WARNING: Dirty laundry ahead. Continue at your own risk. Please skip this if you are wearing rose-colored glasses.
I've had a pretty significant surge in progression since the first of the year. No new symptoms, but the old ones are definitely worse. Although the "experts" say that ALS has a "linear progression" I see myself having plateaus and 'spurts'.
I have no doubt that the stress of the past few months has made my symptoms worse. I'm not sleeping well, which I know makes things worse. To top that off, my sister decided to inform me last September that she is "too stressed" (taking care of my 82-year-old mother with Alzheimer's) to hear about "[my] problems" and she doesn't have "time or energy" to update me on Mom, so communication has been severed. Both she and my mother live more than 1000 miles away, and the only news I have gotten since September has been FROM my mother via voicemail (I can't speak on the phone). Unfortunately, it is difficult to know what is really going on due to my mother's confusion and memory-lapses. Without my sister being willing to "fill in the gaps" I've been left to speculate about exactly what is going on. My mother lives in an apartment for senior citizens, but it is not "assisted living" so it is hard for me to know if she is eating adequately, getting her medicine, etc. Is she REALLY out of food or has she FORGOTTEN that it's there?...stuff like that. The last time I got any information on my mom's condition (other than from my mother who has difficulty knowing what day it is) was in SEPTEMBER.
The KICKER here is what happened recently. My mother called and said she had to move to a motel "for a while" because there was a leak in her apartment. Come to find out (and this was substantiated by a call to the apartment manager) that she was in La Quinta for one week and that, according to her, she was left there with a 4 lb. jar of peanut butter, a loaf of bread and NO MONEY. THEN she told me that on day "5" my sister left for HAWAII! At that point I had no idea how long my mother would be in a motel (nor did the apartment manager). My sister never contacted me to let me know what was going on with mom.
This week, my sister shut off my mother's "Presto" system (an email receiving/printing device) that I used to send email to Mom AND cut off Mom's long distance privileges. My sister glibly stated, "Mom's long distance has also been blocked… so to talk to her you will need to call her." AS IF my sister isn't aware that I cannot talk on the phone!
I emailed and asked my sister to reinstate mom's long distance phone service. I have been able to reach my mother once since then.
All of this is just a perpetuation of the dysfunction of my family of origin. I've repeatedly asked my mother to move to Indiana over the past 20 years (and again as recently as 2 weeks ago) but she refuses.
I have no other family…so FRIENDS, you're IT. I refuse to "play the game" and I'm outcast and frankly, it's just as well I guess. It is just hard to know that I'm on my own, without a spouse or family support, facing ALS. I pray for the grace to keep my head high and live life to the fullest of my ability.
If you've made it this far, thanks for letting me "vent". I have bottled up the ugly parts of my life and tried to be "all-happy, all-singing" for decades but I'm realizing that I am who I am, and if you love me, you'll love me. For those of you who still do……..thank you. I love you too!