Saturday, November 7, 2009

Alone...

I have been struggling with an emotion that I have had problems dealing with. That is this overwhelming feeling of being alone in my struggle. Yes, I have a wonderful wife, a son who loves me, grandsons, a best friend that defines what a best friend should be, a Pastor that cares for me, a church family that others could only dream of, and co-workers that are concerned and caring. So, you say, why do I feel alone? Because I do not know anyone who is or has gone through what I am going through! I am, as I like to say, plowing new ground! And frankly, I don't like it. My doctor can't tell me exactly what I have or what to expect. The health care nurse that I talk to on a regular basis say that is normal for people with my conditions. That's OK for her to say, but I am a Navy Gunner's Mate. I have spend the last 40 years dealing in absolutes! Now, I have to work with vague ideas and an attitude of "Wait and See". It's damned frustrating, I don't mind telling you. Sometimes it makes me very angry. Other times I am very depressed about this problem. Both emotions are useless, because I can't commiserate with anyone about them. How I wish, there was a support group or even one person, that I could talk to about what is going on with me and what the future holds. Amazing as it may seem, I cannot find one site on the Internet that addresses Parkinson's with dementia. There are a few Lewy Body Dementia sites, but they are vague or out of date. Am I the only person in the world going through these diseases? I guess I really hope so, but I know better. So, my frustration and rage continue. Maybe someday, I will get to talk to someone and compare notes. Until then, I am alone...

Wednesday, September 16, 2009

Life's Changes

My wife and I have been busy the last 10 days starting the next phase of our lives together. Others who know me or see me on a daily basis don't really notice the slow downward slide that I am in, but my wife of 36+ years does. She knows that I get much more tired, with little or no real exertion. She down plays it, but she sees it just the same. She notices my mental confusion, my inability to make decisions, and just how slow I move. Most of all, she understands, but also quietly observes my anger, rage, and frustration at life as it is. The folks that work with me, see me at my best, after a long night's sleep, a full stomach, and with a full dose of meds in me. They think all is well, and I am glad for that. But in the evening, when I have problems talking, or when I choke on a raw carrot because I aspirate, she knows.
So, we have begun our transformation into a simpler life style. We have both submitted our retirement papers. Hers for this December, and mine for a Civil Service Disability retirement, which has to be approved by OPM. Last week, We sold her beloved VW Beetle, "Sonshine". We also traded our Toyota Van, which I truly liked, for a new Subaru Forester. Why, because it is easier for my wife to drive, and more and more, the driving duties will fall to her. And finally, we are placing our home on the market to facilitate moving into an "over 55" apartment. Why, because the burden of keeping a house up, mowing the lawn, fixing the most simple mechanical or electric item in the house has become overwhelming to me. Physically, it totally exhausts me to mow the lawn. Normally, i do the front yard one day and the back the next. Now we don't have a big yard. But I completely soak everything I am wearing in sweat doing the yard, and it takes two hours for me to recover. I am not complaining, it is just a fact of life.
Another reason we are making the move to simplify our lives it a quality of life issue. We want to still have fun! We want to spend our energies traveling, visiting family and friends, and doing things that interest us, when we want to do them. "Things" can weigh you down. Right now, we want freedom.
Again, don't worry, I actually feel better having these issues removed from our plate. For instance; I waxed the new car last weekend. OK, I used a new polymer product that is easy on, easy off. And I used my electric buffer to buff the "Wax". But the point is, when I had two cars to care for, I was overwhelmed by the task of cleaning two car, so I did not do any. Sound stupid? Maybe to you, ,but to me it was the way it was. So no, I feel that I can accomplish my goal, and I feel motivated to accomplish it. It did take me two days to do the car, but it does look good.
The real point is, my wife and I have to learn how to best live, within the limitations of Parkinson's and Dementia, as these diseases progress. Yes, I suppose I could expend energy fighting to do the things I did before. But all I will do is end up tired and frustrated. I choose to expend my energy on the things I enjoy and not he things that cause me issues. Again, I don't think I am being selfish, just realistic. And my wife agrees.

Thursday, September 3, 2009

Doctor's Feelings.

