Update on my visit to Duke ALS Clinic- My third visit

Duke ALS Clinic Update – My third visit

 May 25, 2010

 My appointment was at 1:30 PM.  We met with Kevin Caves and Meredith Nye, both from the Department of Speech Pathology & Audiology.  We first addressed my ability to continue using the computer.  I am starting to have trouble typing as my left hand is getting weaker.  Kevin (who is the Director, RERC on Communication Enhancement) suggested I try an onscreen keyboard and he ran me copies of a website that I can try one out for 60 days free trial.  I’ll try this and see how it works.  Meredith (who is a clinical speech pathologist) had me read a page so she could get my speech rate.  My speech rate actually had improved from last time.  She also checked my mouth and tongue muscles which still are normal.  We went over swallowing and clearing my throat.

Next I met with Fay Tripp, OTR/L, CDRS.  Fay is an occupational therapist.  We went over ways to make transfers easier, especially for bathing.  We went over arm stretches to maintain range of motion.  My right foot has had swelling in it occasionally and they gave me a light gage compression stocking to use when it swells.  I am also to keep my feet elevated (which I have been doing) and do ankle pumps to help with the swelling. 

Our next session was with Jan Gwyer, TP, PhD.  Jan is a physical therapist.  She tested the strength of my arms and legs.  She found nothing that I didn’t already know.  My right arm has little, if any, ability to move and my left arm is slowly getting weaker.  I am able to stand, but can only walk short distances with assistance.  Jan also went over the swelling in my right foot and agreed with the suggestion of wearing a light gage compression stocking when my foot is swollen.

Then I met with Andrea Johnson, the respiratory therapist.  Andrea is from Alabama and a huge SEC fan, especially football.  Of course, I had to give her a hard time about Alabama as they are one of our big Tennessee rivals.  After testing my forced vital lung capacity (FVC) she told me that my total was 53% predicted.  She also checked the oxygen in my blood which was at 94.  She said it should be in the high 90’s.  Andrea is going to have Linn Care come out to the house and take a read out from my BiPap and adjust my BiPap pressure, if needed.  She is also having them run an over night test on my blood oxygen.  If it is still low from that test, she will have Linn Care add an oxygen devise to my BiPap that will condense oxygen from the air and feed it into my BiPap.

Susan Steves, RD, LDN is the registered dietician.  She was a bit concerned about my weight loss.  I explained to her that I had Bronchitis (which I didn’t realize that was what I had for approximately two months) and I was having a hard time eating much due to coughing and shortness of breath.  After finally going to our medical doctor here who prescribed an antibiotic and a series of steroids, the bronchitis has been cleared up now for over two weeks and I am back to eating anything I want and as much as I want.  I really wish I had gone to him prior to the golf tournament as I feel so much better now than I did during the tournament.  Anyway, I told her I am back to eating anything I want and have no trouble eating.

This time, I did not see Dr. Bedlack, but I saw his counterpart, Candace Boyette, MSN, FNPC, Division of Neurology.  I will see each one every other visit from now on.  Candace was very easy to talk to and quite informative.  She listened will and responded to what I would talk to her about.  She, as did Dr. Bedlack, in my last visit to Duke on February 16th, strongly suggests that I consider having a feeding tube  This is a decision I will have to make soon.  I was impressed with her knowledge of ALS and her communication skills. 

I shared with them the success of the Don Steffen Charity Golf Tournament on May 1st.  Everyone on the staff was amazed at the wonderful results that were accomplished at this tournament and the fact that it will be an annual event!  What a wonderful catalyst to help me be an advocate for this horrible disease that can strike anyone without warning.

Our next appointment at Duke to see Dr. Bedlack and his staff will be August 24th.

After our long day at Duke ALS Clinic (1:30 to 6:30 PM) Diann and I joined one of my very good friends, Jeb Koury, for dinner.  It was great to see Jeb who happens to be moving to Raleigh this month.  Hopefully, next time we go to Duke we will be able to have dinner with Jeb and his lovely wife, Royce.  Royce was still in Florida during this visit getting things lined up for their move.  We missed you Royce!


2 Responses to “Update on my visit to Duke ALS Clinic- My third visit”

  1. Dick Yahnke Says:


    Your will and spirit continue to be an inspiration for me every day. It was great to be with you to share the golf event. I appreciate the update on the battle. You know you will continue to be in my thoughts and prayers.
    Dick Yahnke

    • steffen5 Says:


      Thanks for your continued thoughts and prayers. Being postive is the only way to be. It is great keeping up with you and I look forward to seeing you again sometime soon. Thanks for being a good friend. Talk with you soon.


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