Early Onset Alzheimer's and Ageism

My name is Bobbie Joe. I was diagnosed when I was 42. I am now 45. I've had my fair share of health problems, but I never thought I would have Alzheimer's. I mean I knew it ran in my family something fierce, but I always thought it wouldn't happen to me.

My background

I was an athlete who used to pitch an 80 mph softball. I played with Lisa Fernandez the USA Olympic women's first softball fast-pitch player. I learned her change up. I used to think nothing bad was ever going to happen to me. Yeah, to only be a kid again. Well, that reality came and went pretty quick when I hit my 30's.

My other health conditions

I had my first stroke at 32. Then it just seemed to go down hill from there. Other health problems started popping up. I just couldn't figure out what the hell was going on. I was always an active person and healthy. Why was this happening to me? Then one day I woke up and couldn't get out of bed and then I was diagnosed with spinal stenosis and was having emergency surgery. Then I had my C3-C6 worked on and now I have titanium in my neck.

After that I was diagnosed with ankylosing spondylitis. I lived in a wheelchair for 12 years and was like come on, WTH. I was in my prime, I thought, and here I am in my 30's going into my 40's watching my kids grow up; watching their mother and not being able to do things with them. It was hell. However, my brain was still telling me I was in my 20's but my body felt like it was in my 80's.

Surgeries and medications

Then after all those surgeries they put you on medications that really are not good for you. I was on Oxycodone and morphine for 12 years. Yeah, not good. So during this time I started having teeth problems. I went to Western Dental in Merced, CA. and they did x-rays and told me I had some sort of infection. So they sent me to Dr. Guindi in Fresno, Ca. who did x-rays; he also said I had this infection. I said I want another opinion. He sent me to Wisdom Teeth Away in Fresno, Ca. They too said I had this infection. They told me that all my teeth needed to be removed. After all, these dentists told me the same thing, I didn't want to agree, but I really had no choice. So, I said yes.

I was promised beautiful dentures. Surgery day comes and goes and the dentures that I was promised never happened. I took one look after the Dr. who ground them down before shoving them into my mouth and handing me a mirror said, "look don't they look beautiful". Immediately I started crying and knew there was something terribly wrong!! They didn't look like my teeth at all and they didn't fit. I had to go back several times so Dr. Guindi could attempt to grind them down to fit. It never worked because they never fit to begin with. So, I quit going and I could never wear them again.

Being diagnosed with early onset Alzheimer's disease

During this time I was diagnosed with early onset Alzheimer's disease. This was later in 2018 by Dr. Diana Hylton. She basically did a bunch of tests including a genetic test and it came out positive that I carried the gene.

When I got the results I was shocked by the way she told me and how she lacked compassion when she told my husband and I. She said, "yes, Bobbie you have early onset Alzheimer's I am sorry". I am giving you about 10 years or so to live, and I kid you not, that was about it. She didn't give me any information....nothing. I was devastated. I was crying, very upset. I went home and cried myself to sleep that night. I think my husband did the same thing. So not only am I dealing with no teeth, now I dealing with this diagnosis.

So, a few months start going by and I'm getting depressed. I go to my primary doctor in Mariposa, Ca. I am telling her about all of my problems. I can't eat and I was just diagnosed with Alzheimer's and now I'm losing weight. I'm only 42 I tell her. She immediately says, "oh I don't think you have Alzheimer's". I was like, what? She say's, "I think it's those meds you are on. The Oxycodone and morphine you've been on for so long". She was a holistic doctor and she didn't want me taking those. Now, mind you. I never misused my medications. I took them as prescribed. I had been on those same meds for 12 years. I had never had these problems before my teeth were removed. I kept trying to tell her no, that's not the issue. I take those because I have A.S. and I'm in actual pain. I'm not a junkie.

So, a couple of more months go by and I continue to go to my primary doctor in Mariposa and she continues to argue with me about taking those meds. So, in July of 2019 she takes me off of those meds without talking to the prescribing doctor first, cold turkey because she feels that not only do I not have Alzheimer's, but that it is also the reason I am losing weight.

So, after I stopped taking the Oxycodone and morphine I become extremely ill. I lose over 100 lbs in 3 months. I was so sick that I was puking and going to the bathroom at the same time and on October 13, 2019 I yelled for my husband to call 911 because I knew I was dying. The ambulance arrived at our house. The paramedics got me in the ambulance and that's the last thing I remember. I died that day from a sudden cardiac arrest for 18 minutes and was placed in a coma for 4 days. All because my damn doctor wouldn't listen to me that I had Alzheimer's and she took me off meds cold turkey!

Today

Now, I am happy to say, I no longer take those meds. Not because I think they are bad for all people. Just because I choose not to. I now take CBD which works just as good for me. The problems I am having now though are I am still having problems with getting doctors to understand that Alzheimer's disease isn't just about people who are old!!!

Ageism

Ageism is very real and people my age are suffering just like the elderly and sometimes even more so because we can't get the proper care because we can't get people to listen to us!!! I died because of this very reason and I've been fighting my way back ever since.

The Reason I am sharing this story is because I have been writing to our governor here in California ever since I could. I have been writing our senators our President our vice president, the news stations and my local news papers and no one has returned my calls because they see my pictures and think I'm full of shit!!! I'm so sick of this ageism its ridiculous!!!

Alzheimer's is much more than just memory loss. I have good days and very bad days. I have mood swings. I get lost in my own home. I space out and when my brain used to be filled with busy thoughts sometimes now it's just blank. That's freaking scary to me, now!!! I've been trying and trying to talk about this for a long time.

My frustration

I'm getting frustrated that no one wants to listen!!! I would love to be the new face of Alzheimer's. I have a long family history of this disease. I feel horrible for my husband and children. It's not just about me. They are going through this with a double whammy. My mother in law also has this cruel disease!!! I would love for someone to reach out to me. It's time we start talking about real issues!!! It's time we expose ageism with Alzheimers!!!