Sep 052012
 
K_Murray_headshot

I was diagnosed with younger-onset Alzheimer’s disease in 2009 at the age of 56. Prior to my diagnosis, I was the senior vice president of operations for M&T Bank, overseeing hundreds of employees across the Maryland and Delaware regions.

I still run into those people — former employees or co-workers — at the grocery store or out at restaurants. I remember faces, but not always their names. Often, I notice that people make eye contact with me and then turn around the corner rather than say hello. Maybe they are just uncomfortable. Maybe they don’t know what to say.

There are times when my husband, Robert, and I are out and friends will ask him, “How is Kathy doing?” He will say to the person “Let’s go talk with her.” Most individuals don’t know what to say and it may be easier for them to avoid me.

I want people to know the truth about Alzheimer’s disease. That it’s not a mental disorder or “just a little memory loss.” It’s the most common form of dementia. And it’s a progressive disease.

I speak up and tell people about my diagnosis and take as much time as I need to educate them. I want them to have a better understanding of Alzheimer’s. I want them to know there is much more to the disease than the late stage. Someone with Alzheimer’s doesn’t have to be in a wheelchair or lying in a hospital bed; they can be like me, still able to travel and live life to the fullest. Maybe they are not at the top of their game, but they have found ways to adapt. Like me, someone with Alzheimer’s can still be functional and independent. I still have so much to contribute.

It’s not always easy to speak up about Alzheimer’s. Even now, several years after my diagnosis, it can be very difficult for me. 

Last week was Robert’s birthday. He received a card from friends that read something like, “At your age, we knew you wouldn’t remember we sent the same card last year!” Robert and I just sat and looked at each other.

Kathy Murray is living with Alzheimer's disease.This isn’t an issue about a level of education or intelligence. We’re fighting against popular culture. This is about awareness and education around this particular disease.

Keep talking openly about Alzheimer’s, and little by little, it will get easier. Sometimes you have to put yourself out there, and that’s not easy for everyone. Make sure your friends and family members are educated about the disease. They can speak up on your behalf, too.

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About the Blog Author: Kathy Murray is an alumna of the national Alzheimer’s Association Early-Stage Advisory Group (2011). She lives in Frankford, Del., with her husband, Robert. Kathy and Robert have two sons, Robbie and Bryan, and six grandchildren.

  22 Responses to “To Fight Stigma, I Speak Up”

  1. I am dealing with friends "moving away" from me. They don't call on the telephone like they used to, they don't chat and have fun with me, and they don't invite me to go on trips, etc., like they used to. People are pulling away from me instead of coming to help me, support me, have fun with me while I am still able.

    I am only 58 and following in my Dad's footsteps. His symptoms started when he was approximately 56 and mine did too. This past year, there has been drastic changes in my health. It breaks my heart that I'm going down the same road as my Dad and two Aunts, but I make the best of it and am being pro-active.

    I'm also really scared. Down the road I won't be able to take care of myself and it really scares me that someone else will be in total control of when I eat, get dressed, go someplace, etc. So, I'm making sure that it is people that I trust that will be there for me.

    Thanks for your story and it felt good to tell mine.

    Sincerely,

    Debbie
    Minnesota

    • I know how you may feel, and it scares me too! I want to keep my mind clear and to feel I am still in control of myself. My husband goes to ALZ meetings and I feel we are moving in different directions now. I had to relinquish my drivers license which sent me further into a feeling that I will never have the opportunity to have the freedoms I used to. I feel like I am at the end of a long journey of freedom, joy, friends, and opportunities and that now I will be downscaled from my own life!

    • Debbie, please consider joining Memory People on Facebook. And then find me.

  2. Ive been diagnosed with Lewy Body Dementia & i’m 50. Other people cant understand what we are going through. I’m going to look for a support group soon. Try to make each day the best it can be. Good luck- you are in my prayers.

    • I have an online support group for you. Several, actually. Support from other people saved my life. Email me at eisenbergjunkmail.com. (I don't know who gets that address — it's for junk mail, but I'll look for your note!) Or see if the mods will give you my 'real' email.)

  3. Well said Mrs. Murray. That is just how I feel as well. I am about 2 1/2 years into this journey of early onset Alzheimer’s. It is not something to be hidden away. We got sick. And if we, and others affected, do not speak up there will never be any effective treatments or better programs to assist caregivers.

  4. Thanks for your story. I really appreciated it. Is there any way I could chat with you personally? Or could you answer my question here? I wanted to ask how you knew it was Alzheimer's. I've read all about the warning signs but I know it's even harder to diagnose early-onset. My dad, his sister, his mom, and his mom's siblings all had Alzheimer's, so naturally I worry about it. I'm getting embarassingly terrible at remembering certain things, and it scares me. I just wanted to hear from someone who actually has early-onset Alzheimer's. Thanks.

  5. Amazing, what a positive attitude!! You are an inspiration to me!

  6. My sweet sweet dad passed away at age 63 in 1987 from this horrible horrible disease, it went clear to the end of the last stage. Back then there was no medication for this, the most horrible of diseases (in my mind). I pray for a cure.