Today, I had my usual 4 month meeting with my Neurologist. She is an exceptional doctor and has taken great care of me. She always spends a great deal of time explaining things to me and answering my questions. She has been courteous and caring, at least until today. Now I will admit that anyone can have an off day, be a little down, bothered by what someone else said, or just grumpy. But, today my Neurologist just wasn't herself. Since I have become ultra-sensative in recent months, I assume it is something I did. Yes, I know what the word ASSUME is an acronym for. But, just the same, did I do something wrong?

I will admit, I spend a lot of time reading WEB info on my medical problems. I believe I should be proactive about my medical condition, not passive. So, I read WEBMD, and a web site called Patients Like Me, and anything I can get my hands on including books and articles. I read about the drugs, new and old, tests in development, everything. And, when I go to see my Neurologist, I ask HER the questions about what I have learned. Why do I ask, because SHE is my Doctor. The one with the Real Degree who is taking care of me. Now, I do everything she tells me to do, and nothing the web articles tell me to do, unless she recommends it.

Another asset I have, at least until today I thought it was an asset, is a telephone nurse who is from my insurance company. She calls me, or I call her, on a regular basis, to discuss my progress, my meds, and what I am going to discuss with the doctor. This telephone nurse does not talk to my doctor, only to me. In any case, this telephone nurse recommended I ask the doctor if I might have Lewy Body Dementia as a particular type of dementia. So, being the fool that I am, I wrote that question on my usual list of complaints, observations, and symptoms. When my Neurologist read that on my list her attitude immediately changed. She became curt, short, and almost angry with me. I can only deduce that she does not like second opinions or someone second guessing her.

I have learned something today, I will never ask another question, recommended by another medical person again. Maybe I will just take my pills and be quiet.

Friday, August 21, 2009

Summer's over.

Well, all the events of the summer of 2009 are complete! Now maybe, I can get my routine back and start to feel better. Ever since I developed Dementia, routine is very important to me. I have noticed increased speech problems and further degradation in my memory. For instance, I have had great difficulty remembering what day it was, our home address, and close friends names. On the bright side, during a trip down memory lane in Cleveland, I was able to remember names of people from early in my childhood!

My wife and I just returned from our annual visit to Cleveland to visit my sister and brother. It was a good trip and a good visit. Except, my rambunctious miniature poodle barked too much and got my sister's neighbor angry. Oh well, they are difficult people anyway. After the trip to Cleveland, we went to Winona Lake, Indiana to look at a retirement community established by the Grace Brethren Church. Since I love the Grace Brethren Church, I thought this would be a good place to retire. I was not disappointed. The facility they have built is spectacular. The town homes are luxurious to say the least. Pricing is fair, and the nursing home and assisted living facilities are good as well. We even ate there and the food was very good. The single problem is the location. Medical facilities are 40+ miles away. In a snowy climate, that is a show stopper. Just the same, it is high on the list of considerations for the future.

Prior to that, our son and his family visited for almost three weeks! My daughter in law needed some surgery and trusted a surgeon she worked with here, in the past. The surgery went much better than expected and I am grateful for that. Since I am so dependent on routine, this visit was difficult for me. Don't get me wrong. I really enjoyed their company. But joy had a price to pay. Just the same, they were understanding and helpful and I appreciate that.

Earlier in the summer, we took the "Dead Relatives" tour. But I already wrote about that.

One nice thing about my trip to Cleveland, I was able to tour my old neighborhood, visit places I used to hang out at, and even talk to some old friends. The walk down memory lane was enjoyable, and I wish I had more time to explore my old memories. Maybe another day.

Friday, July 17, 2009

Stem Cell Research

Sorry I have not had a post in a while. Summer is always a busy time. We just has a fantastic visit with my Sister's youngest son and his wife and children. It was wonderful! We went to the water park and had fun. I really enjoy young children at a water park. I had fun playing with them and watching them play. We went to a motor park where they could actually drive go-carts that were age specific. Again, true joy, for me and the children. Not to mention my Nephew and his wife driving age specific cars for them too! Then, I got to fulfill a little 9 year old boy's request. He wanted to see an aircraft carrier. So, using my Navy connections, I took all of us on a tour of the USS Truman. It was the best part of the visit. Not because I was back on a Navy ship, but because that little boy's eyes were so big. All he could say was, "I did not know they were this big!" I am really proud of my Nephew and his wife. They are raising wonderful children and they are very much in love. Their visit gave me energy, fun, and life.

