Me and PD #11

      Hello everyone, it's been awhile! I did not realize having a puppy would mean not having enough time to even go to the bathroom. It's been a challenge, but things are getting better. Buddy is starting to develop into a very well behaved and valuable family member even though at six months of age he is the size of a small pony! He has forced me to go on walks which is great exercise for me, and I have found that we both enjoy it. He still has his puppy moments ( think of a fifty pound toddler with fur, four legs and able to jump flat footed over a couch! ) He is starting to mellow a little, and I'm sure will be even more so, when you know what happens when we take him to the vet in a couple of months! I know it would calm me down!!!! Anyway I have enclosed pics and will keep you updated on our progress. Of course his training would go a little faster if Diana would not spoil him so much. She absolutely loves him!

 

      As for my PD, things have not changed a whole lot, unfortunately it's still with me! I keep hoping I will wake up one morning and not feel like jello in a earthquake! Mornings are one of the most difficult times of the day, because I take my meds every three hours during the day, but not when I sleep, so there is a lapse of dopamine in my brain of about eight hours, which control my PD symptoms. Once I take my meds in the morning, it takes anywhere from 45 minutes to an hour for me to start feeling the effects. So first thing in the morning. I'm about an 8.0 on the Richter scale. This makes it very difficult to get ready in the morning for work! In the shower I'm forever chasing my bar of soap as it is constantly flying over the shower curtain. My hair gets extra clean, as I find once I start shampooing I cannot stop! I do have an electric toothbrush, because if I use a regular one, I find I am not only brushing my teeth, but the inside of my nose, my ear, my eyebrows and everything else attached to my head. As far as shaving, I only do that when my meds are working at their peak, otherwise I would probably be hairless! My symptoms are a challenge every day, but you learn to adapt. I think I will end this blog now as it's time for my meds and it looks more like I'm trying to play the piano instead of type! Thanks for listening and stay tuned.

Me and PD # 10

    Hello everyone, it's been awhile since I have blogged! There is a good reason for that and hopefully I can figure out how to upload some pictures to give you an idea of why I have been so busy! As most of you know from reading my previous blogs, we now have a puppy named Buddy. We received him on June 27th and my life changed dramatically on that day! It has been full blown puppy mode ever since. He has been a lot of work, but worth every bit of it. He is a Greater Swiss Mountain Dog and when we got him he weighed about 14 lbs., now he's around twenty and he's only thirteen weeks old. His dad weighed 155 lbs. They were originally bred in Switzerland for farm work, such as pulling carts and wagons. They are also used for mountain rescue. He is one of the sweetest dogs I have ever met and is already a mamma's boy. At first he required constant attention, but now is pretty much housebroken and is sleeping at my feet as I write this blog. He will be a good friend and loyal family member for years to come! He has forced me to exercise as we go on at least a couple of walks every day, which is good for my Parkinson's! There is one thing that I don't understand though, how can this dog poop so much!? Instead of a pooper scooper, I have to take a snow shovel and a 55 gal. trash can on our walks!!!
     Speaking of my Parkinson's, it has been a little problematic lately and my neurologist and I are playing with my meds, to try and get it a little more under control. I've been experiencing a little dyskinesia with my left arm and my head, (dyskinesia are involuntary muscle movements). This can be caused by taking too much of my medicine sinemet. I've also had a lot of anxiety lately, which is also a common symptom of PD. I seem to get overwhelmed easily, and don't like crowds. I also am more fatigued than normal. I'm sure a lot of this is because of the change in our daily routine due to Buddy and will work itself out as we all adjust to our new lives. I hope my PD allows me to train Buddy to be a therapy dog, as I would like him and I to maybe work with children. He absolutely loves kids.

      I hope to write more often as Buddy settles in to his new home and grows out of puppy hood, so thanks for listening and stay tuned!

