Up from the grave he arose

Wow! What an experience I’ve just had. Thing only thing I barely remember last Sunday was that the Steelers won the Super Bowl. The last couple of days had me wondering. I do think it’s the worst I have ever been with the LBD.

I’ve underlined the worst symptoms I had in the following review of LBD which I posted last week.


Lewy Body Dementia Symptoms as explained by the Lewy Body Dementia Association

Dementia is a process whereby the person becomes progressively confused. The earliest signs are usually memory problems, changes in their way of speaking, such as forgetting words, and personality problems. Cognitive symptoms of dementia include poor problem solving, difficulty with learning new skills and impaired decision making.

Other causes of dementia should be ruled out first, such as alcoholism, overuse of medication, thyroid or metabolic problems. Strokes can also cause dementia. If these reasons are ruled out then the person is said to have a degenerative dementia. Lewy Body Dementia is second only to Alzheimer’s disease as the most common form of dementia.

Fluctuations in cognition will be noticeable to those who are close to the person with LBD, such as their partner. At times the person will be alert and then suddenly have acute episodes of confusion. These may last hours or days. Because of these fluctuations, it is not uncommon for it to be thought that the person is “faking”. This fluctuation is not related to the well-known “sundowning” of Alzheimer’s. In other words, there is no specific time of day when confusion can be seen to occur.

Hallucinations are usually, but not always, visual and often are more pronounced when the person is most confused. They are not necessarily frightening to the person. Other modalities of hallucinations include sound, taste, smell, and touch.

Parkinsonism or Parkinson’s Disease symptoms, take the form of changes in gait; the person may shuffle or walk stiffly. There may also be frequent falls. Body stiffness in the arms or legs, or tremors may also occur. Parkinson’s mask (blank stare, emotionless look on face), stooped posture, drooling and runny nose may be present.

REM Sleep Behavior Disorder (RBD) is often noted in persons with Lewy Body Dementia. During periods of REM sleep, the person will move, gesture and/or speak. There may be more pronounced confusion between the dream and waking reality when the person awakens. RBD may actually be the earliest symptom of LBD in some patients, and is now considered a significant risk factor for developing LBD. (One recent study found that nearly two-thirds of patients diagnosed with RBD developed degenerative brain diseases, including Lewy body dementia, Parkinson’s disease, and multiple system atrophy, after an average of 11 years of receiving an RBD diagnosis. All three diseases are called synucleinopathies, due to the presence of a mis-folded protein in the brain called alpha-synuclein.)

Sensitivity to neuroleptic (anti-psychotic) drugs is another significant symptom that may occur. These medications can worsen the Parkinsonism and/or decrease the cognition and/or increase the hallucinations. Neuroleptic Malignancy Syndrome, a life-threatening illness, has been reported in persons with Lewy Body Dementia. For this reason, it is very important that the proper diagnosis is made and that healthcare providers are educated about the disease.

Other Symptoms

Visuospatial difficulties, including depth perception, object orientation, directional sense and illusions may occur.

Autonomic dysfunction, including blood pressure fluctuations (e.g. postural/orthostatic hypotension) heart rate variability (HRV), sexual disturbances/impotence, constipation, urinary problems, hyperhidrosis (excessive sweating), decreased sweating/heat intolerance, syncope (fainting), dry eyes/mouth, and difficulty swallowing which may lead to aspiration pneumonia.

Other psychiatric disturbances may include systematized delusions, aggression and depression. The onset of aggression in LBD may have a variety of causes, including infections (e.g., UTI), medications, misinterpretation of the environment or personal interactions, and the natural progression of the disease.

I’m coming back to myself once again–

Now to start catching up with 1009 emails. I’ll just do it little by little.

Warmly………David

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Boys and Sports

First of all, I’d like to thank those of you who’ve already voted for the blog, for all those who’ve made comments and to those of you who like the new blog look. I keep experimenting with different themes………I think I’ll stick with this one. It gives me a few more options which I can use over time. Plus it just seems easier to read.

I thought I’d post a little review on the symptoms of Lewy Body Dementia.

Lewy Body Dementia Symptoms as explained by the Lewy Body Dementia Association

In this section we’ll discuss each of the symptoms, starting with the key word: dementia. Dementia is a process whereby the person becomes progressively confused. The earliest signs are usually memory problems, changes in their way of speaking, such as forgetting words, and personality problems. Cognitive symptoms of dementia include poor problem solving, difficulty with learning new skills and impaired decision making.