There are more summer things to do yet. For instance, My wife and I are going to Omaha to do some grave site research. My wife is into genealogy. This is a trip she has wanted to do for a while, and she wants to take this trip while I still can. I agree. After that, we will make our annual trek to see my Son, Daughter-in-law and grandsons in upstate New York, go to Cleveland and see my Sister, and then go tour Grace Village in Winona Lake, Indiana, to see if that is where we want to retire. A full summer for someone who does not have Parkinson's and Dementia. For me it will be a challenge!

So, now you are up to date, and I can address my topic. I have a new business acquaintance, that is becoming a friend. He is a well off entrepreneur, who has many friends like him. One friend is in hospital management and research. This medical friend is working with a hospital in the Ukraine that is doing extensive Stem Cell research. My new friend knows of my medical issues, and offered to connect me to his medical friend to get me the treatment, in the Ukraine, for my Parkinson's and Dementia. At first blush, most people would probably be interested. A chance to get well, back to normal, a chance to extend my life and ensure a good quality of life. But my view is different. You see, I believe that abortion is KILLING a human being! In my view, it is murder! And I believe it is against God's plan. So, how can I allow myself to benefit from something I am against. Obviously, I cannot, and will not. But I also have another view. Ever since sin entered the world through Adam's sin, death has reigned. We all die, and will continue to die, under God's control, until Jesus returns. So, I am not in control of my life, its' length, or circumstances. Yes, I have two neurological diseases that are degenerative and will continue to get worse until I die. That apparently is God's plan for me, and I fully accept that. As a matter of fact, I welcome it! I don't want to live forever. Remember what the Apostle Paul said, "To live is Christ and to die is gain." Heaven is better than this life, for a Christian.

Finally, I have seen the direction of our country and this world, and I am not all that interested in living in it any longer than I have too. No, I am not suicidal. But I have had a great life, been blessed with great friends and family. Done things others never dreamed of. My life has been exciting and adventurous. But I do not LOVE life. Life is something I have to go through to get to heaven. God gave me this life, and I cannot take it, only HE can. And while I live, I will live for HIM. But I will do nothing to artificially extend my life, even if I could. And I will not go against my Christian values to benefit myself. That's just me.

Thursday, June 25, 2009

Friends, from all over

The folks at the pharmacy that I use are very nice and very caring. There is one Pharmacist's Assistant that always looks after me and asks me or my wife how I am doing. The other day, I went in to pickup some meds and she told me that I was their miracle patient. I asked why. She told me that most people on the meds that I am on just roll up in a ball and give up. But that I was still going strong. I told her that I did not have any quit in me.

I know I worried some of you with my "Depression" post, but I must be honest and depression is a real issue for me. I really want you to know what is going on, and I am interested in feed back from others suffering with Parkinson's and Dementia and their care takers. From what I read on other sites, I am not alone. It is GOD, my wife, Family, Friends, Church Family, work mates, and my little poodle "Marcel" that keeps me going. The folks at the pharmacy are special to me, and those kind words helped. If you folks don't give up on me, I won't give up either.

Friday, June 19, 2009

Depression...

I have read many articles on the WEB about Parkinson's and Dementia. Most if not all address depression. But nothing written comes close to how depression effects me. Most of my life I have been happy on the outside. Smiling, joking, involved with organizations, my job, friends, church. I had energy to do yard work wash and wax two cars, and still keep up with my wife, son, and friends. Then I was diagnosed with Parkinson's and Dementia. My view of illness has always been, how do we fix it. When I had a colonoscopy at age 50, and the doctor found a tumor the size of a chickens egg, my reply was, "How do we fix it?" I remember Dr. Keith Berger's look as I was waking up from by drug induced nap. He said," I found a tumor and it is ugly!" Well, what I have now can't be fixed and it is as ugly as that tumor to me.. Yes, we can slow it down, or so the doctors say. I think I disagree with that, based on what is happening with me. Or, if this is slow, I would HATE to see it progress FAST! Now again, I have not given up, although the thought has crossed my mind a time or two. But I am not a quitter, and I don't intend to start now with that bad habit. But just the same, I am depressed. Most folks can't see it from the outside, because my "Happy" face is on in public. A friend at church last Sunday asked me how I was doing, my reply was my normal, "Outstanding!" She replied, Sometimes I think you are just saying that and you really feel bad inside." She was right!

