Keep It Simple - A Little Means A Lot

Before I had Parkinson’s, besides vitamins I had two pills a day to take. It was easy, never worried about what bottle I picked up. Now, I have a drug store in my home and I was spending a lot of time looking for the right med I needed at that time. My husband came up with the best idea. He took a permanent black marker and wrote on all the lids, not the drug name but what it was for. Instead of Lodosyn he wrote “Nausea” he wrote what the drug was for making my life with Parkinson’s easier, especially when I needed something quickly. When the doctors I see saw how they were marked they all thought that was the best idea they had seen. Thank you very much hubby !!!!! These past two years have been unbelievable for me and my family. While we live in Wisconsin (love those cows) I still see doctors in Dallas. I have lost count how many trips we have made but I want to thank my son for letting us live with him months at a time. He and my husband took very good care of me. They even got his beautiful girlfriend to spend a Saturday evening babysitting me so the “guys” could go out. She is so kind and gracious, she brought dinner, movies to watch and the best chocolate cupcakes. It was a wonderful evening and I will never forget her kindness. During that time my BFF (Best Friend Forever) didn’t know what she could do for me, so she asked what I would like and I said “your oatmeal raisin cookies” In less then 24 hours, those cookies were delivered to the door. Hubby opened the box and pulled out this big bag of homemade cookies. All the way from New Jersey to Dallas, in less then 24 hours this woman is amazing. It was later that I found out she baked them immediately, boxed them up and took them to UPS and said they HAD to be there tomorrow. The cost to her just to ship $80.00 !!!! Yes you read that correctly, this dear friend gave me a special gift, I will never forget. Everyone loved her cookies - I got one, it is by far the best $80 cookie I ever had. I want to say thank you to each of you for caring and loving me, making bad times fun and for loving me enough to spend $80 to ship my favorite cookie to me. You guys are the best.

Can Parkinson's be funny?

Well, I would have to say yes and no. It depends on a lot of different things at the time such as people you are with, how your feeling that day etc.
I have a brother-in-law and he is a very kind soul with a great sense of humor (which I dearly love) Shortly after I was diagnosed Tim came through the door and said "what's for dinner Shake & Bake?" That same evening (Tim had a knee replacement) he started tapping out a beat on his knee and I let my tremor on my right had go on the table before you knew it we were making music, we all were cracking up.
If if ever get the chance read the book "What's Shakin'" I laughed so hard I had to walk away from the book because I could not see through the tears.
About two years ago I saw my first hallucination. It was a male Mallard, sitting on top of the TV, flapping his wings and talking to me. Now I don't speak mallard so I could not tell you what he was saying, but he would not stop. I tried to make him go away but he wouldn't so I went to bed and I have never seen him since. I often wonder where he is?
So at the end of the day with or without Parkinson's you have to laugh because you can only imagine what's next

Attention to Detail

One thing I have noticed since having Parkinson's is the lack to multi task or that I am so focused on something I can't move on till it is done. I need every little detail about everything that is happening, when it is happening, I want answers !!!!!!!!
That is good when I am helping a WWII vet or researching for a new doctor for someone but for my husband it is pure crazy.
I love to decorate and landscape but when I drive by certain houses in my neighborhood, I want to get out of the car and beg them to let me fix it. It currently looks horrible, it does nothing to enhance the house, they would of been better off doing nothing.
So I ask, if this looks so bad to me, should I offer to fix it or ignore it?

I Have Gotten Bold Since Parkinson's

Sometimes my husband just walks away or pulls me out of a store. I don't know if it is old age or Parkinson's but I am told I have done some bold things. Has any other Caregiver noticed this about those of us with Parkinson's?

Let me share with you an example over the past five years. I was in a Barnes & Noble bookstore sitting on a stool and looking at WWII books. For 20 minutes I listened to these two old flannel shirt, bib overalls 80 year old men discuss politics. I am not sure where they get their information or if aliens filled their heads when they were beamed up but I couldn't take it anymore. I got up walked around the bookshelf and asked these men where they get their information from? They looked at each other and looked at me as if I had a third eye and said, "oh here and there" I then told them I could care less about their political party but if the best they could tell me was "here and there"
I suggested they buy a few books (Left & Right) listen to both side and at least know something about what they are talking about, or they should stay home and not vote. Because without the correct information to make an informed decision, they have no business in the voting booth.

Until then, I had no idea how fast Doug could walk dragging me behind him. When we got out to the car, he asked "Debbie what's the matter with you?" I thought about it for a minute and said, " I don't know but let me go ask those two old guys, they seem to have all the answers."

What's New

I have been reading some medical opinions over the past few months about Parkinson's and Vitamin D. All these articles talk about low Vitamin D levels for Ms, Parkinson's and other neurological conditions. As luck would have it one year before I was told I have Parkinson's, my D level was a step above nothing.
There is an interesting story I heard about the doctor who was hired as a new Chicago Blackhawk team physician in 2008. After reviewing each members medical history, their workouts, and their vitamin intakes, the only thing he changed was to give them each 50,000 IU per day of Vitamin D.

The following year, the team reached the playoffs. In the 2010 season, they won the Stanley Cup.

I have been taking 5,000 IU per day but was told today by my doctor to increase to 10,000 IU.

Looking back on my physical condition prior to being diagnosed with PD, I had a discussion with another PD patient about early precursors, or warning signs, of PD. These signs might tip us off early about PD. I feel this discussion with the other PD patient could turn out to be very interesting.

Don't Yell........

