Here is a great article that San Diego Channel 4 had on their Website:
How one woman came to terms with Alzheimer’s through blogging
Updated: Aug 23, 2012 10:21 AM PDT
Kris Bakowski was no stranger to long, exhausting days. As the director of a busy concert theater in Athens, Ga., she handled everything from booking shows to stage and technical details, to working with the stars directly. Her days were full of complicated details from start to finish.
“I worked all the events and on most show days I would work from 6 a.m. to 2 a.m.,” she recalls. “It was very common to work 10 or 14 days straight before getting a day off. Needless to say, I was overworked and over-tired.”
Over time, she started forgetting how to do things that had been easy for her for years.
“Simple things like routine work on my computer. I would just stare at a blank screen and not remember how to retrieve a document or open an email,” she says. “My math skills were just not there anymore. A big part of my job was to sit down with an entertainer or their management team at the end of the show and ‘settle out.’ We would go through all the box office receipts and expenses paid out, and I would write them a check for the difference.
“In many instances we were talking about hundreds of thousands of dollars and I found myself having to call my husband at one in the morning asking for help with the math before I went in to meet with my clients. Many times it was a matter of just putting the numbers in a spreadsheet but I couldn’t even do that.
“Then I started getting places and didn’t know how I had gotten there — that scared me and that led me to the doctor,” she recalls. “My primary physician sent me to a neurologist and eight months later I had my diagnosis.”
At age 46, Kris was told she had Alzheimer’s disease, a condition that normally doesn’t develop until decades later in life.
Alzheimer’s is an incurable, progressive brain disease that slowly destroys memory and thinking skills. It eventually makes it difficult to carry out the simplest tasks. In most people with Alzheimer’s, symptoms first appear after age 60. Its roots are largely unknown, although family history is a strong indicator.
Now, at age 57 — 11 years after she was diagnosed — Kris has become a strong advocate for the Alzheimer’s Association. She speaks on a nationwide level and talks with health care providers, gerontology specialists and others living with early onset Alzheimer’s. Her condition forced her to retire from her demanding career in 2004.
Married for 32 years to husband Ralph, Kris has a son, Alan, 28. He and his wife reside in nearby Atlanta, where he practices law. There is no history of Alzheimer’s in Kris’ family.
Kris has chronicled her life with the disease in an online journal that Alan set up for her shortly after she was diagnosed. Her writings are frank and open:
“Yesterday was not a good day. I couldn’t remember my cat’s name. I have found that watching movies or reading books is something I don’t do well. I can’t keep up with the story line of the movies and I can’t remember what I’ve read from page to page It’s frustrating.”
– Excerpt from Kris’ blog, Sunday, Feb. 22, 2004
We asked Kris to describe her journey with Alzheimer’s in her own words. Here is part of her story.
What are some of the ways life has changed in the 11 years since you were diagnosed with Alzheimer’s?
I live in a much slower-paced world now. I’m not constantly on the run, trying to juggle a lot of different things. I have to be much more focused and try not to get distracted.
I like to think things haven’t changed much and many people say that they can’t really see much of a difference. But they don’t see me as often as they used to or spend as much time with me as they used to.
However, over the years, when I found that I couldn’t do something, I tried to figure out a different way to do it or just accept the fact that I could no longer do something.
It’s difficult for me to be in crowds and noisy places so I am not as social as I used to be. I still try to visit friends but our outings are much more casual, usually shorter and usually in the early morning — meeting for coffee rather than a day out shopping.
Every day is different. I have good days and bad days. Not knowing when I’m going to have a bad day is frustrating as many times there are things I want to do but can’t — so we have to be flexible. My family and friends know that and adjust pretty well. They don’t take it personally if I have to back out of something at the last minute.
I have had to learn to pace myself. This disease makes you extremely tired — not physically but mentally. You have to focus so much more to do simple things that it is exhausting. I have to plan an afternoon naptime or by evening it is almost impossible to carry on a conversation. My mornings are much better as I am rested. My friends say I “create mornings” when I take my nap as I do so much better after resting. You find what helps you and you do it.
Were you stunned by the diagnosis?
I wasn’t stunned — I was actually relieved. My family and I had a pretty good idea it might be Alzheimer’s (even at my young age) but I was relieved to know what I was up against. Even though I knew there was no cure and it was a terminal illness — I knew what it was.
My family reacted much differently. My son likened it to his mother being on death row and being innocent of her crime. My husband realized I would be fading away and not the person he married. But my son also said to us, we needed to treat this as an obstacle in our lives — not the end of our lives. We would deal with it and figure out a plan for now. That’s when I turned to the Alzheimer’s Association and asked for their help. I knew I could not sit idly by and do nothing. They gave me a voice to share my experience, which has led to my advocacy work.
Can you remember much of your busy life before Alzheimer’s?
I can remember a lot about my hectic days at the theater. My office at home has photos of me with many of the stars that came to our theater. It brings back lots of memories. People ask me if I miss my job and I instantly say no. I thought I would — but I know there is absolutely no way I could do it now, so I don’t miss it.
My son fondly remembers lots of the events that I used to produce, because many times he was “my helper”. He reminds me of lots of things I used to do.
It sounds like you had a wonderful career in journalism and event marketing.
