Hope

Last week I called and emailed as many clinical trials (I just had to look up the words clinical trials lol ) for Alzheimer's.

The first call back I got was from a trial being done you may have heard of in Seattle using a nasal insulin spray. It has shown to not only stop, but sometimes reverse Alzheimer's.  Long story short, I do not qualify. That was a big let down. I did NOT give up! I continued to email and leave phone messages wherever I could find on the internet.

Today I got a call from North Western University medical centers memory center. The lady is going to email me their address and I will be sending all my medical records to them. I have passed a "preliminary" qualification for a program they have that is really more of a scientific study of people with Alzheimer's. They would love to have me, especially given my age. They are currently in the middle of a trial, so once it has already started you can't be in it. She said however they are always starting new ones, and they may even run this one again depending on the results. If I am part of their study I have a better chance I'm hoping of qualifying and getting into a clinical trial. I'm HOPEFUL!

Now off the Alzheimer's subject, my son Kyle will be here in two days, and I want everything to be just perfect. I'm realizing it won't be. I know that I am the one who will be disappointed not Kyle, so I need to just do what I can, and "let it go" in regards to the rest. The important thing is the visit and the time together. Right?

Onto another day, with hope for the future both immediate and distant.

Wednesday is quickly approaching and my 2nd born son Kyle shall be here from Seattle WA for a week long visit. As I anticipate this visit, I hope for everything to be "just right" with all his memories and comforts of his old home he grew up in. I have not seen him for 13 months, so this visit is long over due. Cell phones, emails, facebook and Skype are all great, but there is nothing like warm hugs, sharing a meal together, and just plain real quality time in his presence. 

On the menu during his visit he has requested 3 old favorites, all homemade of course. Mac-N-Cheese, lasagna, and my secret baked tacos. Okay not so secret but they say they are the best tacos ever. The lasagna and tacos will be made in two versions, traditional, and vegetarian. Kyle and his girlfriend are both vegetarians.  

Meanwhile youngest son Corey and I have a mission today, to get some flower blubs planted in the beautiful new flower beds surrounded by river rock we have here in the pictures. It will be a wonderful weekend, and Wednesday can't come soon enough!

My Three Sons

I was married in 1985 at the age of 22. At 23 my son Garrett was born in Geneva Illinois. Garrett started proving what an athlete he was from his first steps at less than 9 months old. He could smack a pitched wiffle ball across the yard at 2, and at 4 we "snuck" him in the 5 & 6 year old soccer league. Little did we know this would set a path for Garrett for his life. Though he did play other sports, soccer was always, and still is his passion. Garrett is now 25 years old, handsome, and still in fantastic physical shape. He still plays soccer and works out. He graduated from NIU business college and works as a carpenter for his father. He can have very proper manners one minute, and be like my ten year old boy the next being a goof ball. Just the right mix!

My son Kyle was born next  in 1987 after a move to Wilson, North Carolina, where we would live for 10 years. Kyle had a love for art as soon as he heard his first song, and held his first crayon. Through the years Kyle has expanded his love of arts to include acting, singing, playing guitar, stand up comedy, sketching, mixed media art, photography, and both acryic and oil painting. Kyle is now 24 and  is currently in a semi-final competition in Seattle for RAW artist of the year. Kyle is a vegetarian, enjoys yoga and is an animal rights activist. He has a wicked sense of humor which he turned into a craft by attending Second City Comedy school in Chicago. He enjoyed doing some musical comedy while also attending Columbia College in the city for photography as well. He now resides in Seattle Washington with his darling girl friend Sarah and plans to continue his education there, while he works as a party planner.

My youngest son Corey was the most difficult birth and yet the easiest. After a bought with cancer when I was young, I was unable to have anymore children. I very much wanted to have another child to add to our family though. When I realized how slim our chances were that we would get a baby because we already had two children, I decided to be happy and content with the two beautiful boys we had. I then put the idea of having another child in God's hands. I prayed that if God wanted us to have another baby, He would make a way. About a month later I received a phone call from the Mother-in-Law of my sister-in-law. It's all rather confusing but this lovely lady had a daugther that worked as a manager of a clothing store. She had a young school age girl working there that was pregnant, and putting her baby up for adoption. She had a couple picked through an attorney and an open adoption process. The couple then backed out at the last minute because they got a baby through an agency. About four weeks after we got that call, we had a beautiful baby boy. He was born in May of 1994, and is now 17. God is good! Corey is now a senior in high school, working part time for his Fathers carpentry business. He loves video games just like most boys, and has a passion for music. He has had this passion for music since he could stand on his own two feet, he started dancing. He now plays the drums, and is in a band, and hopes to carry music into his future when he goes to college.

