ALS Clinic Day

Well a week has gone by again without a blog post by me.  Where does the time go? :)

Work has been busy, and last week I had two acupuncture treatments plus a number of projects that needed to be completed.  Jean, Kelly, and Liam came down for the weekend and we had a very nice visit.

Today was my second ALS Clinic at Hershey Medical Center Neurology.  My first was almost 4 months ago, mid-May, about a week after I was diagnosed.  Had another good report today!!!!  While my respiration wasn't rated as high today as it was in May (96 in May vs. 89 today), it was still very good, considering that in May I was working out on the treadmill 3-4 mornings each week, and since I was diagnosed I haven't worked out more than half a dozen times.  Plus, it is goldenrod season - my worst allergy time of year.  I am hoping to have a better reading when I go back to my next clinic on December 10.

Weight was up 2 pounds, so the dietitian was very happy.  Blood pressure was 120/82, also excellent considering I was at the doctor's office.

My speech is much worse than it was in May.  I have an appointment with Schwanzenbach Consulting on September 17 to review assistive technologies that may help me. 

Today at clinic we also talked about a feeding tube and diaphragm pacer, neither of which I need any time soon, hopefully, but I prefer to know the details and conditions under which they may become necessary.

My swallow reflex was qualified as very good, same as it was in May.  I do have trouble swallowing some of the larger vitamins I have/bought, so they recommended buying smaller/taking more pills, buying some chewables, or crushing them up in pudding, jello, or yogurt.

Arm, leg, and hand strength tested well.  My tongue and face is significantly more paralyzed than 4 months ago.

They split Kim and I up for a "test" for both of us.  Actually, it was a cognitive test for me to get a baseline, and questions for Kim about any noticed behavioral changes in me.  On the second ALS clinic, they want to evaluate if the patient has any noticeable cognitive deficiencies, as there is a link between ALS and Alzheimer's/dementia in about 15% of all ALS cases.  They also want to advise the caregiver about the possibility and ensure that they are monitoring for obsessive purchases, instability, or other cognitive changes.

The cognitive test consisted of the following:

• A short story read aloud (about 6-8 complex sentences) and the patient has to relate as many points as possible (10 out of 10).
• Stated numbers, which the patient has to repeat backwards.  Starts with 2 numbers, then increases by 1 every few groupings.  (I did pretty good up until about 6 numbers).  Need to work on my memory skills!
• Name as many words in 60 seconds that start with a specific letter.  (I didn't do as well as I hoped to).  Don't do enough crossword puzzles?
• Repeat the words that the analyst wrote down as quickly as possible.
• Name the pictures (100%).
• Point to the pictures the analyst describes (100%).
• Name as many words in 60 seconds that start with a specific letter and only have 4 letters total.  (Did okay).
• Repeat the words that the analyst wrote down as quickly as possible.
• Identify how many dots in each picture without using fingers (100%).
• Word spelling (100%).
• Point to one of the 4 pictures that most interests you (who knows?).
• Identify which of the 4 pictures the smiley face is looking at (100%).
• And finally, after all the mind gyrations, name as many of the story points as you can remember (8 out of 10).

Travis said he was pretty impressed with my response, which made me feel good.

We asked the research team about their knowledge of the Neuralstem, Brainstorm NurOwn, and John Hopkins ALS and Exercise research projects.  Neuralstem and the John Hopkins results haven't been published yet.  They advised that the Brainstorm projects required participants to live within 50 miles of the hospitals in the Boston area.  They New England ALS conference is in October, and the research team will have more information for us at our next clinic appointment.

And I agreed to a new Hershey Personalized Health Care research project.  I have to submit saliva this time instead of blood, and I have to mail it to Hershey.  I've got lots of saliva to provide. :)

So, no major change in condition, other than speech, which is excellent news!  Hopefully I get as good a report next clinic in December!

And, there was no co-payment today for my ALS Clinic visit - amazing.  The Ice Bucket Challenge funds will assist with ALS patient services for me and others.