This is the most unusual Heavilin Herald we have ever written. You all know that Marilyn has not been well for some time. She has suffered from loss of balance which has resulted in numerous falls. When we took our apartment in Kansas we found a new primary care doctor who is committed to helping us find the cause. She connected us with a neurologist whom we have been seeing for a couple of years. We have had lots of tests and visits every six months. Always searching for the elusive cause.
Marilyn saw her Neurologist last Wednesday and she gave her a new, more complete diagnosis. After considering all of the observed symptoms, she said Marilyn has Multiple System Atrophy-P. It is often referred to as MSA-P. The P stands for Parkinsonian symptoms. MSA-P is a fatal degenerative neurological condition of the brain. It is a rare condition affecting 15,000 to 50,000 adults in the United States. Life expectancy is 5 to 10 years. Since we have seen symptoms for some time already, we’re not sure when the count should begin. Our best guess is that Marilyn may have one to six years to live.
Apparently the Neurologist thinks Marilyn will soon be facing some major lifestyle decisions. She encouraged Glen and Marilyn to talk about those decisions now. We have been revising our Advance Healthcare Directives to make sure they reflect our current positions. This afternoon we met with the Notary Public and so we have our new versions ready to distribute to the doctors and hospitals.
MSA affects the autonomic functions controlled by the brain. That’s things such as balance, heart rate, body temperature, body movement, bladder control, speech, and swallowing. One of the major problems Marilyn will face is eating. Basically, MSA means that parts of the brain will stop working and the brain won’t tell the throat muscles how to swallow.
Marilyn thinks she is ready to go. But she states “I like it here because it is all I know. I do hope I can make it until I am 80. Just one and a half years to go! My birthday is November 4, 1937”.
In a nutshell that appears to be the future we are looking at.
Meanwhile in our day by day activities, Marilyn has had the cast removed from her left wrist and started physical therapy for the hand on Tuesday, May 3. She is basically having physical therapy every day for the next five weeks since she is having walking therapy on Monday Wednesday and Friday and hand therapy on Tuesday and Thursday. She is very busy and quite tired.
Marilyn reports, “I really thought my left hand would be able to do more than it can. I am kind of disappointed. It didn’t seem that it was that stiff. But so be it!”
Two weeks ago we took the motor home to Carthage, Missouri. It was placed on a consignment lot. Please pray that it will sell quickly.
Marilyn has had some special joys along the way. We got to have lunch with a young wife who, with her husband, is leading our Live Together workshop group. We’re meeting together for five weeks and we are working to find out what God wants us to do for the next several months or years. Amber is a very capable young woman and we had a wonderful time together. It is a very challenging class and we’re meeting very interesting people in the class. We meet on Wednesday evenings.
Marilyn was pleasantly surprised this morning when she received a phone call telling her that she had a basket of flowers delivered to the office. Once Glen brought the flowers up to the apartment, Marilyn was especially pleased to find that the flowers came from Mellyn for Mother’s Day. The main color is purple which is one of Marilyn’s favorite colors. It is a mixture of roses, green plants and a variety of different kinds of flowers. They are lovely!
Mostly, this month is filled with physical therapy appointments.
Thank you so much for continuing to pray for us and thinking of us often.
LY,
Glen and Marilyn