Though my marriage to the boys Dad ended after 12 years, I will never regret those years. They brought the greatest blessings to me. Garrett, Kyle and Corey. My three sons!

I Love My Life But Not My Health

I have been asked repeatedly how I stay so positive given all the physical problems I have, the Alzheimer's diagnosis, and caring for my Dad who has Alzheimer's. I almost hate to burst everyone's bubble, but I am not like that if you were living with me. I just make a choice, each time I post on facebook (this is where I'm told I am bubbly and upbeat) to look at the positive in my life, and not the negative. I could easily focus on the negative in my life, but I do believe it would bring my spirit down along with each post. If I focus on posting about the positive things, sometimes they are very small things, but positive still the same, it truly does help throughout my day. I might whine a little less during a headache (yes sometimes I whine or moan!), migraine, neck pain, facial pain that I usually have on a daily basis. I also have pain all over my body, along with involuntary muscle movements which at this point are the least of my problems.  I tell you this not so you would feel badly for me, I don't want you to. I tell you this because I think we all have issues, some big, some small that bring us down. Physical, mental, financial, whatever it may be, they are our issues. We can choose to focus on them and actually bring ourselves into a downward spiral, or we can choose to focus on the good things and how fortunate we are to have them. I seriously believe that when I do this, it does help dull, even if only a tiny bit sometimes, my pain. Wallowing in self pity surely does at least one thing, it makes the mental state worse. Most problems in life require us to have a strong mental state, which as I know is many times easier said than done.

On another day, I will tell you how I was able to get the mentality of "there is always someone out there that has it worse than you. I know someone that has a situation that she has dealt with for 27 years, far worse than my situation. She does not complain. She does not ask why me. She finds joy in the little things, and she is my hero and inspiration.

On good days I can clean my house and cook a gourmet meal. I feel so good when it is accomplished. On bad days I'm lucky to fill the dishwasher, and  yes, sometimes I feel guilty that is all I accomplished for the day. 

I took my diagnosis of Alzheimer's in surprising stride. Especially considering I watched my mother go through end phases of the disease, and am watching my Father now as he struggles with the disease. Suddenly it hit me, and yes I finally cried. My brain is dying. I am........dying. No one knows how long it will take for the disease to finally take me, but one thing is sure, it won't reverse itself. Will I be around or with it to see my first grandchild born? Though I am on Aricept, it only works for some people, and it doesn't stop the disease for those people, it only slows it down some. Meanwhile, my husband lit a fire under me and inspired me not to give up there. To take that time I have on "good days" and do more research. That is my new project. I will be doing research on diets that can help, but also test studies that are looking for patients. I'm especially interested in the study with nasal insulin spray that shows great promise. I don't know if they have an open on going study, but I did find the research scientist that is heading the project to try to contact. If it is closed, so be it. There are a lot of studies out there, and I'll keep looking to find one that I can be part of.

Today I'm so thankful for my husband, my sons, my father, my family and friends like always. I'm thankful for my dogs, the fresh crisp air blowing through the windows right now, and my warm hazelnut coffee by my side. None of us knows how long we will be here. It could be a day, it could be another 50 years. We better cherish what we have on this day. If it ends up being our last, will it be well spent?

Dad's Alzheimer's

As long back as my memory serves me, until his retirement, my Dad valued a hard days work. He felt that if you put in a hard days work you should be rewarded for it. He was an entrepreneur who treated his employees not only well but with respect. He taught his children that no one, not even he was "above" scrubbing the toilets and sweeping the floor. He proved his values by walking the walk, not just talking the talk, in his daily actions. Employees were given raises based not just on how long they worked there, but how hard they worked. Something that has been lost now in most companies. 

Though he valued the family business he built, #1 in his life would always be my Mom, his wife, Carolyn. They not only worked together, they golfed together, vacationed together. He truly never tired of her company, because he adored her up until the very end.

