DARK CLOUDS

My grief over watching Peggy disappear does not constantly cloud my everyday life.

My life is filled with many sunny days.

But every day or so a little black cloud will move over the sun of my day and block out the sunshine. Those are the times when I think of how much I miss having Peggy in my life. When I remember, the thoughts of her block my sun.

Then, the cloud moves away and the sun shines again in my day.

To stay under the cloud of grief would be too much.

There will be sunshine and dark clouds in my life.

There will be storms to endure and lightening will streak across my world as long as I live.

That is OK because if it was sunny all of the time...How would I grow as a person?

Peggy and watching her disappear will bring dark clouds and sad times but I refuse to stay seated under the dark clouds.

Some days are sunnier that other days and some days are dark with clouds blocking my view of life.

We cannot stop the storms of life but we can decide how we will react to them.

I will miss Peggy for all of my life !

But I know her and I know that she would come and hit me over the head if I sat in the shadow of a dark cloud every day.....

 Because of her.

I Love You Today, Peggy!

Mary Louise

THE GRIEF RAG

I have thought about the differences between Alzheimer's disease and Picks disease. There is not much difference and the prognosis is the same.

How was Peggy chosen for the disease because it is a rare disorder?

What made her vulnerable? I ask that question a thousand times.

I could ask that question a million times and still not get an answer.

Last night, I thought of all that Peggy has missed during the past years. All the birthdays, all the Christmas', all the special family times. Thinking of this made me cry...again.

I could raise my voice and yell that this is not fair!

This is not fair to Peggy and it is not fair to me or to all the people who know and love her.

Life is not fair sometimes, I know that from living and breathing.

It really doesn't matter what takes a person that we love away.

The fact is that they are gone from our lives and they are not coming back.

I need to learn to deal with the emptiness and the pain.

I need to learn to go on with my daily lives.

I need to learn to deal with the anger of being left behind.

I need to learn to touch the emptiness but not hold on to it too tight.

Sometimes, I hold on to the emptiness that Peggy left to tightly.

I can be like a dog with a rag in it's mouth in a contest with another dog. Refusing to let go of the rag of my grief.

 If I let the rag go, the dog on the other end of the rag would win. It is difficult for me to let the other dog win and let go of my grief.

 When I refuse to let go of the rag of grief over losing Peggy...I die too.

 I die while I live.

I think that the person we love looks down on us with tears in their eyes when they see us dying from grief.

They could not control the fate in their lives but we have a choice.

We have the choice to die while we are still living. Continuing to hold tightly to our grief rag. Or we can learn from a life lived and let go of the grief rag and live again.

I can almost hear Peggy's voice shouting to me on some days.

For goodness sake, ML.....

LET GO OF THE RAG!

I Love You Today, Peggy!

Mary Louise

PICK'S DISEASE....REMEMBERING PEGGY!

Peggy saw a neurologist last week and we found out something new.

She may have Picks Disease. It is a first cousin to Alzheimer's disease and the prognosis is the same.

Here is some information on the disease.

What is Pick's Disease

Pick's disease is a relatively rare, degenerative brain illness that causes dementia. The first description of the disease was published in 1892 by Arnold Pick. Until recently it was thought that Pick's disease could not be distinguished from Alzheimer's disease during life. Consequently, it has been little studied, and much less is known about it than about Alzheimer's disease.

Pick's disease differs from Alzheimer's disease in several ways. First, the two diseases produce different abnormalities in the cells of the brain. Pick's disease is marked by "Pick bodies", rounded, microscopic structures found within affected cells. Neurons swell, taking on a "ballooned" appearance. Neither of these changes appears in Alzheimer's disease, and the pathology of Alzheimer's disease (plaques and tangles) is not found in Pick's disease. Secondly, Pick's disease is usually sharply confined to the front parts of the brain, particularly the frontal and anterior temporal lobes. This contrasts with Alzheimer's disease, which is more widely distributed. The two diseases also produce different neurochemical changes in the brain.