Have you ever taken the time to talk to God? I don't mean in silence, I mean really talk out loud (when no one is home).
I have had times in life when I have felt God had just taken one too many shots at me and I get pissed off. So I go to my favorite place in our dining room and sit in the chair facing out to see the garden. I can see the beauty He created, the animals and birds but then reality smacks back and I begin my out-loud conversation with God.
It used to start, "God this is Debbie" now it is "HEY GOD I AM PISSED OFF AND YOU NEED TO LISTEN." Then I wait for lightening to hit and it never has.
It has nothing to do with a lack of respect or what I feel but we all know sometimes family and friends go too far and I consider God part of my family.

I have never gotten mad at Him for giving me Parkinson's, or being hit by the drunk driver but I have gotten mad at Him when I wanted Roller Blades a few years back and Doug, my Doctor and God all said "no", I just wanted to have some fun. Well, how did that work out? Not too good. I found out God has a sense of humor and a neighborhood child gave me his Razor scooter to ride. I missed the jump and went flying through the air (no plane). The men peeled me off the street and took me to the hospital. You should have heard the doctor, "She did what?? How old is she????" (I am not sure what age has to do with exercise) but this time God was talking to me when I got home -well it was more like laughing.

As I sat for weeks recovering from my flying gig, I had another talk with God and struck a deal. "OK, I won't yell at you if you at least let me have some fun."

My fun came in the form of a Theracycle.

Well, I need to go and see if God wants cream with his coffee.

It's Free

Have you noticed that each of us got Parkinson's for Free but yet
it is a very costly disease. Cost for doctors, drugs, cost us our
jobs, cost us family and friends and cost us the ability to do some things
we like.
I don't mind paying for items I choose to buy but I did not buy Parkinson's.
It wasn't even on sale !!!! There are no designer Parkinson's Diseases nor
any Parkinson's Collectables. I don't know of one store that carries
Parkinson's because if there was it would be empty.

It is our disease, we own it and we get to decide who we tell and when.
We get to decide where we go for treatment and what that treatment
will be. So I guess there is an advantage for getting something for
free.

Is Free good? Yes, when it comes to cookies or something we really wanted. But if I were ask if I wanted Parkinson's for free, I would have said "no thank you." I for one would much rather buy a cold or the flu.

My advise, next time someone is giving something away free, pass on it.

Is It Easy to Meet People?

We have Parkinson's, so what else is new? I do not mean to be flip or uncaring but over the last few months I have had the pleasure of meeting some wonderful people. If I had not had Parkinson's, I would of never had the best Easter Dinner and conversation I have had in a very long time. I would of never met a former Marine and his wife who are so giving and loving towards their family. I would of never met a gentleman who has so much living to do and I would of never met a former corporate attorney and his beautiful wife who happens to make the best cookies.
We are a small group all with very different outlooks on our disease. But those that are so important in our lives are our Caregivers. They are the glue that hold us together. I never realized how much they give, how much they sacrifice and what our disease has done to them. This is not how they saw their lives play out. None of them signed up for this but each Caregiver I have met or spoken with are amazing, gifted and loving people.
They should be honored for the sacrifices they make. So, I want everyone to know if you are a Caregiver in our small group, I am thankful and grateful to you for the love you show us and how well you take care of us. Yes, we have Parkinson's but more then that we have you.

It's your life, You're fired Doc

Over the past few months, I have had the great opportunity to meet other Parkinson's patients.Also this past year I have met some great WWII veterans who need help with VA benefits - that's right WWII veterans.

People have come to me asking for help finding doctors for a family member, themselves or a friend. I have also been asked why I have such good doctors, how I get the care I do and how I find these doctors.

My story didn't begin 5 years ago with Parkinson's it began when I was 27 and was told I had Bladder Cancer. That is when I fired my first doctor - yes you read that right, I fired the doctor right in the OR in front of everyone. It was as if I fired the shot heard around the world. The doctor said to me "you can't fire me" and I replied, " oh yeah, listen up - hey you, you're fired, so get out." He stood there and once again I said "you're fired so get out." With that he finally did, the OR was still no one moved or said a word until I said can I go back to my room and two nurses came over to me and said no one has ever talked to him like that and I responded, "that's the problem."

That was my realization that just because they have "DR or MD" with their name doesn't mean a thing, somebody had to graduate at the bottom of their class. A lot of doctors should work in labs or kennels not with humans, some have the complex known as the "god complex" others have the nerve to say to the patient " I'm the doctor, I know what is best for you." To which I reply "REALLY?" So you have Cancer/Parkinson's etc also? Until you walk in my shoes or at least try them on, you don't know what it is like.

Others will become very pissed off if you begin to question them or asked about other meds you could try. They do not like the fact, if you dare to educate yourself and become more knowledgeable then them in a certain area. How dare you question me, I went to medical school, I suffered through residency , blah, blah, blah. Well, my response is and yours should be "get over yourself, because I am. If I cannot receive the care I believe I should and you are too busy to answer my questions and spend time with me - Your're Fired.

YOU are the patient and your life has value, you deserve to be treated with the same respect the doctor does if not more because you ARE the one with the medical issue. If you are not getting that, it is a red flag to fire the doctor and find a doctor who will care for you in the way you and you family deserve.

Trust me when you tell a doctor they are fired, they will not take it well. But once you do it, you will feel better, have gained back control of your life and medical decisions and are free to find a 5 star, top 10, opened and knowledgeable doctor who will learn from you and you from them.