I did have a great career. In college and out I was a television news reporter in the Midwest. I then went into advertising and worked for many years as an account executive for an ad agency. I traveled a lot and worked all the time. After I married and moved south, I became involved in special events for the city and organized festivals, art shows and parades. I then moved on to the theater and special event marketing. It was a great time and I got to spend it with some great people. I have many young people that worked for me years ago that still stay in touch with me and I’m so proud of what they have become.
Are there certain things you simply cannot or will not do anymore?
I cannot make change (there’s that math thing again!). It is so frustrating. But I can still use my plastic charge cards.
I cannot function in noisy environments. I carry earplugs with me all the time to help try to cut the noise down. It’s like my brain cannot filter the noise.
When I travel and find myself having to cross a street — a little panic attack goes off inside me. I think the problem is there are too many conflicting signals attacking my brain at once that confuses me. I’m looking at the traffic light and I’m seeing green or red, then I’m seeing the crosswalk sign and they are all different, I’m seeing cars whiz by and other people crossing at all different times. So my brain is on overload from all these signals and I can’t keep them straight. So, I try to avoid having to the cross the street.
Have you seen any meaningful advances in Alzheimer’s research?
I know a lot is out there being done, but it is such a slow process that I’m not sure in my lifetime there will be a cure. The federal government recently enacted into law the National Alzheimer’s Project Act (NAPA). This act is aimed at making Alzheimer’s a national priority and to find a cure by 2025. It’s the closest we have come to publicly acknowledging Alzheimer’s and its impact on our nation. We need the wheels to turn faster on studies, clinical trials and research. Since my diagnosis I haven’t seen many advances. Other countries around the world are also working on new medicines and therapies. Many things are showing promise — but when we will see them, I don’t know.
In your early blogs, you noted that doctors don’t really know what it’s like, saying things such as, “You look pretty good.” How does that make you feel, and has that gotten any better through the years?
Unfortunately, I haven’t personally seen this getting better. Others I have talked to also agree. However, right now there is no incentive for the doctors to do much more than hand you a prescription and tell you to come back in six months. There is another piece of legislation that I hope gets passed called HOPE (Health Outcomes, Planning and Education for Alzheimer’s Act). This law would mandate that doctors or someone trained on their staff would counsel you, families and caregivers on important information about Alzheimer’s and make your diagnosis a permanent part of your medical records. The physicians would get compensated for their time to do this. The diagnosis as part of your permanent medical record is important if you are being treated by more than one physician so that everyone is on the same page with your care.
You talk a lot about not wanting to be a burden on your family.
I have always felt guilty about this disease. Guilty from the standpoint that I have the easy part — my family has the hard part. They are the ones that are going to have to care for me — when I see a mother’s job as caring for her children. I realize that others with diseases probably feel the same way, but it’s a guilt I feel and there isn’t anything I can do to shake it.
Do you want to share any anecdotes about situations you’ve found yourself in?
I laugh at myself a lot. And my friends and family laugh with me. I use the wrong word, I can’t think of a word or I can’t finish my sentences. It’s like charades — everyone starts to guess what I’m trying to say and it doesn’t help — but it becomes funny sometimes. Sometimes I mess with my family by saying I forgot something when I didn’t and they are not sure if I am pulling their leg or not.
Since I have a hard time making change in a store, if I don’t use plastic, I usually just hand the clerk a $20 bill so I don’t have to make change. As a result, I have lots of coin change and a lot of ones. I always am telling people I have lots of ones if they need change or that I am on my way to a strip club! That usually gets their attention.
When I play golf sometimes I forget how many shots I’ve taken and of course, I try to use that to my advantage — because no one else is counting either.
When I am in a crowd I start to panic. It is important for me to hold on to someone — I feel safer. So, it is kind of nice when I’m out with my 28-year-old son and he will hold my hand and help me maneuver the crowds. It’s the start of the role reversal I know, but it is comforting to me.
Has your blogging and writing helped you deal with this condition?
The blog has been therapy for me. But most of all, it helps my family and my friends know what I am going through. My family used to call me and ask me how I was doing and I would just say “fine” because it was hard to explain. So, by writing it down and trying to explain in my blog it helps them understand. I have been surprised that many people that I did not know have reached out to me via the blog. Some with the disease who didn’t know where to turn and started searching the Internet for more information and others that were caregivers needing more information to understand what their loved ones are going through.
The other thing that the blog has hopefully accomplished is bringing out the perspective that just because someone was diagnosed with Alzheimer’s, it doesn’t really make them a lesser person. I was shocked by the reaction from some friends after my diagnosis. They didn’t know how to talk to me, they avoided me and all of a sudden I was a different person to them. It was like they just saw a big “A” on my forehead and thought I could no longer think for myself. I realize in the later stages it will be hard to communicate, but for now I am still able to talk and have some thoughts of my own. It was important to me to get this message out and as a result I started speaking to groups locally, statewide and eventually to a national audience. I feel as if I have to speak for those that can no longer speak because of this disease. For as long as people will listen, I want to be able to share my story — so others can be helped. But it isn’t about me it’s about this disease and the need for education that will also go a long way to help raise dollars for research and to find a cure.
It is getting harder to put my words in writing… so I have lapses in my blog. I don’t like that but it is what it is.
Does your advocacy work give you hope for the future?
It does. At least I feel like I am making a difference as I have seen some legislation change. I wish I could do more to speed up funding for research and the research itself. We need more people to speak up and I hope by doing that myself that others will see that and feel good about standing up themselves.