Mother to 3 grown sons. Grandmother to five grandchildren, ranging in age from 2 -18 yrs old: 2 girls and 3 boys. My hobbies include playing the piano and the organ. I currently reside with my youngest son and his family in Northern California.
My MSA has progressed as follows:
<1999 - Trouble getting up from a seated position; weakness in legs. Living independently in my home in IL. Lower back trouble was a problem.
2000 - Fall down cellar stairs. Caught heel and fell down 3 stairs.
Fall 2002 - March 2003 - Doing intense water aerobics with no problem.
March 2003 - Fall in bathroom cut left hand. Began to have difficulty using L hand.
Jul 2003 - Seemed just "tired" to family.
Aug 2003 - Move to Boston to independent living apartment in a retirement community. Difficulty with stairs and getting out of a chair observed by family.
Fall 2003 - Able to talk, drive walk, but slow to get up.
Fall 2004 - Visit a neurologist (Dr. Levy) for the first time. Dx'd with PD, prescribed Sinemet because have a spatial relations problem. Feel the need to touch the wall when walking or the car when walking outside.
Jan 2005 - Admitted to Acute Hospital for Intestinal surgery (kink in Intestine)
Jan 2005 - Admitted to Acute Rehab for 5 1/2 weeks - Walker was prescribed, PT and OT began.
Jan 2005 - Symptoms included difficulty dressing, difficulty with balance, difficulty walking, dizziness. Need to use grab rails and bath seat.
Aug 2005 - Visit a neurologist (Dr. Simon) specializing in Movement Disorders at the Movement Disorders Clinic at Beth Israel Hospital in Boston, MA. Diagnosed with possible MSA.
Jan 2006 - Unable to walk >20 yards with walker, using grab rails, bath seat, slurred speech, wheelchair used outside/for any distances, some facial freezing.
May 2006 - Move to Hudson, Ohio independent living apartment in retirement community close to eldest son/son's family.
May 2006 - Visit neurologist (Dr. Giroux) at the Cleveland Clinic. MSA dx substantiated. Parkinson's walker ($600) was prescribed.
Jul 2006 - Acquired Hospital bed.
Nov 2006 - Begin Botox injections in neck for Cervical Dystonia. 4 treatments: Nov '06,
March, July, Oct 2007. Some pain relief. Moderate improvement in the cervical dystonia condition as head was not as severely pulled toward one side after the second treatment.
July 2007 - Ability to move legs diminished. Left arm contracted up to chest. Cervical dystonia, swallowing difficulty.
Sept 2007 - Hospitalized in Skilled Nursing Fac due to bedsores, for 2 weeks.
Oct - Dec 2007 - 24-hr, 2 person-assist aide care required to live independently. Retirement community requires permanent move to SNF, in order to stay. Vocalizations extremely limited.
Dec 2007 - Move to Northern California to youngest son's home - 12 hrs of private aide care per day, 7 days/week, pureed foods and thickened liquids, bedside commode, hospital bed, tilt-in-space wheelchair, communication board, facial freezing. Hoyer lift used temporarily, but uncomfortable, as causes anxiety.
Jan 2008 - Speech Therapist recommends feeding tube. Tube declined.
March 2008 - Unable to take in any fluids due to diminished swallowing ability. Jello and custard-consistency pureed foods only. Lose most vocalization abilities.
June 2008 - Right hand contracture. Right arm beginning to stiffen.
Aug 2008 - Completely bedridden, toileted using bedside commode, neurogenic bladder. Fall from wheelchair suffering minor head contusion. Limited ability to use communication board due to R hand contracture. Able to turn head, though chin rests on chest due to dystonia.
October 2008 - Continue to eat pureed foods, slowing of R hand in the afternoons/evenings especially. Long term and short term memory seem intact. Enjoy passing the days going through family pictures, watching Jeopardy and going outside in CA sunshine.