As for him as a Father, the time that I remember most when I was growing up was him coming down to the track when I used to run, and helping me with my long jump. Over and over he would help me get my steps just right to hit that board, measure how far I went, and give me advice. I'm sure he would have liked to take his one and only day off work and take a much needed nap (which he also enjoyed) but he seemingly did this with joy.

Once my Father and Mother retired to Florida my mother almost immediately became sick. All the things that my Mother once did, now my Father would have to do as a care taker.  He took care of all his usual chores, and now hers as well as she slowly became unable to do them. Then He got sick. He had to have an aortic anyerism  repaired (he had one also when he was 55) which would forever change his physical abilities, but would also save his life. After that they knew they would need help from family and moved back to Illinois.

After being here about a year, they moved into an assisted living home, and very soon after Mom had to live permanently in a full time health care facility. She required 24/7 one on one care. It broke my Fathers heart. Being with her seeing her deteriorate broke his heart, yet also being separated from her broke his heart. Faithfully, each and every single day for the rest of her life, he would go and visit her for one hour in the morning, and one hour in the evening, at the same time everyday.

Now fast forward to today. Dad lives with Scott and I. He has mid stage Alzheimer's. He was over medicating himself and ended up in the hospital with kidney failure and we knew it was time for him to move in. He can still converse but his short term memory is literally gone. His long term memory is now getting very muddied to say the least. He doesn't even remember how my Mother passed away, nor how he proposed to her. This woman he adored so very much. Having said all that he can still play 9 holes of golf once a week, and watches Wheel of Fortune with us Monday - Saturday when we have dinner together. I truly do cherish every single day that I have with my Father. He was always the rock of our family. It is an honor to be able to give back a little after he gave so very much.

Dogs and Geese

Scott and I were sitting on the sofa making a shopping list, with the windows open. I said "I wish those crazy dogs would stop barking".  He said, Nancy, those aren't dogs, those are geese.  True story. ALZ.

Moms Alzheimer's

While setting up this blog this morning trying to find an appropriate background for it, I ran across this one that looked like a bed of peach colored roses. If I am being color blind, don't tell me! I chose it because peach was my Mother's favorite color, and roses were her favorite flower. Mom loved her flowers, and I dedicate this blog to her.

My Mom was good to me to the point that perhaps I was even a little bit spoiled. Okay, a lot spoiled. I was her only daughter, and her youngest of 4 children, so what do you expect? She worked side by side with my Father in the family business they built. Imagine being with your partner 24/7. They did it, and successfully. I don't recall them ever speaking even so much as a cross word to each other. It was true love, and respect.

My Mother could do anything she put her mind to. She knew how to do every kind of craft. Knitting, sewing and ceramics were her specialty though.  She also took up golf in her 40's and excelled at that as well. The things that most that knew my Mother remember her for though, is her infectious smile, and her voice. Yes, I said her voice. She had the most beautiful soprano voice I've ever heard in my life. Listening to her singing and playing her piano were just part of our life that I think until we were older we took for granted in our home.

I knew something was wrong with when she didn't want to sing, she got lost in her own neighborhood, and confused a internet instant message for a fax. I was so scared I thought she had a stroke or a brain tumor. After time and testing we would find out that she had Alzheimer's. She and Dad had retired early and moved to Florida, only to find out she had Alzheimer's? This must be a cruel joke.

Mom lived 7 more years after that, all of them steadily downhill. By the end she didn't know any of us we don't think, except for Dad. We got the feeling she still knew him. Of course there was no way to know for sure, because Alzheimer's had stolen her ability to speak. All she could do was mumble. It was especially hard if she would mumble with what looked like a painful look on her face, and you knew she was either troubled by something or in pain, yet you were clueless how to help her.

In the end, Mom went with all of us surrounding her bed. Though she lay with her eyes closed, we played her favorite music next to her bed. Her left leg kept slipping off the bed onto the floor and I would put it back up on the bed, until finally, shocked, I realized what she was doing. While non-responsive in every other way, under the care of hospice, with all of us standing vigil by her bed, she was sliding her foot to the floor, and tapping her foot, to the beat of the music. Just in case I was imagining it, I put her leg back up on the bed. Plop, her leg went right back down, and she was tapping her foot again, to the beat of the music we played for her. Knowing that she could hear we talked and prayed until she passed from her earthly life, to her heavenly one.  She still sings, now with a choir of angels. That beautiful voice is back. No Alzheimer's can stop her from singing now.