Tuesday, September 27, 2011

Walk to Defeat ALS – November 5

Mark your calendars for November 5, 2011.  This year's Walk to Defeat ALS will be held on that date at Stonebridge Church.  We will again be walking and raising money as Team Anderson.  Karen Eckart is our team captain this year, and you can reach her at karen.eckhart@yahoo.com

New Clinical Trial

We started the new clinical trial last month.  It is a stage III trial sponsored by Knopp pharmaceuticals and Biogen.  It is a global stud involving more than 800 participants.  It is testing the effectiveness of dexpramipexole on slowing ALS disease progression.  It is a 12 month study, so cross your fingers crossed…

Friday, August 5, 2011

Re-Activating the Blog

Hello everyone – we apologize for not updating this blog in the last several months. We are now reactivating this blog, and we intend to update it with shorter but more frequent entries. During the first half of 2011, we completed participation in a stage II clinical trial sponsored by The Methodist Neurological Institute. As a result, we have become very good friends with one of the other participants and his wife, Glen and Bobbie Wesley of Baton Rouge, Louisiana. We will also be starting an exciting new stage III clinical trial later this month. The study is sponsored by Biogen, is a global study, and is testing the effectiveness of Dexpramipexole. More to follow…

Monday, November 8, 2010

A Huge Thank You!

Thank you to everyone who walked and supported the ALS Association's Six Woodlands Walk. Team Anderson had over 80 walkers, and many more who supported the event. We were the largest team to walk! To date, the event has raised over $60,000 to support ALS research. Thank you, thank you, thank you for helping to Beat the Hell Outta ALS!! It was a beautiful day for the walk, and the kindness, love, and compassion you all have shown us have been overwhelming. We are so blessed to have the love and support of such a wonderful group of friends and family.
Special thanks go out to the students of College Park High School and especially to Monica Thomas and her fellow student athletes on the College Park Volleyball team! Click this link to see lots of great pictures from the day's activities (Thanks Missy!)

Sunday, October 17, 2010

ALS Association Hosts Six Woodlands Walk

The ALS Association's Greater Houston Chapter is hosting its six Woodlands Walk to help fight Lou Gehrig's Disease November 6 at Stonebridge Church.
  • What: 3 mile leisurely walk
  • When: 9 am registration / check-in and 10 am walk
  • Where: Stonebridge Church, 1 Stonebridge Church Drive
  • Cost: No cost, registered walkers receive a T-shirt
  • Contact: 713-942-2572
To register as part of Team Anderson, and to make a donation to help fight this disease, please visit https://www.active.com/donate/twl2010
For more information, please visit the ALS Association at http://www.alsa-houston.org/
Thank you from Team Anderson!!!

Sunday, October 3, 2010

The Biggest THANK YOU ever

What a weekend this has been. The weather is cooler, the sun is out and we have alot to be thankful for. It amazes Peter and I on the generosity of our friends and family who are in this fight with us. We knew that we had support but we didn't know just how much until we needed it.

As we went down to Houston for our 3 month check up, Peter's sister, Jane, came down from Fort Worth to take care of the house and care for our dog, Winnie. It was such a relief in knowing that everything on the home front was taken care of. Thank you, Jane for taking time out to come and take care of us. We so appreciate it.

Over the weekend on many College Campuses there were ALS walks, the picture above is of Stephanie and her friends (Kathleen, Ryan, Stephanie, Erin and Cassandra) at A&M joining in to make a difference on a walk for ALs. We so appreciate their support and for taking time out on a Saturday to get up early and fight for this disease. Another one of our family friends, Mallory Thomas also recruited her sorority sisters in an ALS walk at the University of Arkansas. When we get the pics, we will share them with you. We so appreciate you walking in honor of "Mr. Peter".....it means so much to us.

We also received an email tonight from Stephanie's precious and previous high school swimming coach, Vanessa Gnatzig who informed us that she was honoring Peter in her Ironman Triathlon in Florida this November. We were blown away by her love, dedication and determination. We always knew she was a special person, this just clinches it for us. We wish her all the success in her endeavors.

And when we thought it couldn't get much better, our neighbors, Jeannie Drake and Karen Eckhart are establishing a "Team Anderson" team for the ALS walk in The Woodlands on November 6th at the StoneBridge Church at 10:00am. They have set up a website for donations to this cause and are notifying friends and family on walking and supporting the ALS cause on this special day. Thank you so much.

