A great idea

Hank330 note. This is a 2/25/08 email from MaryGrace to me. It gives insight and I believe it adds to this Blog. s/hank330

Dear Hank , God does work in mysterious ways. I have tried to become an advocate for Alzh and help others to understand the disease and some of what a person who has it goes through. Its been a very rough year for my family and me , in coming to terms with this and facing it. I've never been one to run away from a problem, so I 've tried to face it head on and do what I can to help those who have it and the caregivers too. Being a nurse has had its advantages , as I have taken care of people who had it , plus my grandpa Sam had it . I was 15 when he died , and saw what he went through, as the stages progressed. Its truley a sobering life expierence. Back then they called it senilety. (senile)... His son, my unlce Joe had it and Joes son had it. It skipped my mother , Sams daughter. but unfortunately not me. There is a genetic factor involved in my family. I 'd be gald to work with you on this project . Its worth while and something thats ongoing . There is a stigma attached to it . I find many Doctors don't do as much as they could to help the one who has it. Its basically a death sentence! I am in remission right now and savor this precious time I have control of my mind. Yes,, i'd be glad to work with yuo on this .. I do get overwhelmed easily and try to approach things as I feel i can. Right now I'm in a pretty good place mentally, tho I have had a few set backs. I try not to be too hard on myself when those occur. I used to go to pieces when I'd forget things . I handle it much better now. There are a lot of people who have this and more are getting it. Its scarey. I have a few theroies. i just signed you up to receive the Alzheimers weekly news letter. I beleive Arts wife has it . i didn't mention I had it to him. As for the poetry book . I need to put it on the back burner. I'm not ready too tackle it . My husband has been so very sick , and he's not well yet. Its ongoing with him , but at least keeps me focused on him and dealing with his illness. They still are not quite sure what it is. He's gone down hill some. I was in an Alzh chat group for a while helping care givers to be more understanding of their loved ones who are afflicted. Its hard on all concerned. Yes ,, i will work with you on this., and I guess you can go through it with me as it does progress. Its a wonderful idea.!!! I posted some on AD but I didn't want to cram it down everyones throat. My writings have been sporadic, but I have tried to make them interesting.... Mary

Learning to Live With Alzheimers Disease , 2008 1/26/2008

An up date about the illness I am facing and living with.

In May 2007, I was diagnoised with Alzheimers. The devastating news drastically changed my life forever.

Trying to take medications to help slow the disease was a challange as I could not tolerate some of the well known drugs. Stopping my mood swings, memory lapses, and coming to terms with facing the disease and its affects was another problem to cope with. I lost interest in writing, hobbies and life in general. Getting through each day was great task!

Luckily I was able to take Namenda and Exelon. They have slowed the disease down and restored much of my memory. This has been a great repreive and I am thankful for it.
Prozac stopped my mood swings and depression. All these medications are not a permanent fix ,as there is no cure for this disease at the present time.

I have tried to face this disease head on and it has not been easy. We all know we're going to die eventually. When I was confronted with the diagnosis I had to accept reality, knowing full well what the eventual out come will be, if no cure is found.

Facing death is extremely hard ! I don't think one knows what its like until they have done it. Knowing my brain is slowly changing is hard to endure. Knowing nothing that can be done to stop the onslought of this disease is overpowering!

I was lucky to find out early so I could take medications and vitamins to slow its progess . I have been given a second chance for now, and I am making the most of the precious time God has given me.

Tests, advances in medicine , studies and research are being done.
This disease is out of the closet as millions are confronted with it. Attention is finally being paid to it! Hope remains eternal as long as the mind remains healthy and intact. WE ALL PRAY FOR A MIRACLE.

Vitamins which can possible help combat Alzheimer's 7/22/2007

I have felt quite well this last week, almost like the old ME. Its been a great reprieve and I am truly thankful for feeling better at this time. I am currently taking all the vitamins listed below, plus Namenda, and Prozac. My mood swings are gone at present and my memory has improved some. I am starting on Exelon and hope I can tolerate it.

Researchers are not sure if there is a genetic link in families with Alzheimers.Studies are still being conducted. I personally believe there is, as my grandfather, uncle, and uncles son had it, and now I do.