Me and PD #9

     I'm back again with an update on my PD progress, and my life in general, which lately has been extremely hectic, and I will get more into that in a minute. As far as my disease, I've been doing pretty well, I've noticed my meds wearing off faster, so sometimes I take them a little sooner, especially at work as I get tired faster, which just exacerbates my symptoms. People can't tell sometimes that my symptoms are heightened because I have a lot of internal tremors, which is a feeling of increased anxiety. My insides sometimes feel like some people feel when they have to give a speech or perform in public for the first time. This is not pleasant! I did go to my family doctor for an annual check up, blood tests, urine sample, (at least they didn't ask for a stool sample), turn your head and cough, and of course the dreaded prostate exam!!! I mean COME ON, they can send men to the moon and back, but they can't figure out a better way to do this? I mean how degrading, I always feel like I been violated!! I need therapy after this! Anyway, I pretty much passed with flying colors, blood sugar was good, no diabetes, blood pressure was 120/80, and my cholesterol's dropped twenty points, and the biggest surprise, (drum roll please) I have lost eight pounds!! I feel as light as a feather! I'm not quite sure how I did it, I mean I did cut out bread and pasta, and I'm eating more lean protein and way more fruits and vegetables. I mean WAY more! I think I had ten pounds of strawberries for dessert the other night! I also did this in spite of the fact we had our family reunion since my last blog. Now for any of you that have not experienced one of our family reunions, let's just say there is enough food there to make every one in the world fat, and most of it is food your doctor tells you to try and avoid.
      Now to the part of why my life is more hectic lately. Our puppy Buddy is here! You can see his picture on my last blog! He flew in Monday June 27th from Pittsburgh with no problems. He is adjusting really well with the help of lot's of love from not only us but everyone that meets him, he is very cute and will be a great dog and friend! We are slowly trying to train him and he requires a lot of attention right now. He is pretty well crate trained already and it's only been about a week. Potty training is going a little more slowly, but he will be OK in time, BUT TALK ABOUT STOOL SAMPLES! In a week, I think I have about a dumpster full, oh well, that's the price you pay for love in your life! 
Well that's about it for now. Thanks for listening and stay tuned.

Me and PD #8

    Well readers, here is my surprise I promised you! His name is Buddy, and he is a Greater Mountain Swiss Dog, or Swissy. He is five weeks old in this picture, and on June 26th he will fly from Pennsylvania to start his new life with us. They are very big dogs ( notice the feet! ). His dad was a 150 lbs. and mom was 120. They are absolutely one of  the most gentle and loyal dogs you can get. They are used a lot as rescue dogs, but were originally used for farm work in Switzerland. Buddy and I are going to try and train him to be a therapy dog, hopefully to visit sick children in hospitals. Not only will he be good therapy for them, but hopefully for me too. He will force me to be more active and get my butt out of the house and go for walks. I can't wait to see the looks on my neighbors faces when they see me walking a dog the size of a pony! I know it will be a lot of work at first, but we are dog lovers, and we decided one more time, this will be our last dog! I'll keep you updated on his growth and training. We have been to the pet store, and have purchased a crate for him, that with the divider allowing for growth taken out, I can sleep in! We look forward to Buddy being a loved and loving member of our family!

     As far as my PD since I last blogged, it remains about the same. I have tried to be more diligent about taking my meds at exactly the same time every day, and have noticed a slight improvement in my symptoms. Also I have started a new diet to lose weight, this is killing me! Did you know you are supposed to eat food according to proportions instead of trying to eat everything in sight? What a new concept for me! My goal is 50 lbs. and I will keep you posted on my progress, right now I'm at 250. I will try to blog weekly, but may be too weak from dieting to type! So there's a lot going on in my life right now, I hope I survive. Thanks for listening and stay tuned!



Me and PD #7

     Well, here I am again telling you my woes of having Parkinson's Disease! Actually this disease has made me realize just how fragile and complex the human body is! It's hard to imagine, that missing a few cells in the brain can lead to uncontrollable muscle movements,
rigidity,depression,lack of facial expression, loss of balance, smaller handwriting and numerous other symptoms. This is such a complex disease that no two people have the exact same symptoms and there are about 1.2 million people in the U.S. alone that have PD! Plus from the onset of this disease until diagnosis, could be anywhere from 2 to 10 years! I was diagnosed a little over 2 years ago, but probably had it about 6 or 7 years ago. People always told me the bad habits I had when I was younger would destroy my brain cells, but I never listened. What's next hairy palms? Oh well, life is a challenge and you work with what you got, sometimes it's just a little harder. I still consider myself fortunate to have what I have in life and always will. I still have a surprise for my readers this month, and will probably divulge my secret in my next blog. Until then stay tuned and thanks for listening.