We couldn't have had a greater weekend with the great news from the Friday appointments with all the Doctors at Methodist Hospital and then to have the overwelming support and love from our friends and family. We are speechless. It does take a village to get the message across and we have the support it takes to yell it from the mountain tops.....thank you to everyone for your continued dedication and hope......we are living on it.

Big hugs, DeeAnn and Peter

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..........

Thursday, July 1, 2010

A Day of Reflection: The Day After

Well this has been a rather different day since our world wind days at Methodist. Stephanie and I woke up at 3:30 this morning and left at 3:45 for the airport. Amazingly, there were tons of people at the airport and thanks to my friend Barbara for giving us the heads up on the crowds, we arrived almost 2 hours before Stephanie's flight to Maine. The flight was on time to Newark and thankfully with the short layover, her Portland flight was late getting to the gate. Her luggage made it and all is good with the world. She arrived in Portland only 30 minutes behind schedule which is awesome.

We are extremely proud of Stephanie! Peter and I asked her for a few weeks of her Summer to complete 2 online courses at Lone Star Community College and to plan and participate in a 3 week internship at St. Luke's Hospital in The Woodlands with Dr. Christina Frome MD, an OB/GYN......Stephanie completed the courses with A's in both courses and had the most amazing and memorable time in the OR with Dr. Frome and the other surgeons. So off she goes to spend time with her boyfriend, Ken and his family.....So excited for her....she so deserves it.

Peter went to work this morning and I walked Winnie and ran my mileage and walked with my neighbor and friend, Jeannie. Answered a few emails and reflected on the last couple of months of our new journey Peter is embarking on. I feel like I am in a fog but it was a good weather day to reflection on this time in our new lives now.

Things I know for sure:

1. Dr. Appel wears a different bow tie each day to work.

2. The ALS team that Dr. Appel has put together at the Methodist Neurological Institute are the BEST in the world.

3. Do your homework when assigned.

4. Appreciate every day you have with your spouse, your loved ones, your friends and the people you come in contact with each day because today is a GIFT.

5.Accept the love and willingness for your friends to help you even if you think you can do it on your own.

6. Look for the miracles in your life that have touched you so deep that you have taken them for granted.

7. Make sure you have bathed everyday because you never know when you will have a gold star placed on your forehead.

8. Make memories everyday......

9. Know that God will lead you down the right path and he knows what he is doing so just sit back and enjoy the ride.

10. Love the one you are with forever and ever.

These are by no means the end of my list or in any order according to importance. In any given day, you could mix them up and prioritize the differently and your outcome would still be the same. We hope through this personal ALS blog we have set up that you can feel the love and support we have for each other and will continue down this different path together forever. Peter and I were meant to be together since we were in the rip age of 14 and 17 and with the beautiful "masterpiece" of our daughter, Stephanie we will remain strong and fight till the very end. Thank you so much for joining our team.

Our next set of clinics won't be until October 1, 2010 but we will write in our ALS blog about every week with updates and new findings. So please check it and see what is happening. Thank you again for all our followers and for the ones that haven't signed in but are reading and keeping up with our progress. You know the saying, "it takes a village", that is a true statement.

Love to you all, DeeAnn

Wednesday, June 30, 2010

WE ARE HOME !!!!!! Day 3 Wednesday, June 30, 2010

With God's grace and strength, we made it through these 2 1/2 days of intense testing, meetings with Dr.'s, conversations with other patients with ALS and their families, and a positive outlook on a horrible disease. How can you beat that? Again, we are truly blessed to live close to the most amazing Medical Center in the world. Confirmed again today that Peter is definitely getting the BEST care possible.

Today we were told that this would be a short day, 1/2 day but it ended up being longer than yesterday. Peter and I came up with questions that I wrote eagerly on my pad of paper. So my homework had been completed for Dr. Appel. We met with Sharon again this morning to confirm that Peter would be joining their clinical trial. She was so excited. Then after Sharon's brief visit, the Occupational Therapist, Joanne Ripple and her assistant Ashley came in with energy and happiness. Asking us about our living layout and potential obstacles that could pose a hazard to Peter in his daily routines. We are so lucky we have the home we have. Perfect for Peter with the master bedroom downstairs and tile almost throughout the house. No need for Peter to venture upstairs so it is perfect for our future situation. And we love our house.....we are so lucky. Peter was given a prescription for a handicapped parking sticker which will come in handy for work. He has ordered a rolling briefcase that will help him in mobility and ease with his walking. Our main objective in this disease is to eliminate any potential for Peter to fall. We are headed down that path to make sure we have done everything possible for him to accomplish this.