They say FOLATE can reduce the risk of Alzheimers by 55% .
Vitamins B6 and B12 also help to reduce the amino acid homocysteine in the brain.( High levels of homoseteine nearly double the risk of Alzh.)

VITAMINS E and C are two antioxidents
that may help protect brain cells from damage.

OMEGA 3 is thought to reduce the risk of Alzh, but pregnant women and children should be careful of it.
Salmon are a good source of Omega 3 and eating Salmon once a week can lower the risk of the disease, plus eating lots of fresh fruits and vegtables.

HUPERZINE A is a plant derived supplement that is used in traditional Chinese medicine for fever and other
conditions. It might help to reduce inflamation in the brain.

There is also some speculation Asprin might help to reduce inflamation. (Not A Vitamin as u well know)

There are many websites that offer a lot of info about Alzh and many other diseases. My Doctor had told me to take all the Vitamins listed above except Huperzine A. I found out about it on the internet and have been taking it plus Asprin.

If anyone is interested I will
give them the names of web sites or they can check them out themselves.

Thankyou for your continued support and prayers. God bless...MaryGrace

The Changing Patterns in My Life 6/29/2007

My life has changed radically since I received the diagnosis of Alzheimers a few months ago.
The disease overshadows almost everything in our lives. We live it, breathe it, endure it. We still do special things, it has not taken over our lives, its just become a undeniable part of it.

Sometimes when I am having a lively conversation,I forget a word or phrase.
A void(blank space) appears in my brain. I stop talking, trying to remember what I was going to say, or sometimes I just laugh and say, "what u ma call it" and continue talking. Its quite frustrating!

The inside of my body feels like its going faster. Some times I race around the house doing this and that. I have trouble slowing down. Other times I'm the same ole me!

Mood swings are part of this.
I can be happy, all of a sudden something happens and I become upset,snappy and raise my voice. I repeat the same thing over and over. My husband says I sound like a broken record. Its hard to stop whats happening. We have developed a system for him to help me stop. So far its working.

I don't sleep as long as I used to, and I am forgetting how to spell some words. I have to make sure I put items in a certain place to find them.

I enjoy writing, but sometimes I have to force my self to do it.
Maintaining a postiive attitude is hard ,but I know its best for state of mind and well being.

Almost everthing I read on the internet states this is a fatal
disease. I know this, yet I hold on to the hope that with in a few years
there will be a major breakthrough, and perhaps it will not be too late for me or others.

Medications are available to slow it down , but not stop or cure it.
There are some new clinical trails with new medications which break down
amaloids in the brain.
They have not been released by the FDA yet.There is an informative article in June AARP bulletin which tells of new break throughs. You can see this information on line if interested. I will write about some of it at a later time.

Many have illnesses which they face on a daily basis. Each copes differently but we all have the common goal of trying to live and do the best we can with what God has given us.

I ask for your prayers for the multitudes who are suffering from various illnesses, and urge you to write to your state rep. or congressman to approve more monies for research in different medical fields. Thank you and God Bless.......m

Alzheimer's, A Disease of the Mind Part two 6/9/2007

What its like to have Alzheimers and live with it.