Depression has taken away from me the desire to do things that I used to like, even if I had the energy. Recently, I let the grass grow for two weeks! It looked terrible, but I just did not care. I have plenty of things to do, things that I enjoyed before, but I just don't want to do them. Work is becoming increasingly taxing on my mental energy and difficult. It takes a major expenditure of energy to look happy and well. And the organization I work for is going through a major reorganization. Change is definitely not my friend! One of the ways my Dementia has manifested itself is my inability to learn new material. So, new organization, new computer programs, new accounting programs, new time keeping programs, new, new, new!!! Did I tell you I have great difficulty learning new things. Is anyone listening!!!?

Then there is the inability to cry! That's right, I cannot cry. I wish I could, but for some reason, I cannot let my emotions out. That is a new problem since I was diagnosed. So, my emotions remain bottled up. When I was the Command Master Chief on the USS Caron, everyone used me to vent their problems on, even the Captain. One day he asked me, "Who does the Command Master Chief confide in?" the answer was no one. I was alone. And that is how I feel now. Not all the time, but all the time. I know that does not make sense. MY wife has been exceptional!! She is totally supportive. Tries to understand. Is not judgemental. And in all ways has been a model wife, best friend, and care taker. But I can see the stress on her when all I can talk about is what is going on with my medical problems. I talk about my Parkinson's and Dementia constantly. It is forefront on my mind! It's much like a child who wants something real bad at Christmas. All they can do is talk about that toy, show you pictures in the catalog, call the commercials on the television to your attention, and show you the toy in the store every time you go to the mall from Thanksgiving to Christmas morning!! It becomes pretty monotonous. That is what my wife is suffering through. Again, she is fantastic. But I sympathise with her.

MY best friend, Jerry, is magnificent. He keeps me going. He shares many of the interests I had before I got sick. Jerry has always been there for me. Through thick and thin. He has been more loyal than a brother. Jerry gets me out of the house, doing things, and he understands my trials. I could not make it without him and his wife.

Then there is my Church family. My Pastor and his wife are a great source of spiritual help and love. The entire fellowship is supportive, kind, and loving. So there is no shortage of folks that are ready to help. Yet, the depression will not let me be.

I feel as though I am trapped in a room with no doors or windows. The room is slowly closing in on me from all sides and there is nothing I can do. I feel defeated, helpless, and useless. When I am in public, whether it is work or social, I feel I have to put on a facade of feeling good, being tough, and ready to go the next round. The truth is, I would really like to sit out a few rounds before I get off the stool again. But, I just can't rest right now. Robert Frost wrote a poem that describes my condition;

Stopping By Woods on a Snowy Evening

Whose woods these are I think I know.
His house is in the village though;
He will not see me stopping here
To watch his woods fill up with snow.
My little horse must think it queer
To stop without a farmhouse near
Between the woods and frozen lake
The darkest evening of the year.
He gives his harness bells a shake
To ask if there is some mistake.
The only other sound's the sweep
Of easy wind and downy flake.
The woods are lovely, dark and deep.
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.
© Copyright 2002 CyberSpace Spinner

I still have miles to go before I sleep. But less than when I started this journey.

Depression is relentless, all consuming, dark, isolating. I despise it, but just like Parkinson's and Dementia, there is no cure, just treatment. So, I will just have to fight on. Like I said, there is no quit in me.

Where to live?