These basic differences between Alzheimer's disease and Pick's disease mean that the two tend to produce somewhat different symptoms. In contrast to Alzheimer's disease, in which early memory loss predominates, the first symptoms of Pick's disease are often personality change, and a decline in function at work and home. Personality change may take the form of apathy and indifference toward customary interests, or of disregard for social decorum and for the feelings of others. Poor social judgement, inappropriate sexual advances, or a coarse and jocular demeanor may be seen. Function declines because the patient simply does very little, or displays confusion and poor judgement. Patients may not be highly forgetful. Often times the patient performs well when directed to do something, but cannot undertake the very same thing independently. What is lost is the ability to initiate, organize, and follow through on even very simple plans and familiar activities.

As the illness advances, difficulties with language become common. Patients become unusually quiet, and when they do speak it may be slowly, in brief sentences. They may labor to make the sounds of words and their speech may sound distorted. Some become extremely apathetic -- they may sit for hours doing nothing at all unless prompted to do so by another, while others become extraordinarily restless, and may pace unceasingly. Some patients are hypersexual, and some, like a small child, may place anything they pick up in their mouths. Gluttonous eating occurs in some cases. Attention span is poor; patients seem to be distracted instantly by anything that they hear or see. Later in the disease, patients usually become mute. Restlessness gives way to profound apathy and the patient may not respond at all to the surrounding world. Eventually, they enter a terminal vegetative state.

Pick's disease usually begins after age 40 and is less common after age 60. It is a disease that invariably worsens. The average course is about 5 years, but it ranges from 2-15 years. It is rare, accounting for between 1% and 5% of dementia.

The diagnosis of Pick's disease is difficult during life, because its symptoms are so variable and because they overlap so much with Alzheimer's disease. A CT or MRI scan may show a pattern of atrophy that suggests Pick's disease, and neuropsychological testing may be helpful. In our experience, the experimental brain scanning techniques with PET and SPECT can be revelatory. However, it is very hard to be certain even with an extensive evaluation; Alzheimer's disease can produce the symptoms described above, and Pick's disease may produce symptoms typical of Alzheimer's disease. In all cases, it is critical to obtain a good evaluation in order to rule out treatable conditions that can cause these symptoms.

Unfortunately, neither the cause nor cure for Pick's disease is known. A few studies suggest that Pick's disease may have a genetic component, but most family members are unaffected. Other risk factors are unknown. The treatment of the disease is essentially the same as that of Alzheimer's disease; supervision and assistance for the patient aimed at maximizing his or her quality of life, medications to manage particular symptoms, and emotional and substantive support for the caregiver. The Alzheimer's Association and its network of support groups are an excellent source of help in facing this difficult illness.

I Love You Today, Peggy!

I wish things were different but today there is more reality thatyou will not be coming back to us.

PICK'S DISEASE OR ALZHEIMER'S........

EITHER WAY, PEGGY IS GONE!

I miss you!

Mary Louise

FAIR WEATHER FRIENDS

Peggy and I vowed to always be there for one another and we were until...Alzheimer's started making her disappear in her 40's.

I walk back through my mind to the day that we made our forever friend promise. Our promise was to always be there for one another.     

It was a hot summer day in Birmingham, Alabama and we were keeping cool playing with the garden hose in our front yard. We ran through the cold water screaming and laughing for hours.

Our mother was sitting on the porch with her sister, who was visiting. I heard mother and Aunt Louise talk about fair weather friends as we ran through the cold water of the garden hose.

We finished our play and sat on the steps below mother and Aunt Louise. We listened to every word that they said and smothered giggles and rolled our eyes at their conversation. We were enjoying hearing their grown up talk until they realized we were listening and told us to go and play.

Later that evening, we were walking down our street and discussing fair weather friends, what the word meant and if we knew any one who was like that to us.  We each had a list of people that we thought might be fair weather friends.  We began to put them into categories and name names!

There were the fair weather friends who hurt our feelings on purpose.

