NIH Visit Update

Below is a brief update (that I sent to our daughter, Bethany, who was on a mission trip to Dominican Republic) of our three day trip last week to the National Institute of Health (NIH). Incidentally, I am super excited because she got home safely from DR last night!

My cousin, James Gulley, works at NIH in cancer research and helped to get us an appointment for a “second opinion” with the top ALS neurologist there. What a blessing! It is a research hospital and all government funded so they arranged and paid for the flight and even gave a daily pardiem for food while there.  God provides in amazing ways!

Here is what I sent Bethany:

“We sure are looking forward to you being home on Tuesday!.... I just wanted to give you a quick update about our NIH trip this week. We had a direct, easy flight both ways and make good connections with the NIH shuttle.  Tuesday we went to NIH and filled out some paperwork and then spent the night with James and Trenise. We had a full (8:30-5:30), exhausting day of appointments and tests all day on Wednesday...especially exhausting was a 3 hour neuro-psych cognitive test/evaluation by a psychologist. I probably would have opted out of that one if I had realized what all was involved.  My head was spinning by the end! If I wasn’t cognitively impaired before the test, I certainly was afterwards! LOL

Bottom line, the main ALS doctor we talked to does concur that he thinks it is sporadic ALS with bulbar onset. Although they are going to do some genetic testing (blood work) for the more rare genetic mutation that can randomly show up in a few ALS patients.  We did just find out that I have a second cousin, once removed, on Grampy’s side who died with ALS in 1992. So there is some possibility that it may be the “familial” kind. This wouldn’t necessarily change anything for the medical system’s prognosis, but it would be interesting to know if it were the genetic kind.

The doctor spent two hours with us! He was very knowledgeable in his field, professional and matter of fact, did a very thorough exam on me, explained some things, and answered our questions. He also recommended one of the two usual ALS medicines, talked about the potential need for a feeding tube and breathing apparatus, and discussed how to treat the symptoms, etc...It was helpful to hear things from his perspective, but he didn’t give much “new information”. However, we were blessed to be able to be evaluated and talk with one of the top ALS doctors in the country and get some tests re-done. NIH is quite a place!

We didn’t feel an openness in him to share about the “Healing ALS” conference or hear of the supplements and therapies I am doing.  He didn’t seem to put much reliability in lifestyle and functional medicine as being much help. However, we see all that I am doing as potentially very helpful towards warding off progression and/ or reversing ALS as the Lord sees best. 

He is the ultimate one who knows the outcome and “length of my days”. So, we refuse to give up hope and our PMA (positive mental attitude). I am not just an ALS statistic! I am God’s child and He knows how many hairs are on my head and everything about ALL my neurons.  This is not stumping or discouraging to Him.  I am in His hands— and He is the Great Physician.

They also re-did some of the tests and actually I was encouraged by the results.  I “aced” the motor rating test, my lung function study was 94% and 102% and my swallow study was normal.  So still my main symptom is my slurred speech and thankfully I feel good— praise the Lord!...”

So that was the bulk of the update to Bethany (leaving out some pleasantries and “mushy” parts😄).

Thank you to each of you reading this for your continued prayers and support. I need them and appreciate every one.