One of the big topics between my wife and I is; Where do we retire? This has been the topic of many deep discussions. We have a beautiful one story home, on a small lot, in Virginia Beach, Virginia. Some would say it is ideal. But I see problems. First of all, maintaining the house is becoming overwhelming. It takes all of my energy to mow the front and back yard. Yes that includes trimming, edging, and cleanup. But after that, I am wiped out! I can imagine in the near future it will be a two day job. Then there is the expense of keeping the house up. In the last three years I have put a new roof on, replaced the heating and cooling system, refaced some bathroom cabinets, a new garage door, and some other needed replacements. I can hear you now, "It's all done, what more do you need?" Well, the kitchen needs remodeled, new carpet, paint inside, and the vinyl siding is 20 year old builder's grade. All in all, there is still much to do. and to be honest, I don't want to spend the money. Then there is the everyday maintenance like clogged drains, dripping faucets, and caulking! Then there is the inconvenience of the occasional hurricane! They are an ever present danger for those who live on the east coast. Yes, I love the ocean, but it has it's cost.

So, what do we do? I have decided, yes I can still make decisions, that we should live in a rental unit of some type. This will completely relieve me of any maintenance issues. We have agreed to live in an over 55 complex. I think that will be good. It makes sense to live around people of like interests and abilities. The area has not been as easy a decision. As I said, we really like the Hampton Roads area,. We have been here for 25+ years. Our friends are here. Doctors that we trust are here. Our Church family is here. All of my Navy benefits are here. I enjoy being around the Navy. I like to look at ships. But, other areas are less expensive than the Hampton Roads area. Another idea is to move to a retirement village owned and operated by the Grace Brethren Church in Winona Lake, Indiana. It has many appealing features. But no Navy benefits, and it SNOWS! Yes, they do all the maintenance, including SNOW removal. But the fact that there is SNOW is a major detractor.

My wife and I have looked a a number of over 55 communities in the area and plan to look at a few more in the near future. I know we need to make a decision, and we need to sell the house, even in this down market. Time is wasting and I would like to make this move while I am still able, mentally and physically. So, the search goes on and so does the frustration and uncertainty. I pray that we will find our future home soon.

Wednesday, June 17, 2009

Mentally lost

Last Monday, for the very first time, I was completely unable to do my job. I was at work and needed to get one of my team members on the road. I have processed travel orders thousands of times over the last 15 years. I have become fairly good at manipulating our computer system that stores accounting data, travel reservations, and time computations. But Monday, I completely lost the ability to get accounting data from the computer, to complete a travel request. At first I thought I knew what I was doing. I looked in books, logs, even old files. But try as I might, I could not even figure out what I was looking for. For two hours I looked frantically, not even knowing what I was looking for! Then, the team mate who needed the accounting data to complete his urgent travel request came into my office and asked, "Boss, do you have those numbers yet?" That frustrated me all the more. And I went into the common area to look at some more books as I replied, "It's not as easy as you think!" Now, the others knew I was having a problem. Why, because I have produced that information in 2 minutes many times before. Then, my best friend and truly the brains of my operation, quietly told me, "Its in the computer program." Then, and only then, did I remember where the info was and how to start to find it. Two hours of lost time, frustration, and despair.

Now, I have told you before that I have gotten lost driving, briefly lost the ability to read a few times, and have had other brief moments of confusion. And yes, I loose the ability to speak coherently when I am tired. But this was in the middle of the morning and after a good nights sleep. I was scared and embarrassed. Yes, with my friends coaching, it passed, But I know it will return more often for longer and longer times. But the most difficult thing is this time, for the first time, it negatively impacted my ability to do my job. I have a lot to think and reflect on.

Tuesday, June 16, 2009

I have a cold.

For many of you, and me, until recent medical issues, Having a cold was an annoyance. It was fairly easy to manage. Take some Actefed and Robitussin, maybe an aspirin for fever and body aches, but that was about it. But Parkinson's and Dementia have changed all of that. First of all, I take so many drugs that my pill box has wheels. If I get one any larger, I will have to register it with the Department of Motor Vehicles and pay personal property tax on it. Taking so many different medicines makes taking anything for colds a real challenge. Trying to figure out which drug interacts with what drug, is a real challenge. Last winter, I asked my Neurologist what, if anything, I could take for a cold or the flu. Her answer was very limiting. I can take the new formula Actefed, and Robitussin cough medicine, but that's it! Anything else, go to the Doctor. The new formula Actefed does not work for me, so I am doomed to breath out of my mouth at night. And with no way of controlling the post nasal drip, I choke all night. I have found that hot tea helps with the congestion and so does orange juice. I hate to be a wimp, but my GP is going to see a lot more of me.

