I used to be strong and healthy. I used to work hard physically from about age ten. I used to be able to do the same amount of work as a guy of my same height and weight. I used to be 5'6" and weighed about 155 lbs. I did 14 years in Air Force Base Supply. I held my own. I rarely asked for help. The men respected me for not being a burden. I got the job done, and I did it well and on time. After the Air Force, I still worked in various areas of Supply, and I was one of the guys that everyone could rely upon. I worked in the yard. I took care of the house. I got the job done.
Then, in 2007, my right pointer finger started to shake. Then, it spread to my whole hand. The hand shook so badly that I could no longer write, type or use the computer mouse. "Improvise, Adapt and Overcome." I switched to my left hand and pressed on with my work. Then my right leg started to drag. My left hip had hurt for years before that. I have Degenerative Joint Disease in my left hip. It shows up on a standard x-ray. But now, I had a pronounced limp as my right leg dragged. Then my toes curled tightly into hammer toes. Then shoes started to hurt. Doctors, doctors, tests, tests, MRIs.......all normal. "The good news is that all of your test results came back normal. The bad news is that all of your test results came back normal. We have no idea what's wrong with you." Mayo Clinic refused to see me. They felt that the local doctors had run all the necessary tests.
Then, the fourth Neurologist told me about a Neuro-Muscular Movement Disorder Specialist at the University of Iowa. She referred me. It took nine months to get into see him. There is one in Omaha, but the waiting list to see him was a year. (Last month my doctor said that Omaha now has three such specialists, and the wait is down to two months.) My husband drove me to Iowa City. The doctor knew what it was: Corticobasal Degeneration (CBD). Also known as Corticobasal Ganglia Degeneration. It's a cross between Parkinson's Disease and ALS (Lou Gehrig's Disease). In short, part of my brain that controls movement is deteriorating. Do a Google search, or go here: http://www.ninds.nih.gov/disorders/corticobasal_degeneration/corticobasal_degeneration.htm and read the list of symptoms. It's very rare. Only about 10,000 people in the country have it. There is no known cause and no known cure...and it's fatal. CBD patients die from pneumonia caused by aspirating fluids (food and saliva). I've had it for seven years. Most people die after five. I figure I've got two to three years left to go. Speed of progression varies. Mine has slowed a bit this year.
I was diagnosed Dec 11, 2012. I retired from the working world Dec 31, 2012. On Jan 9, 2013 I submitted my application for Social Security Disability (through a law firm that specializes in only that). I was approved on the first try. Social Security has a list of diseases that if you have something on that list, and you've got the documentation to prove it, you are very definitely disabled - no argument. CBD is on that list.
I have canes, crutches, walkers, a transport wheelchair, and now (this summer) I have a power wheelchair. My insurance covered the whole thing, minus my deductible. It's a $7000 wheelchair, and can be upgraded to tilt and recline later, as my condition progresses. We live across the street from a hospital. I drive my wheelchair to doctor's appointments.
I have good days and bad days. On good days, I can walk around our (very small) apartment hanging on to walls and furniture. On bad days, I use whichever (of those mobility aids that I listed above) meets my needs. I can't use the walker or wheelchair in the apartment. There isn't room. I could get a 3-wheeled walker, which is smaller - and I probably will later - but it will be one more thing to store in this already too full apartment.
So, in summary, My right foot turns in and under, and my toes on that foot are curled. This makes my foot and ankle hurt a lot like a bad sprain. My right leg also shakes and spasms. My "good side" has a bad hip. My right arm shakes, twitches and spasms. My arms and legs ache but, fortunately, a medication controls that. My fingers curl into a fist. I have to manually open them or they dig into the palm of my hand. I tried clutching a small stuffed toy, but it gave me tendinitis in my wrist. My foot and hand have both lost a half inch in length, and both are always swollen. They are also frequently cold because of poor circulation. I'm in my third year of menopause, so I have hot flashes all day long. I'm either sweating or freezing. I am rarely comfortable. I injured my left shoulder muscle 12 years ago, and it's never healed. So my areas of pain, in order of severity are left hip, right foot, left shoulder, right hand, lower back (arthritis). Something is always either shaking, twitching, aching or in spasm. Right now my ribs hurt on the left side. I've lost a full inch in height, and now I'm up to 200 lbs. I saw my reflection at the vet's office yesterday. I look like a beach ball with legs. Welcome to my world.
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