I walked into a business meeting, began to introduce my business partner and couldn’t remember his name. This rattled me so; embarrassed me more. While interviewing a candidate for an engineering job, I started laughing uncontrollably; I had to excuse myself to stop the laugher. During travel for work in another cities; I suddenly couldn’t remember why and where I was. While in conversations, I would speak and forget what words to use. Constant yawning attacks consumed me during conversations. My brain felt like scrambled eggs with electrical currents running through it here and there. I never in a million years thought that I had Early Onset Alzheimer’s.
I’ve never been a super healthy person. I was thirty-nine years old when receiving my Type 1 diagnosis. My whole world changed! I had to change the way I ate and exercised. Counting every carbohydrate I put into my body would be a lifetime daily occurrence. Pricking my fingers about six to eight times a day. Injecting insulin into my stomach many times a day isn’t a choice, it’s to keep alive. I believe my paternal grandmother was diabetic; yet never treated herself with insulin. My nanny fought with her diet from the moment I was born until she passed away; she was legally blind too. When diagnosed with Alzheimer’s at age fifty, my reaction was quite different. I was shocked and scared. Shocked because nobody in my family had Alzheimer’s and scared because this disease doesn’t have a cure. It’s was like getting hit by a train! It’s like getting handed a slow death sentence. Tick tock.
Getting diagnosed with EOA was slow and complicated process. I have many cognitive impairments. I suffer from hemiplegic migraines. I was under the care of a Neurologist for my migraines; so, used Him for the Alzheimer’s and Cognitive problems as well. I also got a second opinion from another Neurologist. Then I was sent to The Memory Care Center at Kansas University. I had two very long cognitive test studies, two years apart; directly after this test, I was given the diagnosis. I attended several months of speech therapy. Right after my diagnosis, I began to think of life differently. I wasn’t sure how much time I had left before I couldn’t manage my thoughts or communicate the way I would like; I still don’t. I’m certainly appreciating my days, people, and places more! My doctors couldn’t answer questions regarding my near future; they claimed every case is unique. I kept thinking…there’s no cure, there’s no cure! At least with other diseases, you have chemo, insulin therapies, or other medications to help you through your path; not with EOA.
My mind already felt like static. I had to take frequent naps during the day. My aphasia got in the way of conversations and embarrassed me. Reading was becoming a problem because of my memory. I had to stop working.
Because Bob’s mother suffered with Alzheimer’s for many years, we unfortunately knew what to expect; it wasn’t pretty! We also volunteered weekly at a Memory Care Home; so, we were quite familiar with the different stages of this ugly disease. We stopped helping at the memory care home because it was too close to home figuratively!
Things raced through my head…Should I spend more time with my family and friends under the assumption that I don’t have much time left? When should I tell my family? Is it too early to explore my bucket list? Then I have to face reality, our funds won’t allow me to fulfill my bucket list. What can I do to slow the disease down and improve my brain function?
Bob and I told our daughters and grandkids about the diagnosis which was very hard; they were very supportive and calm; which I expected.
It’s 6 years later, the dust has settled a bit. My aphasia, memory and cognitive abilities are worse. I have finished several months of Speech Therapy which was useful. The therapy taught me how to exercise my brain, prioritize, organize my thoughts, use do-do lists and calendars, deal with my aphasia, and rest. My mind is very scattered. I still drive; however, I have to use a GPS or I get lost.
Due to a collection of my health problems, I stopped working. It was impossible for me to get through a work day physically and mentally.
My husband and I have tried to simplify our lives more and more along the way. We moved to a smaller town, into a smaller home. My days are quite uneventful. Depending on my energy level, I blog, read, clean, sometimes cook, walk depending on the weather and always nap. Life is pretty simple now; yet, at times I get completely overwhelmed by the smallest things. I’m so afraid of the disease I face in the future days.
I have a have things I do to try to keep my brain ticking daily; computer mind games, puzzles, and other exercising the speech therapist gave me. I read. I have started blogging. I exercise; not enough.
I feel an enormous guilt and sadness for my husband. I don’t want to be a burden to him or anyone else in my family. I don’t want to be his problem vs. wife. The fact is, my husband is now my caretaker and I hate the way this sounds. I hate that I need a caretaker!!! This is about the last thing I ever wanted! Bob is now having to remind me of everything and putting up with my paranoia, anxiety and doesn’t have the old Lisa.
I know my memory and cognitive abilities are getting worse. It’s getting harder for me to think logically. At times, I feel completely fine and more often, not so much, I feel lost! I feel as though I have lost myself! I have always been an independent woman; now, not so much. I hate the Aphasia; this symptom probably bothers me the most. Paranoia is something I struggle with.
Reading had always been one of my pass-times; it’s getting harder and harder for me to remember what I’ve read the day before which totally saddens and stresses me. I tried to use audio books; however, my memory fails me worse with these, more than books.