Wednesday, June 10, 2009

Walking aids.

Yesterday, while at physical therapy, I had a very good discussion with the individual administering my therapy. It seems he has spent some time and effort in studying the effects of Parkinson's and how physical therapy can help. He explained to me that he just attended a seminar on the effects of PD, on walking. The main speaker, an individual with a PhD, who's name was not revealed, stated that PD patients should be in physical therapy early to help reduce the effects of the rigidity. That PD patients should do exercises daily to help maintain flexibility and posture. And that PD patients should be taught the proper use of canes and walkers BEFORE they need them. The premise being, when a PD patient is in need of the device, they are too crippled to teach the proper use. Of course, to keep the skill, the patient must practice with the cane and walker, every week!

Let me take you back a few years. Remember when you were in school and the doctor decided you needed glasses? Did you wear them when you were out of your parents sight? No!! Why, because they were not cool. Appearance is important to us and our ego. And trust me, at 58, with PD and Dementia, my ego is all I have left. Now I have given in and started to use my cane, and I admit, I appreciate it from time to time. And, my "Sympathy Stick" as one friend calls it, has gotten me head of the line privileges on more than one occasion. But a walker!! No way. Not yet. Not at home, not in public, no!

That being said, I did see a really slick walker when I went to get my cane. It had had brakes, a soft seat, and under the seat was a cooler that would hold a six pack of beer with ice!! Very cool.

Trying to describe what I am feeling.

One of the most frustrating things about having Parkinson's and Dementia is trying to find the words, life experiences, phrases that relate, what is happening to me. Unlike having a tooth ache, reflux, or a broken leg, PD and especially, Dementia are very hard to relate. Mostly, I believe, because there is no common ground, no common experience, that I can describe to you. Therefore, a friend, a relative, a co-worker, cannot say, "Oh yes, I have had that before. I understand."

Well, one of the more frustrating symptoms that I have experienced from the beginning is this feeling of numbness in the front of my head. Just under the scalp, my head feels like someone injected Novocaine. My head feels numb, spacey, unconnected, but only in the front three square inches of my head, just above my brow. Well, today, the best description popped into my head!

Have you ever drank too much beer, bourbon, wine? Not all three at once, or maybe. Just as you start feeling the effects of the alcohol your face, nose, cheeks, begin to tingle and as the effects takes hold, your face begins to feel numb,, in a strange sort of way. At least mine does. When I drank to excess, I always knew when I had too much, because my nose was numb! I had a friend who was a dedicated "Wild Turkey" drinker. He knew he had too much to drink when his nose began to bleed! I never got that far, my nose just got numb.

In any case, much of the time, that is the feeling I get in the frontal portion of my head when my memory gets tangled and I can't remember things. Maybe it means nothing,. But it is a symptom that I deal with and have since the beginning of my memory issues. The neurologist believes that is a lack of activity in my frontal lobe. All I know is, until now, I did not have a way to relate the feeling to someone who has not experienced it. Now I do.

Thursday, June 4, 2009

Physical Therapy

My Neurologist has recently prescribed Physical Therapy for the stiffness and rigidity that I experience in my legs, shoulders and arms. The first appointment, the Therapist did a series of objective tests. I was impressed, because they actually had measurements of my flexibility, my balance, and my ability to reach. Many of the tests had actual measurements that were taken. Others had timing involved. All of these measurements were placed in a computer program and a score was produced. That score said I should use a cane, or some sort of walking assist. I don't feel I need a cane. My doctor's reply is, do you want to wait until you fall and break a hip before you use a cane? OK, she wins.

The following therapy has been stretching, balance exercise, and strengthening exercises. Try standing on a 6 inch thick block of medium soft foam, with your feet together, your arms crossed over your chest, and your eyes closed. For me, that is next to impossible. I fall over, almost every time!

Another balance concern is in the shower. I have a habit of washing my hair with my back to the shower head, then turning around to rinse the shampoo off. I make this turn with my eyes closed. I have a dislike for shampoo in my eyes. That move,, with my eyes closed, make me very unstable, and I have almost fallen a few times. To help with that, my wife and I are changing our morning routine so that I take my shower before she goes to work. Just in case I fall. A small concession to a big issue.

