My Life with MSA...
Welcome to my NEW CaringBridge website. Please join me in this new edition of my life, after being diagnosed with Multiple System Atrophy (a terminal degenerative neurological disorder). As you read My Story, you will learn all about the Autonomic System and what happens when it goes haywire. To read how I got to this point, please go to The FRED PERRY project page (http://www.caringbridge.org/visit/fredperry
I have experienced many challenges over the past 56 years, but none have compared, in magnitude, to the challenge of trying to obtain a diagnosis for the illness that suddenly disabled me at the end of January in 2009. After starting out with uncontrollable gastro-intestinal symptoms, the illness started affecting other parts of my body with muscle and joint pain, overwhelming fatigue, heart irregularities, chest pain, unexplainable fevers, excessive sweating, out of control blood pressure swings, headaches, and occasional syncope episodes where I pass out and lose consciousness. It has taken almost three years and, after exhausting the combined knowledge base of the Community Health Network of central Indiana, The Franciscan St. Francis Health Network of Indianapolis, and the Indiana University Medical center, I was eventually referred to The Cleveland Clinic in Northern Ohio. After almost a year, eight trips to Cleveland (some lasting as long as two weeks), hundreds of thousands of dollars in combined medical bills paid by myself and insurance, tons of patience and endurance during a barrage of tests and procedures, I was finally referred to Froedtert & The Medical College of Wisconsin. You can read all about what got me to this point by going to The FRED PERRY project (http://www.caringbridge.org/visit/fredperry
At the conclusion of the lengthy process of elimination, my medical team at The Cleveland Clinic and Froedtert & The Medical College of Wisconsin finally determined a unifying diagnosis of Multiple System Atrophy (MSA), a terminal degenerative neurological disorder. MSA is a very rare disease that hasn’t had much time in the spotlight, but it needs to be talked about. It is estimated that MSA affects 4.6 out of 100,000 people, with more than half being men, appearing between the ages of 50 – 60 years. MSA causes the nerve cells in the brain to deteriorate affecting involuntary body functions. MSA is often misdiagnosed as Parkinson’s disease due to the similarities in symptoms. Multiple System Atrophy is a terminal disease. Initially, the person diagnosed with MSA will experience slow and stiff movement eventually leading to problems with coordination and balance. Often the person will start to have frequent falls with no trigger. Some will experience Parkinson’s type tremors. One of the more noticeable signs of MSA is orthostatic hypotension where a person’s blood pressure falls dramatically when standing up. This causes the person to feel dizzy or lightheaded, possibly faint. Gradually, loss of bladder and bowel control, loss of libido (impotence in men), temperature control loss, impaired sleep, and difficulty swallowing will occur. As the disease continues to progress other systems will be affected and the person will eventually die from respiratory failure.1 There is no cure and treatment is limited to the supportive medication and therapies for the individual symptoms.
I have assembled a team of local doctors, who will work with the doctors at the Cleveland Clinic and Froedtert & The Medical College of Wisconsin to monitor and help to control my symptoms, going forward. Now that we have this diagnosis, things have become even more uncertain, with no idea of what will happen next. You are invited to join me on the next, and perhaps final, leg of this journey by reading my Journal (http://www.caringbridge.org/visit/frederickperry/journal
) entries. I also cherish any words of encouragement you might care to leave me in my Guest Book (http://www.caringbridge.org/visit/frederickperry/guestbook
) and if you would like to comment or contact me directly please feel free to Email me (mailto:email@example.com).
No one said that this was going to be easy, and I am beginning to think that it could not be any more difficult. But, I am not giving in and refuse to let it get me down. I look forward to this next chapter with the same determination and hope that got me this far and it is the support that I get from followers like YOU that continues to give me the strength to carry on.
1 March 26th, 2013 | Posted by ErinBezemer in Care Connections (http://www.wecare.ca/blog/?p=660