I am a firm believer that everyone plays a role in determing their own "fate." However, I have never imagined experiencing someone close to me having to pick their own fate in every literal sense of the word.
My mother has Huntington's disease: a devastating, hereditary, degenerative brain disorder for which there is, at present,
no effective treatment or cure. HD slowly diminishes the affected individual's ability to walk, talk and reason. Eventually, the person with HD becomes totally dependent upon others for his or her care. Huntington's Disease profoundly affects the lives of entire families -- emotionally, socially and economically. Once symptoms begin, there is no reversal and the disease will eventually
kill.In the past, year my mom has moved in with my sister in East Tennessee so she can have daily assitance. Thankfully, she is still functioning on her own but she can no longer drive or work and because of her jerky movements; it is unsafe for her to be alone for long periods of time.
She is only 46.
The CallLast night, my sister called me to update me on the most recent doctor's appointment. This is a normal routine as I like to know how experimental treatments are going.
This call was different as it brought devestating news. My mom has high cholestral and low potassium. Neither of which seems very dangerous; however, the combination for my mother is deadly:
- Low potassium levels can cause a heart attack.
- The medicine that raises her potassium must be taken with her high cholestral medicine.
- The high cholestral medicine intesifies and speeds up the arrival of Huntington's disease symptoms.
- Without the cholestral and potassium medicine, my mom could pass away any day from a heartattack.
- Without the experiemental Huntington's medicine, my mom's symptoms will worsen and she will eventually pass away.
Picking Her PosionMy sister had to have "the" conversation with my mom that no child should have to have with their parents at our age. (She is 24 and I am 22.) My mom had to decide which medicine she would like to persue and, in theory, "pick her posion."
I can't even imagine having to determine, between two horrible options, how I am going to leave this earth. On one hand, a heartattack could happen at any time and you would be living day-to-day. On the other hand, Huntington's disease strips you down and leaves almost no trace of "yourself" before it takes your life. You will be hateful, bipolar and a danger to yourself and others.
Huntington's can not be prevented but there is medicine for my mother's heart problems. I selfishly want her to continue fighting for as long as she can but it is her decision how she would like to live out the rest of her life. She watched both her mother and sister die from this disease and I know she fears how bad it could become.
"I am too stubborn to die just yet!"My mom, in her true, blunt/German fashion, took the news in stride. Her reply was to hold off taking the potassium/cholestral medicine and try to change her lifestyle. I doubt exercise and change in diet will make that much of a difference at this point but at least she still has some fight left in her.
Her "fight" was apparent when I asked her how she was doing after the news.
"Schatz, (sweetheart) I am too stubborn to die just yet!"
For my sake, let's hope she is right!