Me and PD #6

     Hello again. I believe the last time I blogged I was going to try a new way of taking my PD meds. I was going to crush them and dilute them with orange juice or Tang. I'm here to tell ya people, that did not work. I believe I tried it for three days and I had such bad dyskinesia (uncontrollable body movements) that I probably looked like an Albatross trying to get off the ground. Oh well you have to try! I went back to my normal schedule and so far it hasn't been too bad. It's so hard when you have to take them six times a day without food for a half hour before and after. I find it nearly impossible. I am on a mission to lose weight though! I would like to lose fifty pounds. I'm sure I would probably feel better if I live through it! If anybody has any suggestions on how I can accomplish this without becoming a bulimic or starving myself or working out until I hurl, please feel free to let me know. I know it's probably not realistic, but one can hope! I hear there is a procedure that helps you lose weight, where they put staples in your stomach. I think it would work better for me if they put them through my lips. I am that weak! Anyway, things are going pretty well and I hope they are the same for all of you. I have a surprise for you in the month of June, so thanks for listening and stay tuned.

Me and PD #5

     Hello again friends. I went to my movement disorder specialist yesterday because my meds did not seem to be doing what I pay them to do! I've been having a lot of rigidity and soreness lately, plus some fatigue. Kind of like the hangovers I used to have back in the day! I love the neurological staff at the University of Nebraska Medical Center. They are always pleasant and are genuinely sincere in helping you deal with the effects of your gift of Parkinson's Disease. Plus they are on the cutting edge of Parkinson's research which is a plus. After completing my usual PD tests not unlike those of a sobriety test (balance, hand eye coordination, etc.). I was deemed to have the same score I did at my last appointment, which means basically my PD has not really progressed, but my meds need to be adjusted. The very first time I saw my doctor, he asked me what I wanted to accomplish, and I told him I wanted to be as normal as possible with as little medication as possible. So far he has held me to that. What he suggested is, instead of taking my pills with water, I crush them and mix them with orange juice or Tang. I didn't even know they still made Tang. But by God if it's good enough for the astronauts, it's good enough for me! This  of course will be a trial and error method. It's kind of like fine tuning a car, if you don't have it just right, it could run a little rough. So those of you that know me if in the next couple of weeks you see me and it appears I am break dancing, you know I still have some fine tuning to do. Maybe I should just wear headphones, so it looks like I'm dancing to music. Oh well life is a new experience every day! Thanks for listening and stay tuned!

Me and PD #4

     When you have Parkinson's disease, I think it's normal to look back on your life, and wonder was their a specific thing at a specific time you did to get this disease. Was it because when I was young, I lived in an older farmhouse and grew up drinking well water? Did pesticides from the fields of corn get into the water? Or was it from being on an old ship in the navy and being exposed to all kinds of toxins and environmental hazards? Was it when I worked as a home inspector on the east coast and again was exposed to a lot of environmental hazards such as asbestos. Was it from experimenting with things I should not have been when I was younger? (Of course this is totally hypothetical!) Was it from receiving a few concussions throughout my life? Did I get it from chewing on a piece of grass or weed from a farm field that was just sprayed and didn't know? Or is it just plain hereditary? I guess I'll never know, but I think about it!
     PD is such a unique disease, it does not affect everyone the same. Not everyone that has PD has the exact same symptoms, and they vary in intensity. PD also progresses at a different rate in each patient. All of this makes it very difficult to treat! There is a constant adjusting of medications as you progress. I am very lucky to have the University of Nebraska Medical Center so close. My doctor which is a movement disorder specialist is involved in research for PD at UNMC, which is on the cutting edge of PD research. I have been involved in one of the research projects and will gladly participate in any they ask me too. Anything I can do, I will!
     I had a doctor's appointment scheduled for July 25th, but had to move it up because my meds are not working as well as they were, so now it is scheduled for the first part of May. At which time I will give an update. Thanks for listening and stay tuned.

