Pick's Disease is a progressively degenerative neurological disease similar to Alzheimer's Disease for which there is no known prevention, or cure. Pick's Disease affects the frontal and temporal lobes first, with earliest symptoms showing up as changes in personality and a decline in function at home as well as work. Pick's Disease is frequently first diagnosed as stress or depression and then as Alzheimer's disease. The treatment of Pick's disease is the same as for various stages of other dementias such as Alzheimer's. This accounts for so little information being available related specifically to the treatment of Pick's Disease.

Pick's Disease accounts for just five percent of all progressive dementias.

In some ways, Pick's disease is similar to Alzheimer's disease. However, Pick's disease tends to affect only certain areas of the brain, while Alzheimer's can affect any part.

Pick's disease is rare. It is more common in women than men. It may occur in people as young as 20, but usually begins between ages 40 and 60. The average age of onset is 54.

The disease can progress slowly. Over time, the tissues in two parts of the brain (the temporal and frontal lobes) shrink. This shrinking is called atrophy. Symptoms such as behavioral changes, speech difficulty, and impaired intellect occur gradually, but continue to get worse.

People with Pick's disease have abnormalities called Pick bodies and Pick cells inside nerve cells in the damaged areas of the brain. Pick bodies and Pick cells contain an abnormal form of a protein called tau. This protein is found in all nerve cells. But some people with Pick's disease have an abnormal amount or type of tau. The exact cause of these abnormalities is unknown.

Upon autopsy, patients are typically found to have atrophy of the frontal and temporal lobes of the brain. Patients with more severe behavioral symptoms are often found to have this damage focused in the frontal lobe.

When viewed under the microscope, some nerve cells in this area have characteristic abnormalities (inclusions called Pick bodies and swollen cells called Pick cells). These abnormalities are named for the neurologist Arnold Pick, who first identified them in 1892.

The marked atrophy of Pick's disease, a senile dementia, produces "knife-like" thinning of the gyri in frontal lobes and temporal lobes.




What are the signs and symptoms of Pick's Disease?

Because the frontal lobes affect behavior and emotional response, people with Pick's Disease will usually show signs of changes in personality before they manifest evidence of dementia. This may begin as impulsiveness or a lack of inhibition. While the progression of symptoms in Pick's Disease is fortunately slow, symptoms do worsen over time.

The following symptoms are typical of patients with Pick's Disease.

More severe symptoms will appear in later stages of the illness:

Behavioral changes

Impulsivity
Obsessive/compulsiveness (for example, overeating or only eating one type of food)
Drinking alcohol to excess (when this was not previously a problem)
Rudeness or impatience, leading to aggression
Poor judgment
Withdrawal or seclusion
Inability to function or interact in social situations
Inability to hold a job
Lack of attention to personal hygiene
Sexual exhibitionism or promiscuity

Emotional changes

Abrupt mood changes
Lack of warmth, concern, or empathy
Indifference to events or to one's environment
Easily distracted; difficulty maintaining a line of thought
Unaware of the changes in behavior
Decreased interest in activities of daily living
Language changes
Reduced quality of speech: shrinking vocabulary, difficulty finding a word
Difficulty speaking or understanding speech (aphasia)
Repeating words others say (echolalia)
Weak, uncoordinated speech sounds
Decreased ability to read or write
Complete loss of speech (mute)

Neurological/physical problems

Increased muscle rigidity or stiffness
Difficulty moving about
Lack of coordination
General weakness
Memory loss
Urinary incontinence

In my career I have taken care of only one person suffering from Pick's Disease. She displayed many of the symptoms listed above. When walking into the facility and taking a quick glance at the residents she would definitely stand out. Her make-up was very over done, bright blue eye shadow with bright red lipstick. She would wear 3 watches at a time, 15 rings, 10 necklaces. She liked men, even having romantic thoughts about her closest relatives, her doctors, and male staff. She would eat to the point of getting sick, and continue to eat. She had severe mood swings, and would say inappropriate things. When the frontal lobe the of brain is affected the personality will change showing disregard for social decorum or the feelings of others.

