EO at 50

kennethh

Hi All

Two years ago I was diagnosed with EO. I am now 52 years old and really battling with this. I just can't accept the fact that this has happened to me. The frustration and anger is all encompassing. My wife has been the most supportive, but I can't stop feeling the guilt and shame of what this disease has robbed me of. I was once a productive member of society, now I am a mere husk of my former self. These past two years have been challenging for me in that I had to surrender everything that made me independent , driver's license, banking accounts, my job. My so called friends have literally run to the hills, avoiding me like I was a plague.

It is with hope that I am here, desperately looking for those in a similar situation who will understand.

Iris L.

Welcome Kenneth. Getting such a diagnosis is devastating. Did you get a second opinion? Were you offered any medication? There are steps you can take that may prolong the early stages.

Iris

beachbum

I am so sorry you are here. My DH 57 diagnosed in March, although I believe it goes back at least 5 years. He is about to quit work and driving. I handle all finances and decisions. This is hard for him but he knows I have his best interest as I am sure your wife does. I just didn’t want you to think you were alone.

VeronicaHAlvarez

Hi Ken, I'm sorry to hear about your diagnosis, and you're hurt and angry. I understand I feel the same way at 54; I have been diagnosed with EO for the last 6mo but have been living with symptoms for the previous two years. I have not told anyone except my sister, who I live with. No one at work knows, and I am trying to make it to 57 when I can retire with my pension. My short-term memory is gone, but I work on it every day. That is what my doctor told me. I work with numbers, and I love my job; it is a matter of time before they figure out something is wrong. What I am most afraid of is losing my independence and my dignity. It runs in my family on my mother's side. Yes, even family will run from you, and it is painful. But if your wife is there for you, be there for her because she is going to suffer with you, too. Ken, now is the time to do all the things you want to do with your wife and family before you can't with them. Your gift to them will be those memories. Do not let this illness rob you of the happiness you can have. You make your happiness. I wish you well and will pray for you.

kennethh

Hi Iris, beachbum and Veronica

Thank you all again for the warmth and understanding.

Iris in 2017 I went for testing as I felt something was off, but I just could not put my finger on what it was. The MRI did pick up cerebral atrophy. The report that came advised for further investigations to be done, which I complied with whole heatedly. I made an appointment with a neurosurgeon and went. This is when things really got interesting for me. At the consultation, the neurosurgeon held up the scans and then promptly threw them aside and informed me that I did not have anything wrong with me. He had not even looked at the scans nor the report, yet made this diagnosis. After a brief moment of awkwardness he asked if I smoked cannabis!!! Now in my mind I am thinking what relevance does such a question have regarding my situation? My answer was no, he then took out his prescription pad and stressed that I start taking cannabis. He wrote the prescription and handed it to me. You can only imagine what I was feeling at this point. I got up and walked out. After this episode I lost all faith in the medical profession. Roll on to 2022 after a bad incident while driving, my wife took me the emergency rooms where I was admitted. 2.5 weeks later and after having nearly every medical exam done, including a 4 hour neurophysiology's test, it was determined beyond a shadow of a doubt the EO was the culprit. It just amazes me that there are certain Doctors out there who in my humble opinion should not be practicing, yet are.

Thank you all once again for the love and support.

Ken

Iris L.

Ken, just the process of undergoing an evaluation for memory loss can be problematic and demeaning. That's why it is a good idea to seek out doctors who regularly work in this area, and who are knowledgeable and understanding. I have some horrible stories of my own that I could tell. I finally found a great neurologist. He offered me medication which is helping my memory and my speech.

Iris

kennethh

Thanks Iris, you're correct in saying that the right doctors are those that deal with this day in and day out. As for medication, I was on quite a lot. Unfortunately over time I felt more detached than before taking them. I know it was not the correct thing to do, but I took myself off them. Needless to say the depression is back with a vengeance as too are the other "glitches" some the same, some new.

Iris L.

Kenneth, it can be a challenge to make a distinction between major depression and dementia. In cases like yours, aggressive treatment of major depression with pharmaceuticals and psychotherapy over a period of at least six weeks is indicated. It takes four to six weeks for blood levels to rise to therapeutic levels for most antidepressants. Making the diagnosis of dementia is done after ruling out other possible causes of memory loss and other symptoms. You mention a neurosurgeon who prescribed cannabis. Were you evaluated by a dementia-specialist neurologist while you were hospitalized for two weeks? What is your plan now, since you are still having "glitches"?

Iris

quinntaylor6

I just failed the clock test and ended diagnosed with dementia. There is a new drug now that can prevent dementia if caught early enough. If I fail the next part of my testing and am diagnosed with dementia for sure, I'm going to get this drug from a doctor I know who has it, if she'll take me on. Subsequently, I'm also getting tested soon for other Neuro disorders such as brain tumor, etc. I'm very worried, because I don't have anyone who could look after me when I get worse, so I'm planning to set home health care and an advanced directive when, or if, my condition worsens.