You can reach Sue at (314) 452-3685 or (314) 726-2032. You can write to her c/o Rose Holt, 905 Barnard College Lane, St. Louis, MO 63130
It's been a day of doctoring. I saw Dr. Dooley, my neurologist this morning. Up until then I was resigned to the notion that I had ALS and very down. ALS had been my suspicion for a long, long time, and I thought my suspicion was confirmed for me in my telephone conversation with Dr. Dooley a week ago.
I came away from this face-to-face with Dooley much encouraged. For one thing, the diagnosis is not certain and for another, my symptoms are atypical for the disease. Dr. Dooley examined me and found me stronger. He said people with MND (motor-neuron disease, of which ALS is one) DO NOT get stronger. I am stronger. Of course, I knew that from actual measurements of my strength at the St. Mary's Physical Therapy Center. What I didn't know until today is that getting stronger points away from ALS and MND. However, I certainly have something terrible wrong, and it is limiting me in ways I find extremely vexing and frustrating. Now, though, I am more hopeful that I can continue to improve.
Dr. Dooley and Dr. Smith (of the Mayo Clinic) do not recommend treatment now beyond rigorous physical therapy. In six to nine months we'll do a reassessment, perhaps at the Mayo Clinic again. In the meantime, I am scheduled to see Dooley only in October unless I feel a need to see him before then. If my condition were to worsen, Dooley would consider restarting the Solumedrol infusions but doesn't think they are warranted at this point. And there are side effects.
Rose, who has travelled me on this miserable journey and shared most of the physician consultations with me, is more hopeful than she has been since we left Dr. Smith's office in mid-June. The waiting has been terrifically difficult.
When I talked to Scott this afternoon, he had these words of wisdom: "Mom, isn't it better not to know what's wrong with you than to know you have something terrible?" Of course, he's right.
After the appointment with Dooley, I went to see my primary care physcian, Dr. Barake, about my stopped-up ears. This was my fourth trip there about this problem. He thinks I have an inner-ear infection and has prescribed antibiotics and a decongestant. If I'm not better in a couple of weeks, I will go see an ear, nose and throat specialist he has recommended. Also, Barake gave me a prescription for some new ointment for my psoriasis and has referred me to a different dermatologist for that affliction which I have lived with now for years.
And now we are off to see my healing touch practitioner. How in the world did I ever have time for a job?
2 comments:
This is such wonderful news. The message here is the power of prayer, and please, everyone, keep Aunt Sue in your prayers. The one good thing that has come of all this is the how it's brought our families together and that Aunt Sue knows in her "living years" how very much she's loved and how many, many lives she's touched.
Thanks for your loving comment, Sabrina. Yes, your Aunt Sue has touched a lot of lives in a lot of ways. Just this week we had two young men show up to move some stuff for us. One she knows well, someone who was in Scott's kindengarten class, the other a friend of the first whom Sue has befriended. A marvel to see just how much she is loved and respected.
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