As I did way back yonder, from time to time, I like to feature a guest and this time it's someone who was diagnosed in her 40's. Her name is Kris Bakowski, and if you're a patient or caregiver, I invite you to read her blog as well as this one.
Additionally, if you as a patient or caregiver, want to take a shot at these questions, please feel free. It's all information and that's what this blog's about.
There was one other person I wanted to feature, but after I left a message, I haven't heard back, so if you're out there, please get in touch, thanks.
Since being diagnosed, what has been the most difficult of your symptoms to deal with and have you begun experiencing different/additional ones since then?
Answer: I have several symptoms that bother me a great deal. The most obvious one to me is the problem with noise. I have a very hard time concentrating in a noisy environment. Restaurants, airports and places like Wal-Mart have way too much stimulus for me. I wear earplugs pretty regularly. My husband is retired and he likes to have the tv set or radio on all the time. He resorts to wearing headphones much of the time because he knows how the noise bothers me. Another problem I have is making change in a store. I get so frustrated. I usually just hand them my credit card rather than dealing with the humiliation it brings me to not be able to make simple change. Symptoms come up all the time, but you have to deal with them the best you can.
Have you noticed a change in your gait, for instance?
Answer: I have issues with balance. Being a rather athletic person this has bothered me since I have a problem playing tennis which I used to love to do. My depth perception has also been affected and makes it difficult for me to drive at night and sometimes stairs can be an issue for me.
Are you still active as a journalist, as a consultant, maybe?
I try to stay active writing buy many times it is difficult for me to write what I’m thinking. I know exactly what I want to say, I just can’t get the words from my brain to the paper. It’s very frustrating. I also have found that words that sound the same but are spelled differently give me a problem (i.e. meat and meet). I know that sometimes I write them, and I know I’m not using the correct word, but I can’t figure out the correct word. I know I have left my husband notes asking him to take the “meet” out of the freezer for dinner. I knew it was wrong but couldn’t find the correct word. Some days when I write on my blog, I have to ask someone to proof read it before publishing it.
Have you taken part in any drug trials?
No drug trials. I tried a couple of times, but was turned down because of my age. I am told that there are not enough younger on-set people to put in trials to make them work I am hoping that with more and more people getting diagnosed earlier this will change.
Out of all the experimental drug studies being done, which one(s) do you consider the most promising?
There are so many things out there being worked on I would be hard pressed to come up with any one. Obviously, I am looking for ones that actually treat the disease to slow it or stop it, than ones that treat the symptoms. But, anything is better than nothing. It seems like there is much more being done in Europe as the approval process is faster there, but I think I may just hear more about what is being done overseas than here.
Describe a day in your life.
My day has to be pretty structured. I try starting out each day by going to the gym or getting some type of physical activity. I play golf once a week although my low concentration levels hurt my game – but it is exercise. Early in the morning is the time for me to run errands if need be since morning is my best time of the day. It is because I am rested at that point. If I go to late in the day to run errands or do things outside of the house, it is difficult because of the increased number of people in the stores and on the roads which plays into my noise problem (as well as concentration). Late morning and afternoon I try to do things around the house and then I rest. I try to nap most days or at least have a quiet time. My friends say this give me an opportunity to “create mornings” since once I’m rested I do better. I usually prepare dinner but if I haven’t rested it is much more difficult for me to do. Evenings are extremely quiet in our house. I very seldom watch television as it is difficult to follow the plot. I try reading simple things such as magazines and try to work some simple puzzles.
I read in your blog that you’re a very athletic person. Has that changed through the years.
Yes, this certainly has changed in what I do. I still try to work out or walk every day – they say what is good for your heart is good for your brain. And, I must say that when I exercise that I do feel better “mind wise” if that makes sense. I recently had my knee replaced and was not doing the types of exercises I was used to and I really noticed a difference in my mental health. I can’t play tennis as I mentioned before. I love to ice skate and even though we live in the south I do get to skate occasionally. So, I try to stay active. I enjoy watching sports as well and will try to go to as many events as I feel comfortable doing.
What’s on your bucket list?
I have lots of things on my “bucket list” but most of them deal with experiences with my friends and family. Hopefully, they will be able to remember these experiences long after I will. One of my dreams all my life has been to go to Australia and it looks as if I will be doing that this fall.
From reading your blog, it sounds like you have a lot of energy. For me, it’s a case of “I don’t know how much “good” time I have left, so I’d better get busy!” How about you?
I probably feel the same way about this. However, I have always been a very busy person and if you ask my friends and family if I am as active as I used to be the answer is definitely no. I like to stay busy but I get so tired (more mentally tired than physically) that it just gets to be too hard. I really have to pace myself. If I have a busy day one day, I know that the next day I need to relax a little. Relaxing was never a word in my vocabulary before so it is something I am having to get used to. Knowing your limits is a good thing.
Do you play any brain games? Which ones?
I’ve recently started doing logic puzzles. I never used to be able to do them but wanted to give my brain a challenge. I still have a hard time doing them, but I try. I do other puzzles and play games online. However, I could never play the types of games that you play on line because they are much too complicated for my brain to wrap around! After I was first diagnosed I got a gameboy and will still play games on that occasionally for something different. But I just can’t play those other complicated on-line games.
Do you “compensate”?
I compensate for my Alzheimer’s every day. I didn’t realize how much I did it until a friend of mine started asking me some questions regarding my every day life. I realize that a lot of my “changes” have taken place gradually and they are now “normal” to me so they don’t seem like I’m compensating any longer. When I find I can’t do something I’ve come to accept it or come up with another way. For example, I can’t go to the grocery store after about 10:00 a.m. because of the noise. So, I either go early, ask my husband to go or ask him to come with me. I adjust all day long. I realize that I have a problem crossing the street by myself. When you think about it, nowadays, you really don’t cross the street that much unless you live in a big city. You usually drive to the grocery store’s parking lot, or pull right in front of a store. But, when I do have the occasion to cross the street, I try to have someone with me. I don’t necessarily trust those walking along side me (if I don’t know them) because they may walk at the wrong time and I wouldn’t have enough time to get across My problem crossing the street comes from too many visual signs at the same time. I see the crosswalk sign and the street light at the same time. When one is green I get confused as to whether that is for me or the cars. It all becomes very confusing. Simple things can become the hardest things to do sometimes. Some days I’m just not having a “good day” so I may have to cancel plans with friends or just take a rest and do something tomorrow instead of today. “ Normal ” has a new meaning every day.
Thanks, Kris, for that very candid interview, I'd also like to add that Kris is one of our very outspoken advocates and was with us at the Advocates Forum in Washington DC. She never misses an opportunity to speak on behalf of all of us and is always the first in line to help. Dondra and I are proud to know and work with her.