It is a devastating disease, with no cure. The behaviors are managed with medications. I found this resident to be delightful at most times. She reminded me of the truthfulness of a child, saying what was on her mind without knowing it may be the most inappropriate thing to say at the time. I know she would be mortified if she knew. She was, and still is a grand woman holding a masters degree in music and was a teacher for many years. She has a beautiful sense of humor and will chuckle at herself, knowing at times, she had shocked and amazed the people around her. She is an angel.

Life deals some dreadful hands. Embrace each day.

Keep away from people who try to belittle your ambitions. Small people always do that, but the really great make you feel that you, too, can become great."

-Mark Twain-

Getting back to the information of caring for the elderly.

I thought it would be helpful to clarify the types of facilities that are out there. There are many levels of care. My long term project which, I'm sure someone will beat me to completing, is to make a check list or guide for families to follow when they find themselves in crisis. I can't even count the number of phone calls from people I have received in my career, overwhelmed people, looking for answers not knowing where to begin as their loved ones decline or become confused and wander off and it is no longer safe for them to live independently. The family members are emotionally torn, frustrated, and frightened.

Laws and regulations differ from each state, they also differ from each facility in the state so the information will be broad but hopefully can shed a little light.



First type of living would be an independent living arrangement, like a retirement village. The requirements are people have be over a certain age to qualify. Most are apartment-style, people can come and go as they please. They offer a few services like bus transportation to the grocery store and outings. Some offer meals, maybe 1-2 meals a day. They have become very trendy having on-site gyms and swimming pools. Almost all will have emergency call lights in place in the rooms just as an added bonus of safety. This type of arrangement is perfect for elderly people who want the hassle-free living of not having to take care of a huge home, yard work, snow removal. It is a way to keep the independence of living alone, but with a little more security and piece of mind.

The second type would be the Assisted Living environment.

This type of facility is designed to maintain as much independence as possible for the resident. Assisted living regulations are very minimal. Each facility puts their own policies in place as to how much assistance they are going to provide. There can be no skilled nursing interventions in an assisted living setting. What does that mean? Any person residing at an assisted living facility must be medically stable. Nurses monitor but can not act on situations as they would in a skilled (nursing home) setting. Skilled interventions, such as wound care would require hiring nurses from an outside agency like the Visiting Nurse Association. The basic rule for assisted living is the resident must be able to get themselves to meals and feed themselves. When these tasks can no longer be performed, the resident and their family has the choice to keep them at the assisted living facility and hire outside people to come in to assist them (which is extremely costly) or move them to a higher level of care.



The cost for assisted living varies. Some facilities will charge the resident by how much assistance they are requiring. It goes on a point system. A monthly evaluation is done, usually by the nurse, and scores are added up. The score is then found on a pricing chart. Other assisted livings will charge a set rate. Most assisted livings in the midwest are between $3,000 and $4,000 monthly. Shopping for an assisted living facility would probably be the most challenging as asking the right questions on how much assistance they provide would be tough. Some will deal with issues such as incontinence, diabetes, behavior issues and some will not.



There are assisted living facilities which focus on memory support. They follow the same guidelines as a regular assisted living facilities but they will usually be secure units. With memory support, Alzheimer's disease and the different types of dementia the facilities understand there are certain things that come with those specific needs. Incontinence, behaviors, cueing from staff to perform activities of daily living (ADL's). Memory support units are usually higher in price on the assisted living scale because they offer personalized care and the staff gets specific training in dealing with these residents. It is a more structured environment and activities are focused on keeping the mind stimulated and active.


The last type of facility is the Skilled Nursing Facility (SNF). The "Nursing Home." This type of environment is for when assisted living is no longer suitable. The resident has become medically unstable requiring care that certified nursing assistants and skilled nursing interventions. The CNA's may have to assist in feeding and toileting, the nurses to monitor blood sugar levels or wounds. The SNF is usually the last stop. A sad statement, but true. There are too many reasons to list why someone is admitted to a skilled facility, and I have seen nearly every one.