Then it came time for our final visit from Dr. Appel. He wore a cobalt blue bowtie with red hearts on it as he came into the room. If you can picture what it would be like if Jesus came walking into your room, that is the image you need to have as Dr. Appel comes in for his consultation. Surrounded by his "people" again, he was elated that we had completed our homework and had written down our questions. Some of our questions were answered by the Occupational Therapist but we had a strong 9 questions to ask him when he asks for questions. Dr. Appel put Peter on Rilutek and then wants him to take 1,000 mg of vitamin C, 1,000 IU of Vitamin E twice a day, beta-carotene: 25,000 IU once a day and then melatonin: 3 mg 20 minutes before bedtime. WOW!!!! He also got a pneumonia shot today and gave blood again. Poor guy, he has been tested to the max and poked and stuck alot during these last couple of days but has been a real trooper through the whole thing. So proud of him. Dr. Appel then asked for questions, I was ready and showed him that I meant business and took his homework challenge very seriously. He was impressed, I must say. After about 10 minutes of me asking and he answering he awarded me with a real gold star sticker that he stuck to my forehead. Of course, like I am with test taking, I was sweating and nervous and had to go to the bathroom but I stood as he awarded me the gold star and kinda bowed like I was being knighted.....ha! Not really but that sounds really good. He did actually stick it to my forehead and I wore it proudly throughout the rest of the day.

Dr. Appel wants Peter to still go to his General Practitioner up in The Woodlands unless that Dr. wants another opinion or doesn't quite know how to handle a medical condition because of Peters diagnosis of ALS. That is a good sign, we felt. He was releasing us to the Dr.'s that started this whole process so we felt we were in good hands with Dr. Appel's findings. We made our next visit with Dr. Appel for October 1st where we go back downtown to meet with all the Dr.'s we met in 2 1/2 days in 1 day.....WOW! That will be a busy day....I think we will stay downtown the night before we start that full day.

After Dr. Appel left we met with Clara and Karen from the MDA-ALS Foundation, so very helpful in giving us information in websites and go-to groups to find out information or equipment that we will need in the future. They mentioned support groups that we could attend but honestly at this moment, we have the best family and friends support group anyone could ask for. Maybe down the road but not at this time in our lives. Karen, Clinic Coordinator for MDA-ALS is our key person that Peter and I call if we need ANYTHING. She will find the answer and help us in anyway she can. She is so well connected it blows your mind. We love Karen.

Oh, my brain is running a mile a minute and almost fatigued but I forgot to tell you, our followers and it is VERY important but Dr. Appel did say today that because of Peter's amazing results on his breathing tests and his good physical condition and his continued strength in his body that he is NOT a candidate for an ALS patient that only lives 1 or 2 years......we both looked at each other, our shoulders went down and tears came to our eyes. We winked at each other and knew we were going to be just fine. Awesome NEWS......we couldn't ask for anything better in this situation.

Our next visit was with Dr. Holland, our Pulmonologist, who reminded us of Dr. Bailey on Grey's Anatomy.....she was incredible and so personable. She was so taken back with the fantastic results of Peter's breathing scores and only suggested sleeping positions to rest the diaphragm when he was sleeping. She talked to us about a possible career route for Stephanie in nursing when she saw her picture in the frame we had brought from home to decorate our hospital room. She gave us great information to pass on to Stephanie about Physicians Assistant (PA) vs Nurse Practitioner (NP). She was incredible.

Our last visit was from Wendy Schell, our Senior Physical Therapist. Knowledge just oozed out of her. Hand picked, I am certain by Dr. Appel, (which I am sure they all are but she knew her stuff and we just listened with amazement). She wrote a prescription for a new custom orthotic for Peter that he will wear in his left shoe that is made out of titanium. We will get that filled asap. much better than the one he has now. She explained to us in "our terms" that Peter's body is slow and more deliberate now. Walking that could be taken for granted three months ago needs careful thought and planning when maneuvering around in our daily lives. In easier words, it is time for us to slow down and smell the flowers, take it all in and not be in such a hurry. We can do this and are happy too. With the information we have received in the last 2 1/2 day, we are now up to the tasks and are ready to proceed.

Our day finally ended at 3:00 and then off to the hotel to get our belongings and to the car to come HOME. It means alot to be home. Stephanie and Winnie greated us at the door with hugs. We were so happy to be home. Now we put all of the information that we have been given to work in our home and in our daily lives. We are blessed and we know it.

