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


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.