Friday, October 1, 2010

Clinics - 3 months after the Diagnosis

Dear Team Anderson Fans,

Today was an eye opening experience! We had our 3 month check up at the Methodist Hospital and we felt at home. There were 28 ALS patients registered to attend this intense day, and I do believe they all showed up. On the 8th floor of the Scurlock Tower off of Fannin, we all checked in and got a name tag. Peter had stickers all over his because this was his first "clinic." The way this day was to unfold was to see and re-meet the Dr.'s and Staff we had met 3 months ago for a follow up visit and to meet other patients and their families who have ALS and to exchange stories, triumphs, declines and successes as the morning went along. The morning was well thought out and had a deliberate meaning with purpose to why we were there and to be focused again on the great instruments and guides for helping deal with ALS.

Sharon Halton met us at the front entrance and she directed us to the trial study dealing with the effect of fatigue on the pulmonary function. We met Dr. Kathleen Alfuth who was the primary doctor conducting the study and redid the test that Peter did last August when we began this whole process. Janet, the pulmonary technician, was our coach and mentor, she is wonderful and I so hope we get her every time. She knows her stuff and is so encouraging and positive when she administers the breathing tests. Well, needless to say, Peter was off the charts, better than 3 months ago....can you believe it.....so proud, so proud. They even had to go find a new machine to record the strength of his breathing function. What a wonderful result and we were so happy....

As the day progressed, we visited all of the Dr.'s and Medical officials that we saw 3 months ago. Peter did another pulmonary test with another tech from Poland, so bright and fun. That exercise tested how well Peter's diaphragm worked. Peter took 10 fast but big breaths to see how much carbon dioxide he was able to get rid of in that amount of time. It went from 38 to 14 which were the exact numbers they were looking for. So far all the tests Peter was taking, he was excelling in.

We met with an attorney, Bill Hayes to give us legal advise. He confirmed with us the items our financial planner had already given us and we couldn't be happier with Scott Emley, so we will stay with him for advice and direction. Our next visit was with Purvi Patel, Physical Therapist who was a graduate from KU and so sweet and knowledgeable. She advised Peter to use wrist weights when exercising instead of hand weights and to lower his bike riding to no resistance. We will do that so he doesn't feel fatigued. In the past months after a work out Peter's legs have felt jello-like, so we hope not to have that anymore.

We then met with Clara Utley, MDA representative to tell us about upcoming events that were planned for ALS. She informed us that if our insurance doesn't pay for the amount of our "clinic" today then MDA would pick up the rest. Our insurance is amazing but that is definitely a good thing to know, just in case....

Peter then went to the "Appel Scoring and Grading Room" where they tested him on climbing stairs, wheel chair moveability, laying and getting up on a bed and cutting a knife into playdough. He did great. Maybe alittle slow and deliberate in coming down the stairs but he did fine. Our next testing room was with the Occupational Therapist tech, Tracy....She tested Peter on the right and left squeezing mechanism, the pinching mechanism and the block turn over as well as the peg, washer and nut configuration game. They test the right and left hand separately and his right is definitely the stronger while his left is the weaker. Some of these test, I think, are not really fair, educationally speaking, because of the size and the non-textured contour of each individual piece. Please remember that I am recalling from my teaching years and I haven't near the education that these incredible Dr.'s have but it seemed odd that you would put a very tiny, slippery device in front of someone and ask them to put the contraption together in parts. You know as my family and friends that I am always going to take my husbands side, so I have said my piece. There you have it.....

We met then with Dr. Holland, who reminds me of Bailey on Grey's Anatomy and she told Peter to get a Flu shot and to wear his brace for his left leg and foot on a daily basis not just at work. The studies show that with every fall you have, the disease increases with ALS patients. As to this date, Peter does not wear the brace when he is at home or out and about, only at work. We are now rethinking the use of this AFO device and will talk to the Physical Therapist for her advice as well. Dr. Holland was so happy with Peter's breathing and his testing that morning. She had the biggest smile on her face when we left. So did we, we really like her.

