Warning: Dirty Laundry Ahead

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!

ALS Hates “Happy”

I just read a quote from a PALS (person with ALS): "ALS hates happy"….I have been trying to keep a PMA (positive mental attitude) but I think I'm losing the fight. The past month and a half I've taken a downward slope in my progression….nothing NEW, just "the same, but worse." What makes it harder is that there are some things that would make my quality of life much better but I can't afford them. Now, I'm not talking things like a vacation (although that would certainly give me something to look forward to and WOULD increase my quality of life…although I'd rather just be able to go back to WORK!). I'm on oxygen at night now in addition to my AVAPS (non-invasive ventilator). I had hoped it would help me sleep better, but no such luck. Sleeping with a mask on is hard anyway (as any FEMALE with a CPAP will attest…I think men can sleep anywhere under any circumstances, so they don't count). Having the mask tethering you to a gizmo is a pain. Having the tether be 1" corrugated tubing (that isn't comfortable to lay any body-part on) is less-than-pleasant. Now add the fact that my joints and neck hurt…and turning over or moving in bed is hard. What that all adds up to is my sleep SUCKS. Meds aren't even working anymore. I'm more tired that I should be, and I was tired enough to begin with. I try to nap every day but that just takes more "life" out of life. I need an adjustable bed that has memory foam so that I can comfortably stay on my back in one position all night.

We need a vehicle that is suitable for all of us. We have been given a cargo van converted with a wheelchair lift, but Christopher cannot safely ride in it. After checking with several dealers and body shops we've been told that there is nothing that can be done to remedy the situation. All I want to be able to do is go out with my son!

It is bad enough having ALS and being without a spouse-caregiver, but life is getting really difficult and discouraging. Other PALS (persons with ALS) complain that they "spend all their retirement" on ALS-related expenses. I'm growing less sympathetic to that complaint. I'd gladly spend any retirement I have to be able to enjoy the time I have left. I have no retirement to spend.

If I sound like I'm having a complain-a-thon, I am. I've been stoic as long as I can. I am angry about having ALS and angrier that I am STUCK staring at my walls all day long. This is NOT a LIFE.

I apologize for the negativity. I'd love nothing better than to be able to work harder to meet the needs of my family…"pick up an extra shift" as it were. What would you do if you were in my situation? ALS hates "happy"………..

The Herald Bulletin - Positive People: Larry Davenport

My son, Phillip, is on the far right in the picture (dark hair)The Herald Bulletin - Positive People: Larry Davenport

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An Obituary for a Dear Friend

Today we mourn the passing of a beloved old friend, 'Common Sense', who has been with us for many years. No one knows for sure how old he was, since his birth records were long ago lost in bureaucratic red tape. He will be remembered as having cultivated such valuable lessons as:

Knowing when to come in out of the rain; why the early bird gets the worm; Life isn't always fair; and maybe it was my fault.

Common Sense lived by simple, sound financial policies (don't spend more than you can earn) and reliable strategies (adults, not children, are in charge).

His health began to deteriorate rapidly when well-intentioned but overbearing regulations were set in place. Reports of a 6-year-old boy charged with sexual harassment for kissing a classmate; teens suspended from school for using mouth wash after lunch; and a teacher fired for reprimanding an unruly student, only worsened his condition.

Common Sense lost ground when parents attacked teachers for doing the job that they themselves had failed to do in disciplining their unruly children.

It declined even further when schools were required to get parental consent to administer sun lotion or an Aspirin to a student; but could not inform parents when a student became pregnant and wanted to have an abortion.

Common Sense lost the will to live as the churches became businesses; and criminals received better treatment than their victims.

Common Sense took a beating when you couldn't defend yourself from a burglar in your own home and the burglar could sue you for assault.

Common Sense finally gave up the will to live, after a woman failed to realize that a steaming cup of coffee was hot. She spilled a little in her lap, and was promptly awarded a huge settlement.

Common Sense was preceded in death, by his parents, Truth and Trust, his wife, Discretion, his daughter, Responsibility, his son, Reason.

He is survived by his 4 stepbrothers; I Know My Rights; I Want It Now; Someone Else Is To Blame; I'm A Victim.

Not many attended his funeral because so few realized he was gone. If you still remember him, pass this on. If not, join the majority and do nothing.

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