MSA is not considered to be hereditary. It generally affects middle-aged men and women, advancing rapidly, with progressive loss of motor skills, eventual confinement to bed, and death. It is very rare for someone to live 15 years with MSA. Those are the clinical facts of MSA. But they don't begin to address the havoc the disease wreaks not only on patients but also on family members, caregivers and friends, who watch their once vibrant loved one gradually lose all those abilities once taken for granted. It is the goal of all those who have been affected in some way by this disease to draw attention to it, not only during March but also throughout the year.
The above description of MSA would surely be scary for a patient or family member to read.As a speech-language pathologist, I can also feel somewhat overwhelmed when a patient with MSA is referred to my practice. The goals of treatment must carry some optimism balanced with realism. "Exercise", whether for swallowing or speech, must be presented to offer preservation of function while not inducing fatigue. Discussions must focus on the present with an eye towards future needs, including issues of feeding tube placement and non-oral communication systems.
I have invited a recent patient and his wife to be interviewed and share some of their experiences since being diagnosed with MSA. I thank them publicly for being so willing to share.
Mary: One of the challenges of MSA, is that the confirmatory diagnosis often comes about after several years of missed diagnosis. The perception verbalized to me by patients, is often that some doctor missed the dx., when, in fact, it sometimes just takes time and a process of elimination to receive a definitive diagnosis. When you were finally diagnosed, what were your intial reactions?
Gerry:At first we did not realize how bad that diagnosis was. The neurologist gave us a sheet of paper that included the words, "progressive and fatal." Then we looked it up on the internet and got all the bad news about the various symptoms.
There followed a period of depression and we could not believe this.
Gerry and Carol:The diagnosis came after two years of seeing a local neurologist who did not know what it was and said we should go to a university or Mayo or somewhere. We went to SFU Neurology Dept and got no diagnosis, only: "you are a phenomonon." Then to Mayo in Jacksonville for the diagnosis.
Mary:In retrospect, were their early signs and symptoms that even you ignored?
Gerry: I noticed that when I watched movies on the plane when I travelled (extensively for business) I was very emotional. I thought it was the altitude.
Carol noticed that I was still accelerating when cars in front of me were braking for red lights. Deterioration of driving skills .
Mary:Gerry, you were very active all your life, and involved in a lot of athletics. Yet, when I first mentioned "exercise" to you for preservation of swallowing function, you rolled your eyes, and asked: "is it worth it?" What role do you think exercise has now in your life? How do you pace yourself ?
Gerry:Excercise helps to maintain some endurance level. I try to maintain these levels, giving back slowly. Muscles that have been used seem to remain strong, whereas those that were not have deteriorated.
When I am very tired, I quit.
Mary:You mentioned that you attend a monthly support group that is about 90 miles away. Many people would not bother driving that far. What benefits have you derived from that support group meeting as well as some of the on-line communities?
Gerry and Carol:The others are in the same boat. We are struggling. Meeting and discussing gives them and me a chance to perhaps learn something. What works for one, may work for all of us. Like using a bedrail, the "breather" excercises, etc.
Mary:You have probably discovered that you understand more about MSA than many of your healthcare providers. What are some of the things you feel are important for all of your doctors and other health care providers to know about MSA generally, and about your care specifically?
Gerry:There is a steady decline. What I can do today i cannot do tomorrow. If it were not for my religion, I would be looking for a point to end it all.
Mary:How have your children reacted to your diagnosis? I imagine they look for ways to help. What are some things that adult children of parents with MSA can do?
Gerry and Carol:Our daughter attended the annual MSA conference in California and met some of the doctors that are searching for a cure, or an earlier diagnosis. This led to us attending a seminar in Marco Island where we were the subjects of a "clinicum practicum"
For more information on Multiple System Atrophy, including links to MSA organizations and research groups worldwide please visit: http://www.MSAawareness.org.