As the morning went on, we met with Dolly Attwal MS RD LD, Clinical Nutrition Manager, she was someone we hadn't met with prior to today...We loved her because she said we need to keep Peter's weight what it is as of today. More nutritional snacks and we can have white cream sauce instead of marinara sauce...who would have thought....it is great for Peter, I am going to have to watch it......

The last couple of people we met with were the Occupational Therapist and the Speech Pathologist. The Occupational Therapist was Pam Glazener who gave us great ideas on help issues around the house. Bars in the bathroom, etc. Peter and I are going to invent a devise to help him with his "lazy fingers" on his left hand. Look for that in the next coming months. Peter has been having difficulty with his fingers slipping on the computer, so we have devised a plan to come up with a device to aid him to better equip him in this endeavor. We will let you know what we come up with. The Speech Pathologist, Jennifer Mebane with mentor Laurie Sterling came around and asked Peter if he was having difficulty with his speech, swallowing or eating and drinking and he said NO! Thank Heavens! We felt we are on the upside for once. Yea for Team Anderson.......

Then the MAN came to get us.........Dr. Appel was in the building, actually he had been there the whole morning talking and working with his patients but it was our turn to have him for 30 minutes. What a delight, and how refreshing to be under his wing. It is truly amazing how you look up to a person who has all the answers and marvel at the words that come out of his mouth. Dr. Appel is a human being but because he is human himself and fights for such a great cause, you can't help but be in awe of him. If you are wondering if we had questions, yes we did and they were written down and color coded. He wanted to answer my questions first because he knew I would write about him in the blog, which he reads. He is a man of many talents and we are so glad he is on Team Anderson with us. Dr.Appel wants Peter to begin .8 millograms of Folic Acid and is happy that Peter has cut his Lipitor in half. He absolutely loved Peter's breathing scores and was encouraged by all the other testing mechanisms. Clonus is a symptom of hyper active reflexes that is very common in patients with ALS. Peter has this but now Dr. Appel has prescribed a medication to help with this. This will help with his leg cramps and leg movements. It will be nice to see if this medication helps Peter with his sleeping.

It was so nice just to talk to Dr. Appel one on one. His knowledge of ALS and his passion really shines as he radiates his drive to find a cure for this incredible disease. Our next visit will be in 3 months on January 7th, 2011. We have made new friends, seen mostly men who have this disease, viewed our new friends with totally different symptoms but still classified as having ALS and have come out stronger and ready to fight. This disease is not going to get the best of us. For this entire day, we have been introduced to heros and we view ourselves as ones ourselves. Peter did an awesome job today and his determination and will to fight is the best anyone of us can hope for. I am truly blessed to be married to my best friend and to a man that wants to help in the fight to find a cure for this horrible disease. I only hope that I can be half the fighter he is.

Thanks so much for following along our journey. We continue to climb that mountain and with your strengh we will succeed. Good night for now.

Love to all, Team Anderson..........

8 comments:

  1. Thank you for the informative and uplifting message, and for taking us along as part of Team Anderson. We are enormously proud our beautiful young family.

    Our love, Mom and Dad

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  2. What a great update, You guys are doing so well stay strong we are praying for and with you! Go Team Anderson!

    Mike, Sonia Joey and Timothy

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  3. We've rooted for lots of teams in our lifetimes, but none makes us prouder than "Team Anderson". Your strength and love for each other inspire us all. We love you.

    Mel & DonnaDee

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  4. Thanks for the terrific update, DeeAnn! You and Peter were in my thoughts and prayers all day yesterday. --So glad you're in great hands at Methodist and with Dr. Appel. You are an inspiration to me and to everyone whose lives you touch!

    Cheering for you every day!

    Love,
    Erica

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  5. Great update. You remind me of Nida with all your note taking and questions for the Dr's. We admire yours and Peter's courage and determination. You remain in our thoughts and prayers every day.

    Woody and Nida
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  6. It was special to read about each individual member of Dr. Appel's team. We are so very grateful for the Methodist program.
    Love, Mom and Dad

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