Tuesday, October 25, 2011

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?


  1. I would say to you never give up as long as you can fight. Enlist others to help you do research, you never know what someone else may come across. Visualize yourself in the future, surround by your grandchildren. Sometimes visualization produces subconscious actions that bring those thoughts to fruition. I had to deal with a rare case of cancer almost eight years ago. That is how I dealt with it. I will keep you in my prayers and if there is anything I can do, please let me know.

  2. I lost my mom two years ago to Alzheimer's and I appHerHerlaud you for your attitude. I don't know that I could do that after seeing what mom went through, especially the last few months. My mom's sister had also passed years prior from the same disease. Her younger sister is now on Aricept also. So, of course, my sister and I are very concerned about our own futures. I am almost 60 years old and still run a home daycare so I am still very active. I try to do what I can also to prevent the disease such as the Vitamin B and Fish Oil and taking an Advil everyday. I would really be interested in hearing more about what you have come across in your research and in particular the study on the nasal insulin spray. What does insulin have to do with Alzheimer's? I am the team leader for the Alzheimer's team in the Care Ministry at my church. So, any information you can share that I can then share with others would be greatly appreciated. You and your family continue to be in my prayers.

  3. You can get on aricept without a diagnosis since you have a strong family history of the disease. You can also be tested for the familial Alzheimer's gene. As for the test study if you google it you will find out info on it. It is a test study that so far shows it may stop or even reverse Alzheimer's. From what I am told however it will take many more studies before they would be able to get FDA approval. I'm told it could take as long as 20 years, which for me would be too late. The only way I could get help from it, is to actually get ON a test study. It is not even sold in this form in other countries. In order to understand how it works you need to look it up I couldn't explain it in my own words. Here is the name and info for the Dr. doing the study. Google her name and insulin spray for Alzheimer's. You will find several articles for it:
    Suzanne Craft PhD

    Phone: (206) 277-1156
    Fax: (206) 764-2569

    Site: VA Puget Sound Health Care System
    VA Seattle
    1660 S. Columbian Way, (182B)
    Box 358280
    Seattle, WA 98108
    Link to CV
    Assistant: Darla Chapman


  4. What a beautiful heartfelt post Nancy!! God Bless you. I am caregiver for my hubby of 55 yrs & I am a lot like you. I try to find some humor in some of his silly antics & there is also much love & gratitude shown & sometimes it is very humorous! For example--yesterday, he told me I was a "good woman" for turning the TV on for him. Yes, that was my sunshine for the day. Who could ask for anything more?? :-) Yes, there are days that I shed tears watching him so lost in his world but I try not to dwell on them. Thank you so much I am so grateful for you & all my friends on FB who help me get through the rough days.When I am having a "meltdown day" as I call them, my "puter" helps me get through them. Wishing you a day filled with "love & laughter"

  5. Thanks for writing. You know it is good days we laugh, and on bad days, I say, this too is my destiny. I'm no longer afraid of dying, but I am sad at what I will miss for my chidren's sake. Thank you everyone for your support. xoxo

  6. I left a message for the dr that is doing this study. I don't know when the next phase of it will be or anything, but I left my name and number, and my age on her voice mail. Please pray I hear back from her!