My memory problems have persisted. Sometimes I forget where I am going when driving. Names, places,and words are not always in my mind. My short term memory is less. Sometimes I tell my husband or family members the same thing three or four times. They'll say "you already told us" and I say" well now you know again". When I first started becoming repetative, I became quite frustrated. I'd cry as feelings of being inadaquite trancended. I would try hard to concentrate yet I still had memory lapses. One morning when taking one of our sons to work at his regular job site, I became lost. As I drove onto the site, the dirt road went two different ways to the exact same place a few hundered feet away. I didn't know which way to go. My brain felt scrambled and fuzzy! " How do I get there " I asked my son? He looked at me in a weird way and said" go this way mom", so I did. When he got out of the car my tears wouldn't stop. I didn't know what was happening to me, neither did he. Finally I composed my self and drove home. The changes that are occuring are stuble, and happen slowly in small increments. Some days I feel great, and can face anything, then I forget a name, what I was going to say or do. Then I'm ok for a while, then memory loss comes again. Other days I feel axnious, and am repetative and usually end up feeling depressed. Sometimes crying helps, but it doesn't solve the problem. When I become nervous my brain feels jumbled and mixed up. I feel like I'm having spasms in it. I can't think rationally nor can I control it. I try to calm down as the feelings recede. Each day is different as I am struggling to come to terms with this. When I first found out, I felt like a death sentence had been given to me. My hopes and plans for our future and those elusive golden years were gone. I prayed,cried, talked with my husband, family and doctor. I read about the disease. I felt like I just could't endure it. I had seen my grandfather, and uncle die from this , and I did not want to go through it too, yet I know it is a cross which I must carry and I need to accept it and do the best I can to make my familys life and mine a little easier. Trying to maintain a positive attitude helps a lot tho its not always possible. My Doctor started me on Arceipt. I could not tolerate it and became very nausiated so it was stopped. I will be starting a new medication in another week. She also gave me something for my nerves which I take when I really need too. I needed to do something to help turn my life around, so I decided to write about it. I hope it will help others to better understand what is happening to a person who has this. Many of my friends on AD have been very supportive. Some have used their resources to help in my quest for more knowledge. Andy sent me tons of information from England . Debby gave me the name and phone number of a natural herbal magazine and place, and Barbara sent news of an article in the AARP BULLETIN THAT THEY ARE CLOSING IN ON ALZHEIMERS. New medical break throughs are being made! It gives me hope and encouragement to go on. I pray a cure will be found for the multitudes who have it. God bless and good night. Thank you for all your prayers.

The Signs and Symptoms of Sleep Apnea/Alzheimer's Part One 6/8/2007

These are some of the symptoms I have expierenced in the past few years.

About two years ago, I began having problems with my memory. I'd misplace my pocket book, keyes,important papers, forget names. I felt tired and listless after a long nights sleep. I took frequent naps during the day, and still felt tired. Dr Olsen suggested I might have Sleep Apnea. An appointment was made to spend the night at a sleep study lab. After a careful review of the study, it was determined I had sleep apnea. A Pulmonary Function Test, Chest xray, and Echo Cardiogram were done. The tests revealed my lungs were scared and not able to expand as they should, the right side of my heart had enlarged, the mitral and aortic valves were leaking. They felt the loss of memory was due to insufficent oxygen going to the brain. I'm sure other parts of my body were affected too. A "Z PACK MACHINE" was ordered. Each night I strap a plastic mask over my nose. The machine chamber is partially filled with water to help humidify the air being forced into my body. Each week I clean the mask, long plastic tubing hose and chamber with hot water and dilutted vinegar. The sales represenative doesn't always specify the importance of this procedure, but it should be done weeky to help maintain a clean safe airway to the lungs and body. The Z Pack machine , has been a great help and I awake feeling fresh, ready to face each new day. My memory problems have persisted and become worse as time has progressed.... More to follow........

A Killer Disease 6/6/2007

An Open Letter To All My Friends On A.D.

I was recentely diagnoised with Alzheimers. Needless to say I have been having a hard time adjusting and accepting it. There is no cure at the present time and my out look on life is not the same as it was a month ago. Yet I must face the reality of the situation and come to terms with it, which I am endeavoring to do. My family has been very supportive and have helped me get through the first hurrendous weeks of anger,crying, denial then acceptance. (I still hold on to the hope that the Doctor is wrong. Guess every one does that tho) I have prayed more than usual, and I know my Lord will help to ease my burdens . I have decided to write about how it started and the disease itself in hopes it will enlighten others and make them more aware of this fatal disease which afflicts about five million Americans. There is always hope for new medical treatments. That thought sustains and gives me hope at this time. God Bless .....M ( I will be posting my information under stories )

MaryGrace

MaryGrace has Alzheimer's disease and because she is a writer, a nurse, a mother, a wife
and generous she would like to share her experience with others.

This blog is not about how MaryGrace appears to others, it is how Mary Grace
appears to herself.

hank330 is merely the scribe doing the blogging.

We hope you will read along with us,

s/ MaryGrace