Other causes of dementia should be ruled out first, such as alcoholism, overuse of medication, thyroid or metabolic problems. Strokes can also cause dementia. If these reasons are ruled out then the person is said to have a degenerative dementia. Lewy Body Dementia is second only to Alzheimer’s disease as the most common form of dementia.

Fluctuations in cognition will be noticeable to those who are close to the person with LBD, such as their partner. At times the person will be alert and then suddenly have acute episodes of confusion. These may last hours or days. Because of these fluctuations, it is not uncommon for it to be thought that the person is “faking”. This fluctuation is not related to the well-known “sundowning” of Alzheimer’s. In other words, there is no specific time of day when confusion can be seen to occur.

Hallucinations are usually, but not always, visual and often are more pronounced when the person is most confused. They are not necessarily frightening to the person. Other modalities of hallucinations include sound, taste, smell, and touch.

Parkinsonism or Parkinson’s Disease symptoms, take the form of changes in gait; the person may shuffle or walk stiffly. There may also be frequent falls. Body stiffness in the arms or legs, or tremors may also occur. Parkinson’s mask (blank stare, emotionless look on face), stooped posture, drooling and runny nose may be present.

REM Sleep Behavior Disorder (RBD) is often noted in persons with Lewy Body Dementia. During periods of REM sleep, the person will move, gesture and/or speak. There may be more pronounced confusion between the dream and waking reality when the person awakens. RBD may actually be the earliest symptom of LBD in some patients, and is now considered a significant risk factor for developing LBD. (One recent study found that nearly two-thirds of patients diagnosed with RBD developed degenerative brain diseases, including Lewy body dementia, Parkinson’s disease, and multiple system atrophy, after an average of 11 years of receiving an RBD diagnosis. All three diseases are called synucleinopathies, due to the presence of a mis-folded protein in the brain called alpha-synuclein.)

Sensitivity to neuroleptic (anti-psychotic) drugs is another significant symptom that may occur. These medications can worsen the Parkinsonism and/or decrease the cognition and/or increase the hallucinations. Neuroleptic Malignancy Syndrome, a life-threatening illness, has been reported in persons with Lewy Body Dementia. For this reason, it is very important that the proper diagnosis is made and that healthcare providers are educated about the disease.

Other Symptoms

Visuospatial difficulties, including depth perception, object orientation, directional sense and illusions may occur.

Autonomic dysfunction, including blood pressure fluctuations (e.g. postural/orthostatic hypotension) heart rate variability (HRV), sexual disturbances/impotence, constipation, urinary problems, hyperhidrosis (excessive sweating), decreased sweating/heat intolerance, syncope (fainting), dry eyes/mouth, and difficulty swallowing which may lead to aspiration pneumonia.

Other psychiatric disturbances may include systematized delusions, aggression and depression. The onset of aggression in LBD may have a variety of causes, including infections (e.g., UTI), medications, misinterpretation of the environment or personal interactions, and the natural progression of the disease.

All right now. Enough of some serious material. Now it’s time to play. These are the kind of puzzles which make me feel really smart. The more I do, the smarter I feel. I hope they help you just as much.

Boys and Sports
by Shelly Hazard

Wilma and three other women were comparing notes about the achievements of their sons. Each son had a favorite sport and each was a star player. The boys ranged in age from 10 years old to 13 years old. Determine the full name of each mother, the name of her son, the sport each son played, and how old each son was.

1. Sara Copper’s son, who wasn’t Brian, didn’t play soccer.

2. The boy who played basketball was the youngest. Mrs. Green’s son was a year younger than the boy who played baseball but a year older than Sara’s son.

3. The oldest boy, who wasn’t Mark, was Sharon’s son but he didn’t play hockey.

4. The boy who played baseball was a year older than the boy who played hockey.

5. From youngest to oldest, the boys were Mark, Teresa’s son, Mrs. Silver’s son, and Eric.

6. Mrs. Wild’s son was two years older than Chris.

boyandsports1

boysandsports2

Click here for the Solution

Warmly………David

October 13, 2008 Columbus Day

Be brave. Even if you’re not, pretend to be. No one can tell the difference.

 

 

 

Today, I still feel fatigued and am just tremoring away. A very unpleasant experience. My voice has been hoarse for quite sometime now with a lot of coughing. Am not sure if I have residual cold symptoms or if they are side effects of the Namenda. Time will tell, I’m sure.