I will let you know if the physical therapy helps after the 4 weeks of treatments. I have reserved judgement, since right now, my legs hurt more than before I started.

Are you a sundowner?

I am only 58 years old. I used to stay up to all hours of the night. My mind would stay sharp and alert with 3-4 hours of sleep a day. Recently, about 18 months into my diagnosis of Dementia, I find myself dead tired by 7:30 or 8:00 PM. I find that I have difficulty forming sentences, and finding words. My thoughts are jumbled, and my speech many times is incoherent. At that time, I do what any smart person would do. I go to bed.

I find that I can easily go to sleep in 15 minutes or less and stay asleep until 8:00 AM unless that terrible invention, the alarm clock wakes me up. While it take about an hour in the morning for my mind to function fully, after that I am mentally relatively good until the next evening.

While this upset me in the beginning, I am starting to enjoy the new pattern. It helps me manage the Dementia and keeps me rested so that I am ready for the next day's activities. It does have an impact of family members who come to visit. But they just have to understand that this is the way my life is right now.

Another sleep issue is dreaming. I first started taking Arecept for my Dementia. It caused me to have vivid, color, 3-dimensional dreams. Not nightmares. More like my life's stories. I told my wife it was like the cable for the television was plugged in my head. My doctor, who is a great care giver, changed my medication to Razadyne. The dreams still occur, all night, but are not as vivid. In addition to the Razadyne, I also take Namenda. While these drugs are advertised to slow the progress of Dementia, I notice the downward slide I am on.

While I am on the topic of the downward slide. Nothing aggravates me more than someone who tells me, "You seem perfectly normal." or, "There's nothing wrong with you." I guess to them if I have Dementia, I should be drooling on my shirt and pissing in my pants. Well, hang around, That's coming!! The truth is, no one but me, and to a certain extent, my wife of 36+ years knows where I was mentally, and where I am now. They do not know the frustration of forgetting how to read, getting lost driving home from work, or not being able to speak you mind. Yes, I know that some of them are just being nice, considerate, caring. Well stop! It does not benefit me and it really make me angry.

I wonder if anyone else has these issues. Let me know.

Do you Aspirate?

Sounds like something high society folks do. Last summer we went to the Hampton's and aspirated! But it's not, it is something those of us with Parkinson's do, and it's not good. To "Aspirate" is to inhale food. Again, not good. I first started to have problems with aspirating a few months back. The first time it happened, I really got a large amount of food down my wind pipe and I could not clear it out. The food reached my lungs and I nearly passed out before I cleared my airway. I was coughing and gasping for breath as the room got dark and I got dizzy.

The articles I have read on WEB MD say that this is from the swallowing muscled becoming weak. All I know is it makes eating difficult and somewhat frightening. I used to just gobble down a meal. I was always the first one done, and if I have not had an incident in a few days, I revert to that way of eating. But, soon I will inhale when food is just beginning to go down my throat and PRESTO, I am turning blue.

Now you can say, that's easy to solve, eat slower, properly chew your food, take smaller bites. True, all good advice. But I have been gobbling down food ever since I was stationed on my first ship, the USS Mullinnix. On my other blog, The Master Chief's Lair, I have explained that we had a mess decks capable of seating 65 or so. With a crew of over 400, and an hour to feed the crew, you can see where eating fast was a benefit. So, I inevitably return to my training and eat fast, chew less, and choke!

I wonder if other are having this problem and if you have any suggestions on have to manage this issue. Please let me know.

Saturday, May 30, 2009

Life...

Life, and how it progresses is an interesting thing. I have seen many changes and many amazing events in my lifetime. Space travel, the microwave oven, personal computers, and cell phones, all technical marvels. Especially since I remember having a party line telephone and I remember when passenger airplanes were propeller driven. But the thing I have seen that disturbs me, very much, is the decline of America!! Our society has completely descended into self-gratification and moral decay.

