IntrinsicTina

I had my first outing using my power wheelchair, a slick blue  Permobil C300. Consistent deterioration of the muscles in my legs, arms, hands, feet, torso and neck, made the manual wheelchair not a viable option for a weekend trip. This body needs support! My husband loaded up the manual and power wheelchairs into the back of the Ford Ranger pickup truck. No wheelchair van as yet. He used a two-piece hinged portable aluminum wheelchair ramp and walked it up using the controls.  Thank God I didn't have to remain seated in it I would've felt like grandma Clampett rolling down the highway.  Anyway, we loaded up everything we could think of including my curved fat-handled silverware, scooper bowl, nonskid mat, Poise pads, supplements, waterbottles, beach towels, a body pillow to wrap around my torso and a horseshoe-shaped pillow that clamped around my neck.  Several false starts later and then down the road we went. This is a new adventure for us you know traveling with all the par

I've been reading some posts from fellow bloggers with this disease and I'm feeling lame.  It appears that they continue to blog whether they feel good or bad.  While I've been mired in despair and self-pity and instead of capitalizing on expressing those feelings I contained them within and I suspect made things worse on myself.  I have had the tendency to hold in my emotions and my massage therapist believes that is the very tendency that could have brought about ALS in the first place. I have been blessed with a massage therapist that discovered me and approached me with the idea of finding out exactly how massage therapy works with an ALS patient.  She has offered me her services free of charge if only I will be her guinea pig and report back honestly how each of her modalities work on me.  I will tell you, I believe I got the better end of the deal.  She works with wounded warriors out of one of our local military bases as well as her home and she is very proactive i

My mother always said that family would stick with you until the end. This was in response to my obvious preference of friends over family when I was but a teenager.  I thought it was bullshit back then yet another ploy to try to get me under strict control.  But secretly, part of me desperately wanted to believe. And so I did. As a young adult, when life would kick me in the teeth, I would pick up the phone to talk to my mom.  Did it ever really help? No.  Most of the time it was painfully obvious that she would much rather sit smoking cigarettes, watching her daytime soaps, drinking her Pepsi's.  Where was the good advice?  Where was the tender understanding?  My anger and my rage grew over her apparent indifference. As a thirty-something divorced mother, one that entered recovery for alcoholism, I realized that my mother did the best that she was able with the tools that she had.  After years of recovery, I realized that she was human and had a limited attention span.  L

It is difficult to write honestly.  I think that goes double when you rely upon others for your daily care.  How does one say what they really think? How do I let it all hang out, warts and all? I believe it is impossible to be positive 100% of the time.  If you knew this about me, would you still like me?  I have prided myself on my positive attitude in the face of this freight train of a disease.  And I am ashamed of my negative emotions.  But I feel I shall burst apart in the clichéd million tiny pieces if I hold in all of this pain. In the past few weeks I have cried so many tears, literally gagging on my emotions that erupt out of me at inopportune times.  My mate does little to try to stem the flow, except that he doesn't want me to scream too loudly so the neighbors know what's going on, or write about my pain so that family or friends are alerted. Is it that he is abusive? Yes. And truthfully, so am I. Pride? Hardly! Bald-faced truth.  Our world has been turned upsi