  7. Lots of love from spain kathy

  8. Thank you Kathy, you are an inspiration. She was a might older than you, and she passed away last year, but there are two things I would like to share, she never hid from the disease; she would go up to people, mostly people she knew, but sometimes not and say Hi I think I should know you, but I have Alzheimer's so I don't remember your name. And the second thing is that my most often prayer as her caregiver wasn't help her through this disease, but let her know me when she dies, and that was the one prayer that was answered. She knew little else, but she did know her children. So I will pray that for you, knowing what will happen is a scary thing, there isn't anything we can do about that yet, someday though, but hopefully you will remember your children and of course your husband. I rambled to long. Prayers to you and all who are devastated by this horrible disease.

  9. Thoughts and prayers are with you and your family!!! My husband had Alzheimers but died from Congestive Heart Failure in Jan. 2008. He still knew us until he had a stroke. His Mother along with several of her sisters had the disease. I read and study everything I can find on Alzheimers. Thank you for doing this blog because it helps to understand more when it is your story of howit affects you daily. I pray a cure can be found in time to help you and so many others!!!

  10. Thanks a lot for sharing this for I undergone TIA lately which caused me Aphasia but I was able to recover in less than 24 hours and my doctor told me that the worst scenario of that is Alzheimer's if ever.

  11. I love your attitude, its the right attitude! My dad was diagnosed with Alzheimer's last year and I have only now realised that it certainly is not a mental condition, its been a learning experience for us all and an eye opener how wrong we understood Alzheimers.

  12. Thanks for sharing your story. In 2006 my wife who worked in health care was sent home and asked not to return to work until she had an MRI and had seen a neurologist. When we got the results we were devastated. At the age of 52 she was diagnosed with Alzheimer's disease. We found it useful to attend education sessions and for her to attend early memory loss groups and keep busy. I continue to attend caregiver groups which I find useful. One thing is for sure, each and every case of Alzheimer's disease is unique.

    I believe the general population think of Alzheimer's as memory loss and a minor inconvenience. Most don't realize that it is progressive disease and that as the brain deteriorates many of the day to day functions the used to be routine can no longer by completed by the person with the disease. Often they have visual and spatial difficulties, often speech is affected. For some the deterioration is quick, for others it progresses slowly overtime.

    I share your thoughts about those birthday cards, jokes you hear in TV programs and movies and sometimes from people you know. You feel the pain each and every time you hear it. I also have frustrations relative to insurance companies who continually send out medical forms to be filled in and signed by doctors. Folks the disease is progressive, sadly it does not get better. When you have ok'd some benefits due a diagnosis of Alzheimer's disease don't keep badgering the caregiver, God knows we are up to our necks in things to do.

    For friends, relatives and others just remember that we as caregivers need all the support we can get. Don't ask what can we do for you, just do it. Visit, talk, have us out for diner, give us a caregiver break from time to time.

  13. Hi Kathy and Robert: You can bet your life on this Aunt Agnes and Uncle Herb will never, ever snub you. I am so greatful you and your family can pull together on this journey. And share good times together. Love Always Aunt Agnes. Oh yes what a beautiful family.

  14. Thank you Kathy and Debbie. My 62 year old sister is just starting down this same path. It takes real courage for you to speak up and I want you to know how valuable it is for me to hear. It is just not the same thing as reading it in the "manual". Thanks, wishing you the best. Steve.

  15. Kathy, I also have MCI although mine is vascular. I used to live in Baltimore. I'd love to 'meet' you and invite you to meet my Alz friends. We have a secret Facebook support group for people just like you, for patients only. Contact me at my email address.

  16. Thank you so very much for sharing your stories you have no idea how you touched my heart and how much more hopeful I am! I will continue to do what I do and more just by reading your stories the role a caregiver plays in our loves one lives do make a big impact on them. I also attendes monthly meeting and I also want to say you do meet awesome caregivers who you can relate to that make your day run a lot smoother because they know first hand on what youre going through God bless you for being courageous to share your story and also your husband, family and the friends you do have

  17. Congratulations Kathy! your testimony was really helpful for me to understand what a person with Alzheimer’s feel. My mother was diagnosed with the disease about 5 years ago. Now she is 77 years old. At that time, she insisted that she might have the disease because the symptoms she felt. Since then, she always tells everybody that she has it, but she doesn’t say a word about her feelings. Sometimes, she complains, but that’s it. Actually, not only your words, but the others in this blog, helped me a lot. We live in Brazil and, also here, there is not much comprehension about the disease. Hope that in the near future, the cientists could find something really good for all of us!

  18. I know it must be difficult, I work with people who have Alzheimer’s but still intend to live positive lives. You are very correct – it’s all about adapting and I just want to thank you for sharing your experience with the disease with everyone. Human Beings are naturally afraid of what they don’t know/understand and with the insight of people like you, the reactions of people can be improved and changed. You are in my prayers x

  19. At the age of 54 my husband was diagnosed with Alzheimer's, as he got worse, our daughter stop calling and now 10 years later , we never see her. He doesn't remember her. It is so sad not having her support.

    Very few friends left. Do not know how this is going to end, all broken up inside.

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