I reached Stage 4

“I have reached Stage 4” by James Hamilton

I spend WAY too much time in emergency rooms in various hospitals. Something is wrong, I can tell, but I keep getting diagnosed with a variety of issues: Type 2 diabetes, circulation issues, cholesterol problems, high blood pressure, anxiety, depression and other crap that I have no idea where this stuff is coming from. 

My friends encourage me to see doctors. They know something is wrong. My family encourages me to seek psychiatric help. They know something is wrong and they are worried because I seem to rely on emergency room visits. 

I eat healthy. I exercise at least 4 days per week. I could stand to lose a few pounds. I weigh @ 230 lbs. at 5’ 11” and my “ideal” body weight is 185 lbs. I’d be happy at 200 lbs. I go for walks almost daily. I work as a teacher at a local high school, but the challenge of teaching is becoming increasingly difficult. But I’m not sure why. I do crossword puzzles daily and play online brain games because I enjoy them (at this point, I didn’t think I needed them, I’ve just always been a brain game nerd). 

Finally, after being told to go see my general practioner by many ER doctors, I set an appointment with my general practioner. I feel silly about it, but I prepare a list of questions to ask because my memory has been “slipping” lately. Questions like: 

• What do you think is causing my recent memory problems?

• Do you think my symptoms are due to circulation problems in my brain?

• I’ve been in the hospital a lot lately. What tests do I needbecause I have a bunch of symptoms, but I don’t seem to be getting any better?

• Can you help me get a plan in place to work with all my doctors? You should be the “hub” of all the information from my various hospital visits and doctors. 

• How do all the recent diagnosis affect how I manage my other health conditions?

My GP recommended I undergo some tests. Most of them were repeats from my hospital visits, but I could tell he was looking for something specific. 

He ordered tests for: 

• Blood pressure

• Cholesterol

• Blood sugar

• Tests to rule out other potential causes of memory loss and confusion, such as:

• Thyroid disorders

• Vitamin deficiencies

He reviewed my overall neurological health by testing: 

• Reflexes

• Muscle tone and strength, and how strength on one side of your body compares with the other side

• Ability to get up from a chair and walk across the room

• Sense of touch and sight

• Coordination

• Balance

My general practioner asked me a series of questions about my history, even though he had most of the information on file. A lot of these questions were regarding new symptoms and history. 

1. What kinds of thinking problems and mental lapses are you having? When did you first notice them?

2. Are they steadily getting worse, or are they sometimes better and sometimes worse? Have they suddenly gotten worse?

3. Has anyone close to you expressed concern about your thinking and reasoning?

4. Have you started having problems with any long-standing activities or hobbies?

5. Do you feel any sadder or more anxious than usual?

6. Have you gotten lost lately on a driving route or in a situation that's usually familiar to you?

7. Have you noticed any changes in the way you react to people or events?

8. Do you have any change in your energy level?

9. Are you currently being treated for high blood pressure, high cholesterol, diabetes, heart disease or stroke? Have you been treated for any of these in the past?

10. What medications, vitamins or supplements are you taking?

11. Do you drink alcohol or smoke? How much?

12. Have you noticed any trembling or trouble walking?

13. Are you having any trouble remembering your medical appointments or when to take your medication?

14. Have you had your hearing and vision tested recently?

15. Did anyone else in your family ever have trouble with thinking or remembering things as they got older? Was anyone ever diagnosed with Alzheimer's disease or dementia?

WAIT A MINUTE! “Dementia”? What the heck? I’m 57 years old and have a pretty high I.Q. I can take care of myself and have a fairly healthy lifestyle. What makes you ask about dementia??

Then, my doctor ordered more detailed tests: 

Brain imaging

Images of your brain to pinpoint visible abnormalities caused by strokes, blood vessel diseases, tumors or trauma that may cause changes in thinking and reasoning. A brain-imaging study can help your doctor zero in on more likely causes for your symptoms and rule out other causes.

Brain-imaging procedures your doctor may recommend helpingdiagnose vascular dementia include:

• Computerized tomography (CT) scan. For a CT scan, you'll lie on a narrow table that slides into a small chamber. X-rays pass through your body from various angles, and a computer uses this information to create detailed cross-sectional images (slices) of your brain.

A CT scan can provide information about your brain's structure; tell whether any regions show shrinkage; and detect evidence of strokes, ministrokes (transient ischemic attacks), blood vessel changes or tumors. Sometimes you'll receive an intravenous (IV) injection of a contrast agent that will help highlight certain brain tissues.

• Magnetic resonance imaging (MRI). An MRI uses radio waves and a strong magnetic field to produce detailed images of your brain. You lie on a narrow table that slides into a tube-shaped MRI machine, which makes loud banging noises while it produces images.

MRIs are painless, but some people feel claustrophobic inside the machine and are disturbed by the noise. MRIs are generally the preferred imaging test because MRI can provide even more detail than CT scans about strokes, ministrokes and blood vessel abnormalities.

Carotid ultrasound

This procedure uses high-frequency sound waves to determine whether your carotid arteries — which run up through either side of your neck to supply blood to the brain — show signs of narrowing as a result of plaque deposits or structural problems. Your test may include a Doppler ultrasound, which shows the movement of blood through your arteries in addition to structural features.

Neuropsychological tests

This type of exam assesses your ability to:

• Speak, write and understand language

• Work with numbers

• Learn and remember information

• Develop a plan of attack and solve a problem

• Respond effectively to hypothetical situations

It took weeks for all of the test results to come back in and for me to be able to see my GP for a follow-up appointment. 

I was scared out of my mind because I knew the results were not going well. 

Then, 2 doctors in the hospital explained to me the results of all the testing. “You have progressive vascular dementia. There is no cure”. 

I am increasingly forgetful. I forget things I’ve already said and things I need to do. Finding the right words has become a struggle. I’m afraid I won’t be able to work if this keeps up.

​Family and friends are beginning to notice that I have declining mental capabilities. Recent events and how to do certain tasks elude me.  I am beginning to have a difficult time expressing my thoughts. I rely on “my paper” with my detailed information on a daily basis. I rely on checklists that I created and have posted throughout my apartment: personal hygiene, the kitchen safety, making sure the water faucets are off, etc. 

Even with the checklists, I keep finding stuff in the wrong places in my apartment. Putting stuff in the refrigerator or oven seem to be my favorite spots. My microwave oven caught on fire and I have no idea what I did wrong, but I was able to put the fire out and throw the thing in the dumpster. I would be extremely embarrassed if someone saw the way I have to live now, so I don’t allow anyone to come to my apartment. My landlord has figured out that I need additional reminders to pay the rent. Bill collectors call me all the time or send me emails telling me I’m past due. I’ve started paying bills when a company says they are going to cut off service. 

My mood is not good. Then again, I just had 2 doctors and a psychiatrist tell me I’m going to die from lack of blood flow to my brain and that my condition will rapidly decline. No wonder I’m irritated! But little things really make me mad. I threw a container of hummus across the den because the salsa in the middle of the hummus was smeared really strangely. Afterwards, I realized that was a pretty stupid move. Especially while I was cleaning hummus out of my carpet. 

I can’t sleep very long. Naps are great but sleeping 8 hours overnight is a thing of the past. I’ve caught myself, on more than one occasion, walking around outside in the middle of the night. No idea where I was going or why I was outside. 

I started doing research about dementia, when I can, and decided to start writing a book about this journey. I have always found writing to be relaxing and I am enough of a dork that I really enjoy doing research. Plus, writing and doing research aides in denial of the disease.