I have worked in all environments mentioned above, except the independent retirement village. I know they all provide a much needed service. They all have good and bad examples of how things are supposed to be. I've been lucky in my career to have been associated with caring people. People who really strive to provide the best care possible. Reputation is huge in this business. If you are ever to visit, or are ever shopping for placement for a loved one. I tell people to look at certain things.

1) Look at the outside of the facility, is it trashy or not well kept. Good places always keep everything, even the outside in tip top shape.

2) Tour the facility. Take a big wiff...does it smell like urine?? Look at the carpets, any spots or fraying. If the facility smells the residents probably do too.

3) Introduce yourself to staff. Some people find this uncomfortable, but see how you are received. Warm, smiles, handshake? Ask them how long they have worked there and get a feel for their reaction.

4) Watch interaction with staff and residents, are there kind words, smiles, warm touches. Are the residents just sitting staring into space or is staff involved in something, even if it is conversation.

5) Look closely at the residents. Are the men clean-shaven. Look at fingernails...are they clean and trimmed? Are people in clothes that match or is their lunch spilled down the front? Is there bed head ?? (One of my pet peeves BED HEAD!!)

6) Ask a lot of questions. Ask when their last state audit was and the results. Most facilities are listed on web sites with the outcomes of most recent audits. Have a list of your loved ones most important needs and make them explain how they will meet those individual needs.

7) Ask about visiting hours. Every facility I've worked at had an open door policy and family members could come day or night to visit. This should be the case, this is your loved ones home you should be able to visit whenever you like.



We all have a common goal, and we know it's all for our future good.
-Marta Kristen-

I never did get around to posting after we returned from vacation. Life has been hectic. The changes in my life have been so extreme. I did want to post the pics and things from my farewell party at my last job. Mostly for closure for me.

The last day turned out to be a huge gathering, although I had expressed I wanted to exit quietly.

They ordered a lovely cake.



Anna, my nurse and side kick bought me this beautiful statue...the inscription on it reads:

"Joy, You are a terrific nurse and an inspiration to us all, Love Anna.



Anna had a hard time at the gathering and finally lost it in the office. Brian comforted her as she sobbed. We worked as an incredible team. I'm sure she felt as if she was losing her only support system.



Above is Anna and one of my Angels, Gracie.

People from all over the Health Plaza came to share in my last day. Some of them I had worked with for years and years. It was very special to me I received many cards, well-wishes, and gifts. The staff hung around for a long time like they just didn't want the era to end. So many good times, so many laughs.

Brian did come in the big truck. I'm glad he was there, he gave me the strength to keep my head high and keep smiling when I wanted to cry.




The article was in the Wednesday's paper when we were on vacation. Brian felt it was a little disappointing cause he wasn't pictured in it...he feels he should be called "Hollywood."
Don't encourage such behavior please.



There was a quick appearance by "The Large and in Charge Nurse." I put the inflatable costume on, made my rounds, said my good byes and got into the semi with Brian....and as we left blew the air horn and waved. It was over in a flash.

I visited there a couple weeks ago, I had to pick up my last check. I went late so the administrative people weren't there. My peeps were so happy to see me, and I them. My precious Emily cried. Vealla grabbed me and hugged and rocked...and said "there's my friend." I miss them terribly. I sit and think of them late at night and wonder if their needs are being met...the way that I used to do it with kind words and smiles. I know the decisions I have made have effected a great many people. Life will go on, but not quite the same....I need to take care of people, people with dementia, elderly people, or I'm lost and empty.


This is my purpose in life.

The picture below was given to me by my staff....yep, there she is Large and in Charge!!

WANTED:

Outlaws~~~~~~~~~~~



We're going to make a complete blog of our trip... see you there!!

Visit our vacation pics at:

www.brijoy2006.blogstream.com or click the " Our Vacation 2006" under the blogs I like.