There were the fair weather friends who were not really our friends unless we were having a party.

There were fair weather friends who made fun of us one day and liked us the next day.

There were the fair weather friends that we kept hoping would like us and invite us to their house but they never did.

Then, there were the fair weather friends who just forgot to include us. They didn't mean any harm and usually apologized for the oversight.

 I have days when I get angry that Peggy is not there for me any longer. Days when I feel like she has bcome one of those fair weather friends.

I have days when I need her to listen to my life.

Days when I need her to be there for me again.

Days when the empty space that she left is as high as a mountain and deep as the sea.

I have days when I have to remember my promise to Peggy on that hot day in Alabama when we were girls.

I promised her that I would never be a fair weather friend and she promised me the same.

All of Peggys promises were taken away from her theday the Alzheimer's disease entered her mind and made her forget.

I remember two little girls who thought that they had forever as sisters.

Forever came to soon and I am the only one who remembers that day so long ago.The day we made promises and meant them with all of our young hearts. 

We just never realized that sometimes ..... promises are broken and cannot be kept.

The thought never entered our minds that ......

Forever would come so soon.

I Love You Today, Peggy!

I Miss You!

Mary Louise

 

HELLO

I was able to talk to Peggy last night.

She actually said hello! It was so good to hear her voice again though the conversation didn't last long. Her attention span is short and after hello, she didn't have anything else to say.

I told her that I loved her but I don't know if she heard it or even knew what it meant.

That doesn't matter. All that mattered was that I heard her voice and I got to tell her that I loved her.

I thought about the many times that I have said hello to people and not expected any further conversation. I say hello to people that I meet on the street or in stores. They do not know me and I do not know them. I do not expect them to have a long conversation with me about their life or their day.

It is just a greeting.

Peggy was kind enough to say a simple hello.

She doesn't know me and didn't expect anything further from me. When I told her that I loved her she put the phone down and was finished with the call.

I thought about all the people that I say hello to in a day.

I expected and wished for more with Peggy last night. I wanted more from her than a simple hello but she was talking to a stranger and to a stranger.............

 Hello is enough.

I Love You Today, Peggy!

Mary Louise

PARADE OF MEMORIES

A couple of weeks ago, I developed what the Doctor said is tinnitus. It is loud repetitive noises in both ears. It sounds like I have 100 sirens blaring in my head.

It is hard to think or do normal activities. I can mask the noise during the day when there are many distractions but at night it is unbearable and I get little sleep.

The nights are quiet and I cannot mask the noise even with a sound machine.

So during the darkness of nighttime, I think.

Last night, I decided that it is much easier to watch Peggy disappear during the day light hours because there are distractions.

At night, I am sitting with me and my thoughts. I decided last night at 3:30 am that I was not very good company to myself.

I felt nervous and was not kind in the words that I said to myself.

I was impatient and feeling sorry for me!

I felt all alone and at times, scared as the noises in my ears continued.

 I thought last night that it takes practice to be comfortable inside my head. To be comfortable when it is just me in the dark of the night.

I couldn't shut off my mind in the night as memories marched through my head like a parade on the 4th of July.

I noticed that every few minutes, I would get up and walk about the house....Every parade needs a drum major and I was way out in front of my memory parade.

I kept trying to turn the memories off by reading or writing but the parade continued through the rest of the night.

At one point, near dawn, I heard my thoughts say to me...What is wrong with you ML?

I sat down so frustrated while the noise kept ringing in my ears.

Then, it came to me....

What a privilege it was to have a night like last night. Sure, it was uncomfortable, lonely and long but......

I still have the ability to remember and  the privilege of having a parade of memories march through my head.

I am blessed because I can remember.

I have a gift that Peggy has lost.

You can not lead a parade if you have forgotten how to march.

 Peggy does not have any memories to march behind her in the day light or in the night time.

So my long night was exhausting but on the up side....

I was privileged to lead a parade!

I Love You Today, Peggy!

Mary Louise