ALS Update

June 24, 2010 at 8:02 6 comments

Our experience at Hershey was far better any day at Hopkins.  I saw my neurologist once in 2 1/2 years.  At Hershey I will see every team member including the neurologist every three months.  Everyone was friendly answered all our questions, tested my muscles, my breathing and my balance.  I am getting Botox injections into my saliva glands next time we go to Hershey to control my saliva coming out of my mouth as drool.  A nurse named sue came in with a big smile and answered questions we could not open on our computers.  Then a women came in to check my breathing which turn out be in the mid 60s. The neurologist was with another patient so Nun came in to speak us about pie in the sky stuff.  The neurologist (Dr. Simmons) came in answered all of our questions and examined my muscles. We asked about the drug trials coming up in the fall most of them he didn’t recommend because I was too healthy.  Then he said I was strong, we talked primarily about my back muscle cramping up on me.  When I’m working in the garden my back does not bother but when I sit too long.  I need to become more active.  He put breathing results in perspective for us and said to us that he was not concern about my breathing.  Part reason was that breathing tests test inhale strength and exhale strength but they do not take into account weak lips.  Then a nutritionist and speech pathologist came in to test my swallowing while I drank from a cup putting her hand on my throat.  I thought this was so funny her hand was on my throat I had stop laughing.   Then we did the same thing eating applesauce, then fruit cocktail, and then a gram cracker.  She told me what I figured out by experience soft foods easier to swallow that doesn’t cause a choking event.   The nutritionist  agree with what Debbie was doing putting to cans down my tube then at lunch time a smoothie with all different kind of fruits, crushed or liquid vitamins, and two different kinds of protein, then I eat something I chew for dinner.  When working in the garden I’ll ask Debbie to put a full bag of water into my tube.  I can no longer drink water it makes me choke, or crackers the dust from chew makes me choke and lettuce and the skins from apples.  Next we talked with the occupational therapist I don’t remember anything about that visit probably because I kept thinking about if her freckles and did cause kids to tease her about it in school.  Last, came physical therapist showed me how to do several stretches.   After physical activity suggested that walk about a mile then stretch my muscles three times a week.  She tested my flexibility and how strong I was.  Then she had me walk down the hall made a right turn into large rehabilitation room where I climb three flight stairs.  She said, I was more flexible than most people my age who were healthy and she said I was still strong.  She had nothing to recommend.  I was wearing loafers I and drag the heals she was on my right side as I was walking she thought I dragging my right foot we check out next time and will not be wear my loafers any more.  That took four hours and we did not wait anyone except for the neurologist who was with another patient.

Each person wrote notes after their examination of me.  At the end of the day the team gets together and compares notes.  They come up with a plan for my treatment next we meet. The news was positive the people were positive it was a great day.

Praise God!!!

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Entry filed under: Uncategorized.

David & Megan’s Tiny Baby Joanna Tiny Joanna in God’s Hands

6 Comments Add your own

  • 1. mandy  |  June 25, 2010 at 8:02

    hi its me mandy…abbys friend she worked with at subway… i am so glad to hear that u are doin good… and that u had a better experience in hershey than at john hopkins… maybe it is because they smell that delicous chocolate all day just joking… it seems from what i read that they are more together and on top of things and that is the attention you deserve hope all remains well…god bless and i will continue to keep you and the family in my prayers.

    Reply
  • 2. Martha  |  June 25, 2010 at 8:02

    Paul, thanks for the update. Glad it’s positive. Glad YOU’RE positive! Continuing to pray to the God who delights to answer the prayers of His Children.

    Martha

    Reply
    • 3. traskman  |  June 25, 2010 at 8:02

      Thanks Martha, He answers so often with a yes.

      Reply
  • 4. Dick  |  June 25, 2010 at 8:02

    Paul,

    Glad to hear that your experience at Hershey MC was so helpful and positive. They do look like they have much more to offer you there. Glad to hear they evaluated you as being strong and that the specialized team is coming up with a plan for you.

    My mother had brain surgery at Hershey MC in 1981. While I was there walking one day I came across a glass encased pastor’ s study. I think it was in back of the Darry Presbyterian Church and had been built in 1732 ( G Washington’s birth year). The study had been encased for preservation by Milton Hershey. The historical marker said something like, “Through this door men went out to fight the Revolutionary War.” The mail drop was a slit in the wall of the log cabin structure. A pulpit from the early 1800s was there also. Check out the Pastor’s study and relish the history of it all. I hope it is still standing and has not been sacrificed for a parking lot expansion or other such progress. Enjoy!

    Blessings,

    Dick

    Reply
  • 5. traskman  |  June 25, 2010 at 8:02

    Thanks Dick

    Reply
  • 6. joyinthevalley  |  June 25, 2010 at 8:02

    That’s wonderful!
    I find that these experiences help us to remember, in our trials, that our father loves us and cares for us tenderly even though he has ordained this tough and rocky path for our lives.
    Thank you for praising Him in this. It encourages me!
    Pam

    Reply

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