The America I grew up in was not perfect. There were unwanted children, poverty, crime, illicit sex, and drugs. But not to the level of today, and not marketed by Hollywood. Mom's stayed home and raised children, made dinner, cleaned the home, had gardens. Husbands worked, came home to a relatively well adjusted family, played with the children, and later, played with the wife. Today, everything is throw away. If anything goes wrong, its' gone. Including marriages and kids. People are only interested in their own gratification. The motto of the 60's, "If it feels good, do it." is the mantra of today's society. More is good in every arena, money, houses, cars, sex, drugs, booze, college degrees, and possessions. But all of this means nothing and can be thrown away if it fails to meet the irrational expectations of the individual.

Why has America fallen on its' own sword of success? Because it was easy. Our parents, if you are a "Boomer" made life easy for us. The government made life easy for us. Most of us have never really had to work for, wait for, save for, anything. Credit, parents, government programs, have made everything easy and therefore diminished the value of everything. We have even diminished the value, and intimacy of sex through pornography, and loose morals.

OK, to you who are younger, I sound like an old prude. But, experience has taught me that all that glitters is not gold. Sometimes the most precious thing we obtain are the thing we had to work the hardest for. But, if you never had to work hard for anything, you will not understand that. But, America, stand by, because we are going to have to work hard, just to survive. And even at that, we may not.

So, how does this fit in my PD blog? Well, having Parkinson's and Dementia makes me work hard to appear and act normal, to do the things I used to do without effort. But, I keep trying to be what I was before this challenge. Some folks look at me and say, "Your not sick" or "You look fine." That aggravates me and makes me happy at the same time. Aggravation because people think I am lying about my issues. Well, they don't know how hard I am working to look "Normal" to them.. Happy, because I know I can still "Do it".

What about our country? I don't know. I think as a nation we are about to get the biggest dose of reality we have ever seen. How this "Me first" generation responds will be interesting and will tell the future. When there is no easy food, no easy jobs, no safety net, that's when we will see what we are made of. Protecting yourself and your family will be your job. Providing food, shelter, warmth, will be your job. The future will be interesting, but I am not sure I want to watch. We will see what we will see.

Thursday, May 28, 2009

Parkinson's and Dementia, The beginning

I am a retired Navy Master Chief Gunner's Mate, who worked in the MK 42 and MK 45 5"/54 gun mount world. To say that we "Bathed" in the hydraulic fluid would be an understatement. We did not use protective clothing, respirators, masks, or eye protection of any kind. We often had open cuts and scrapes that permitted anything to enter our bodies. On my first three ships, showers were a luxury. So was drinking water on my first ship, for that matter. I remember going for 30 days without a shower! So, we were constantly in contact with, drenched in, covered by, and breathed in, hydraulic fluid, Mil-F-17111. But, whats to worry? It's just good old petroleum based oil. Nothing synthetic like some of the Snipes (Propulsion Rates) had to deal with. Then, in 1989, the year I retired, the Navy told us that there was a chemical added to the hydraulic fluid, that was carcinogenic and neurotoxic!!! That chemical was tricrysl Phosphate. They changed the formula of Mil-F-17111, but did not flush the old oil out of the hundreds of gun mounts, missile launchers, and gun turrets in the Navy. By this time, I was a tech rep at Naval Sea Support Center,, Atlantic. Doing what? Bathing in hydraulic oil.
The date of this writing is May 28, 2009. A little over 18 months ago, I was diagnosed with Parkinson's Disease (PD) and Dementia. The neurologist, who took 9 months to make that determination, believes a contributing factor was my extensive exposure to the hydraulic fluid in the gun mounts. She has been very aggressive with my treatment, just as she was with the testing that lead her to this diagnosis. I take medication for the PD and it helps with the rigidity. I take Razadyne and Namenda for the Dementia, but they do little for the Dementia's progression. I have good days, and bad days. However, I notice the downward spiral of these degenerative conditions. Not to worry.
My goal of this BLOG, is to share my experiences, good and bad, and to learn from others experiencing the same challenges. Those of us with PD and Dementia have few to talk to, discuss experiences with, and to compare note with. Sometimes, I feel alone, and I am looking for a friend to walk with me these last few miles.
So, hop on board if you have PD and/or Dementia or are a care giver for someone who does. We can learn from each other and get stronger together.

Monday, May 25, 2009

First post

The Beginning: