It's Not a Rumour

a rock and roll journey through life and Alzheimer's

The beginning – 2010

February 21, 2019
schyjer

 

In the beginning of 2010 I was noticing that Rick would forget things. I wanted him to visit a doctor but he didn’t think anything was wrong. It wasn’t that important until I thought that’s enough! This is not normal. I forced him to go to the neurologist. On July 8, 2010 they ordered an Magnetic Resonance Imaging (MRI) and he’s incredibly claustrophobic so he did a stand up MRI. This didn’t show the disease just an arachnid cyst that was there since birth.

From 2010 until 2014 I just dealt with Rick forgetfulness every day without having a clue of what was coming. I think that the doctor thought that it was just his Type 2 diabetes making him forgetful.

Do you know just one in four people with this disease gets diagnosed? It was estimated in 2014 that there are approximately 44 million people worldwide living with Alzheimer’s disease. By 2050 it is estimated there will be as many as 16 million Americans living with this disease. You could be next! What is causing this? Is it our nutrition? Is it just DNA? What is it? Every 66 seconds someone in the United States develops Alzheimer’s disease. And why don’t we have anything that can help? AHHHHHHH!

Since 2010, I have been on a mission to improve his memory.

Since 2014, I have been on a mission to cure him.

Since 2016, when he had a brain bleed from being on baby aspirin and fish oil and many supplements it has been a downward spiral.

When I talk to friends or some doctors they are in shock, Rick used to be a genius, everyone knew it. It took a long time to figure out that he had Alzheimer’s at such a young age. After I figured it out, I spent a lot of money on anything and everything to help him. Why? Is it worth it? Some people say a lot of vitamins it is just expensive pee. His nutritionist always says it is better to get all of his vitamins from the food that he eats.

Life is complicated. I keep working to make money to pay the bills. I am already in debt on credit cards… I need to pay a caregiver and daycare and his insurance and our home expenses and it’s just so expensive. I pretty much do everything by myself. It’s not fair. I have heard of people going completely broke fighting this disease. I just don’t have the time to work more, cook, clean give Rick a shower, take my shower and pay the bills…pretty much everything. But Rick is the love of my life and in fact my whole life so I started trying everything to help him or prevent things from getting worse. I guess that I was in denial because I believed that I could fix him.

From 2010 to 2014 I noticed that Rick wasn’t the same as he used to be. I didn’t know how to help him. He was incredibly independent before and he was a man that could multitask. He was a Renaissance man, knew everything from Shakespeare to Ren and Stimpy. 

In 2014, I kept noticing that Rick wasn’t his old self. I finally said that we had to go to a different neurologist than he had been to before. I asked everybody that I knew to give me a reference and then my sister who works for a doctor who had Alzheimer’s referred me to a doctor in Santa Monica.

We had our first appointment with a different neurologist on 09/25/14. At that appointment he asked him to draw a clock, and he couldn’t. Other questions couldn’t be answered either. The doctor gave us the diagnosis of Alzheimer’s dementia. How is this possible? He was only 64 years old! This is too young to have Alzheimer’s disease! No I said, impossible! Thinking back, I don’t know why I didn’t realize that this would happen. Rick’s mother had Alzheimer’s in her eighties, his aunts, about the same age and his grandmother in her nineties. This inherited disease is occurring in this family a generation younger each decade. But most of the family members were women. But he had the gene. It is known as APOE4/4.

Do you or your friends have Alzheimer’s disease in your family histories? I suppose I was living in a dream. Because we had such a great relationship and we were so happy together. This is not fair, the love of my life can`t have Alzheimer’s. He doesn’t deserve it. I don’t deserve it. I was always the person who went along with all of Rick’s ideas and thoughts. He is the one who would make all the decisions and now I need to be the boss. I hate to be the boss. Where is my Rick?

After we received the actual diagnosis in 2014 we started the process of trying to slow the progression, trying to find a cure, and figure out a solution. I was sure that I would find something. I researched every article, every treatment, I spoke with everyone. Where are the answers? I am writing this blog in 2019 and I keep searching. There isn’t a day in my life that I don’t search every article, research google for new treatments, receive emails from clinical trials, and ask everyone that I know who finds anything to send it to me. Today I received something from a surgeon from Brazil. I will try anything. I am desperate! Please send me any trial, anything that worked for you? rschyjer@gmail.com. I will also write about everything that we’ve tried before.

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