IntrinsicTina

Every three months I see my ALS doc and today was the day.  My FRS is 17 and my FVC is 90%.  These values are down from 28 and 98% respectively.  Not great but not devastating either.  The main driver of the decreases are my loss of mobility as I am now wheelchair-bound.  I have had ALS for a year and a half and my decline is fairly swift...I wanted the slow variety but let's face it, I'm an overachiever. The good news is that my loaned Permobil C300 (power wheelchair) got the Physical Therapist seal of approval and is a good fit for my body.  We got a recommendation for a better cushion, a Rojo, as well as a vendor for an iPhone/iPad support.  This is exciting as I currently cannot dial 9-1-1 to literally save my life!  This should help. I was a social butterfly at the hospital today, meeting Linda White and her daughter, Kirstin, as well as becoming reacquainted with Vic and Jan from my ALS support group.  Additionally, I met a sweet, large black man with a spinal cord injury

I know everyone wants to feel good about themselves and sleep the slèep of the righteous.  They want to be secure in the notion that they are good judges of character.  People generally see what they want to see. However, too many of us know the truth of hat goes on behind closed doors.  From all public appearance my husband may look like an unselfish, long-suffering caregiver but I'm here to break my silence and tell the truth.  I am being abused.  Verbally and emotionally mostly with just a smattering of physical to keep me in line.   He has bullied me and dumped on me for years.  He has forbade me to participate in activities which have given me joy and built my self esteem.  He has kept me isolated from those who could help.  Nowadays, it's easier for him than ever.  People applaud his loyalty that he stays with his terminally-ill wife, selflessly attending to her every need.  Seriously?! He is angry, resentful, and cruel.  In front of others, he is loving and attentive.  F

I am sitting in the sun with my cat sprawled at my feet out on the front porch.  Hummingbird just buzzed us and fireworks boom all around us.  Between charges, the chickadees cheep in the poplar over my head while other songbirds sound all around.  Today is Independence Day in the United States of America.  While my husband and I are born and bred Americans who have always lived within the bounds of our great nation, my household is opting out of the festivities and celebrations today. Perhaps with my decreased independence and increased dependence, I'm not in the mood to celebrate. My household is affected by ALS. We feel like many of our choices, hopes, and dreams have been wrested away from us.  Instead of being a day of celebration our household seemed to take on the horrors of war.  F-bombs bursting in mid-air as my husband/caregiver and I verbally slash at each other.  We are exhausted! Unless we are destitute and piss what little money we have away, we do not qualify for any

Just because my husband says he loves me does not make him a good caregiver. If love is what I have then love is not getting the house clean, or making sure I have all the medications that I need, or making sure I have truly nutritious meals, or have any attention whatsoever to my emotional condition. Any suggestions that I have are met with much more than light resistance, in fact I am accused of heaping too many tasks on and being a shrew that always knows what's right and this stuff is told to me heavy on the sarcasm and derision.  I do not deserve to have mental anguish foisted upon me in what is likely the last years of my life. One would think that a man at 58 years old would develop some kind of a loving conscience. But instead I have my dry drunk husband that is good at looking good to others while behind closed doors he heaps on the mental abuse and employs manipulative and bullying behaviors to get his way.  His Dr. Jekyll and Mr. Hyde personality makes it near to impossi