 

 

Well, the Vivimind has elicited some excitement. They say a good journalist reports both the positive and negative aspects when discussing a topic. Here are some of the negative stands which can be found online:

 

1)  http://www.alzforum.org/new/Vivimind.pdf

2)  http://www.alzforum.org/new/detail.asp?id=1937      

3)  http://www.alzforum.org/drg/drc/detail.asp?id=84

 

 

My neurologist, Dr. Lopez, had discussed the trials of Vivimind and said they were negative. However, he informed me that he is seeing some clinical positive results in spite of the negative studies. So many things in life are controversial. My intent is not to persuade others to take this. I have decided to take it. I don’t want to take a chance. So far, I’m not seeing any side effects. So, we’ll see. I guess time will tell.

 

I left off the end of by blog on October 8th by saying, “I remember very little of that odyssey other than I sat in the backseat of the car silently crying for several hours. What a loss. A career. Friends. A lovely home. Beautiful country and scenery. Goodbye California and San Francisco. I will never forget you. You’ve enriched my life and have fertilized my mind forever. Thank you.

Tomorrow……..the odyssey.”

 

The odyssey (an extended adventurous voyage or trip). I remember little of those 6 days across country to Pennsylvania. Pam says it was anything but adventurous. She said that I became psychotic, that I was frightened that the devil was in the car with us, was uncooperative, combative and litigious with Pam and that I would just glare with hostility. I kept telling her to take me back to California and that I demanded that she take me to a bus station. I became worse whenever Pam and Chad (my stepson) would try to humor me. I physically lashed out at Chad for no apparent reason. Pam later told me that the neurologist in California told her to expect this behavior from me but she didn’t realize that it would get to that point. I had just started the Aricept and it had not yet helped me up to that point in time.

 

We arrived on New Year’s Day at Pam’s father’s and step-mom’s home. It was originally planned that we would stay with them until we could have a small retirement home built for us. The original plan was that it would take about 6 months for the house to be completed.

 

After several weeks of 5 adults, 1 St. Bernard and 2 Shitsu dogs in a small house, we decided to rent an apartment pending the construction of our new home. In mid-January of 2008, we fortunately found a small 2nd floor apartment to rent in Conneaut Lake. It’s a small town about 100 miles north of Pittsburgh and about 45 miles south of Erie, PA. Right in the snow belt!

 

It turned out that we couldn’t move into the new house until September 5, 2008. Do I dare even try to describe what a long, hot, depressing, apathetic summer it was with little to no local family support. Part of LBD is a dysfunction of the autonomic nervous system which causes me to have difficulty in thermoregulation. Just a hint of heat causes me to sweat and to feel sick. I can relate to anyone with hot flashes! The 2nd floor didn’t help. The average temperature ranged between 85-90 degrees. We decided to purchase a portable air conditioner. Now one would think that would be a godsend. Oh, yea. Down to 83-85 degrees. Just great. With everything in storage, we lived like college students. Cardboard boxes for end table, blow-up air mattresses for beds, and 2 patio chairs to sit in. Oh yea. We also used 2 folding chairs too. So, there was little to do. Plus the heat and humidity. We spent most of our time on the bed. I was depressed. I thought it was the apathy and depression which can accompany LBD. Hind sight is 20-20. The loss of stability in California. Work, friends, a routine. The loss of the ‘old David’ which I knew well. The changes in living conditions. Of course. It doesn’t take a psychiatrist to realize depression probably should occur in most people under these conditions. But we had a hard time being objective in the middle of it all.

 

I never felt so happy in a long time as I did on the day we moved into our home. What a relief. And my mood immediately improved. Ah, thankfully, it wasn’t that old Lewy guy causing it. We all perked up and began to unpack. Our home in CA was at least twice as big as our home now. Needless to say our garage is filled to the max with boxes. We didn’t have enough time to sell much of our stuff in CA, so we’ll have a big garage sale next Spring. We won’t get bored this winter. We’ll be rooting through boxes in the garage!

 

Pam, Chad, Scooter, Wiggles and I have adjusted well to our house and are very happy. We live across from an 18 hole golf course and are just 3 blocks up the street from Conneaut Lake – the largest natural lake in PA. It’s 1 mile wide and over 3 miles long. One of these days, I’ll post some pics of our home. But enough for today.

 

Dr. David

 

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