Me and PD #3

     This week was kind of rough, it seems my meds weren't working like they should. I had a lot of rigidity at work and I been really sore! These are called wearing off spells, or "off times" when the meds are not working as well. "On times" are when they are. There could be a lot of reasons for this. After about five years or so anti-Parkinson meds cease to work as well and you need to up the dose or shorten the periods between doses. I doubt this is the case as I have only been taking them for a couple of years I think my problem is I have to take them six times a day, either 1/2 hour before a meal, or 1/2 hour after a meal for them to work effectively! Are you kidding me? For you people that know me very well this is damn near impossible because of my love of food. If I'm hungry, I'm not going to let a little pill stop me. Plus you are supposed to take them religiously at the same time every day. There are only a couple of things I do at the same time every day, but we won't get into that! I guess I really need to be more regimented in order to keep the beast away!
      Exercise is very important for people with Parkinson's. Some of the best exercises are yoga, tai chi, dance classes and just plain old walking. I am presently taking a boxing class at a boxing gym in Omaha called Mick Doyles. Mick has been involved in boxing his whole life and has been trained to teach PD patients. The reason boxing is so good is because it forces your brain and body to work together. PEOPLE, I have not had a workout like this in a very long time. Mick does not cut you any slack because you have a disease. He believes in building your endurance, even if it makes you hurl! Or you end up in a corner in the fetal position! I really am glad I go and it does help, but it's kind of a love hate relationship.
     I guess that's all for today. Thanks for listening and stay tuned.

Me and PD #2

     For all of you that have given me positive feedback about this blog, I thank you! It's nice to know that people are interested in learning about my gift. Today was a hard day. I went to work and it takes awhile for my meds to kick in. I wake up at 5:00 and right away take my meds but I'm at work by 6:30 and my tremor is still pretty well doing it's thing, but calms down after awhile. I only work part time (3 days a week), do to fatigue. I work at JC Penney in sales support, so I work in a lot of different areas, doing a lot of different things. Every day is different which is what I like. I love the people I work with. I been there going on about five years and have made a lot of close friends and they have been very supportive of my condition! Judy my immediate supervisor, cuts me no slack, and challenges me to do things that are not easy, but yet are good for me mentally as well as physically. I'm going to work as long as I can, because it's good for me and besides what else would I do?
      Anxiety can be a symptom of PD, and is one of mine, I find I don't like crowds, or a lot of noise and activity. When I get nervous or anxious my tremor is really more pronounced. So going to Wal-Mart on a Saturday afternoon will turn me into a blur. I'm glad I went to a lot of concerts when I was younger, (some of them I even remember,) because I couldn't handle one now! 
     Did you know Nebraska has the highest rate of Parkinson's disease per capita in the world? No one has completely figured out why, but they think it has to do with pesticides, maybe getting in the ground water. This is just a theory, no one knows for sure. There are many things that they believe causes PD, but I'll get into that later. I won't blog every day, but I'll try to do a couple a week. I'll talk about the future, the present, and for you people that can handle it, I'll even visit the past here and there. That should be a wild ride! I'll talk about my days with PD good and bad. I'll get into what is going on as far as research, different medications and how they work, and the various resources for people with PD and their caregivers and family members or just friends of people with PD. That's all for today. Thanks for listening and stay tuned.

Me and PD

    Today is my first blog,and I really don't know what I'm doing,but my hope is I can figure it out. I was diagnosed with Parkinson's disease in Feb. of 09. Prior to that about three years earlier, I was diagnosed with what they call essential tremor, a common misdiagnosis for PD. When I first heard my diagnosis, I was numb, how could have this be happening to me? I was only 57 and I thought I was superman. I looked at my long time girlfriend Diana, and asked what do I do now? She looked at me and said WE deal with it! Diana and I got back together about 12 years ago, after being high school sweethearts and then leading separate lives for many years. She is my angel and my best friend! More on that later. My current symptoms of this disease is a tremor in my left hand. rigidity, soreness pretty much all over, and fatigue. Of course there are other symptoms that concern bodily functions that I don't care to discuss publicly. Of course I should fill you in on what Parkinson's disease is! It is a chronic and progressive movement disorder that involves the malfunction and death of vital nerve cells in the brain, called neurons. Some of these dying neurons produce dopamine, a chemical that sends messages to the brain that controls movement and coordination. As PD progresses, the amount of dopamine decreases, leaving a person unable to control movement normally. I take a medication called sinamet 6 times a day, that is like artificial dopamine that helps control my symptoms to a certain degree. I hope to continue blogging on a regular basis, so you can follow my progress with PD, and help me make more people aware of this disease and the different ways you can help in the race to find a cure. That's all for today and thanks for reading.