiding from something...but I don't know what
a. new idea on this is that it has something to do with my lack of self esteem growing up. My first memory of "binge eating" is when I was about 11...had to do with 7-11 and lots of candy.
3. I am just lazy and a coward.

Well, there ya go. That's my story at the moment. Comments are welcome. I heard something today that said "Life is a Gift" and "You'd be surprised at how helpful you can be if you just tell the truth". I need the truth.

Fun with Pictures and a Mac