This will probably be the end to the long and forever blogs for at least a while. Stephanie leaves to go to Maine to see her boyfriend, Ken and his family for a week. She received news today that she was accepted into the Allied Science College at Texas A&M today, so all is good with the world. Nursing is now on the front burner. We are so proud of her. All is really good with the world in our book.
Thank you again for your time and support you have shown us during these past several months and especially in these last 2 1/2 days. We had a wonderful dinner waiting for us this evening when we got home which was such a treat. Thank you! All of your calls,emails and texts were just what we needed to keep us going these last few days. You guys are the best. Better get to bed, Stephanie's flight is at 6:00am tomorrow morning, I will take her at 4:00am...Love is an amazing thing.....

Love you all, DeeAnn

Tuesday, June 29, 2010

Dr. Appel Wore a Bright Polka-Dotted Bowtie Today

Day 2: Tuesday, June 29, 2010

What a day! Sometimes I think 2 1/2 days is not enough time to do the testing we need, get the questions answered and to see all the Dr.'s we need to see but it all has worked out and it was a very productive day. Starting at 8:15am, Peter had the Dr. of NeuroPsychology, Dr. Dulay administer a 2 1/2 hour test with the help of his PhD student from U of H that tested his cognitive faculties. I would have failed.....I was told to leave the room while the test was being administered. I was so thankful....you know me with tests....my stomach started to hurt, I started to sweat, I felt like I was about to take the SAT and I had to go to the bathroom and I wasn't even the one taking the test. I am so glad Peter is a wiz with all of that brain thinking stuff. Passed with flying colors.

Stephanie and Brittany (Steph's awesome friend) came to Methodist today for about 4 1/2 hours. Peter was so happy to see them both. It really lifted his spirits, as it did mine. It is amazing how the young adults can foster such energy and hope when they enter a room. It was fun having them here today with us and to eat lunch with them. We had a visit today from the Clinical Social Worker, Rebecca Axline...she was so personable and made us feel very relaxed. She talked to us for about 10 minutes, she was very helpful and accommodating.

Peter then met with another team member of Dr. Appel's, Sharon, Director of Clinical Research.....she took Peter through several tests like navigating a wheel chair, walking up and down the stairs, squeezing a grip machine, putting small items into a tiny pegged hole and adding a washer and a bolt, pinch tests and probably more but I forgot...the reason for these tests are to see where he is now and then when we come back in 3 months to see if he has stayed the same or slighly declined. They are measuring his efforts as well as his strength... Then Sharon lead us through the clinical trials Dr. Appel wants Peter to be apart of. Very informational and thorough. But before she could get done with the research behind these amazing studies, Dr. Appel arrived....

Dr. Appel wore a bright polka-dotted bowtie today. Came in with all his "people". He got to meet Stephanie and Brittany, of course. Dr. Appel put Peter through the exact strength test his chief Resident did yesterday. He is a very strong man, who knew. And I stand corrected he is not in his early 70's, he is 77. Amazing. Dr. Appel applied great force to Peter's joints and limbs with his body and asked Peter to resist him and then he gave his PA a rating from 1 to 5. 5, with 5.5 being the best. There must have been 40 to 45 different strength positions and out of those his chief Resident only got 1 wrong from yesterday.....I guess when you are taught from the best, you do the best.....

Then as the tests concluded, Dr. Appel turned to Peter and asked him if he had any questions....we are really on information overload so Peter didn't really have any at that time. Then he turned to me and asked me the same question, I asked him one question and he looked upset with me that I didn't have a list. So, needless to say, Dr. Appel gave me homework. I will have so many questions for him tomorrow he will wonder what hit him. He is a teacher of ALS and he wants his patients and their families to use and abuse him with questions so we can be knowledgeable in everything that ALS is, will become and what will happen in the future. Dr. Appel oozes with passion and determination for finding a cure for this disease. You see it the moment he walks into your room. He has built his practice on coming to the patients instead of his patients coming to him. Amazing......again I say it but it is so true. We are in the right place and I thank God that we live so close to the Medical Center.

Then it was time for Dr. Appel to move on to the next patient. We said good bye and I told him I would do better tomorrow and he said that he was counting on it. Just wait.....I thought to myself.

Then Sharon stayed to tell us about the clinical trials, and Peter is ready to sign up. We sign the papers tomorrow morning and he will begin in a couple of weeks. We were under the impression that Peter's blood would be inserted into healthy mice but that part of the testing has already been done. After very encouraging results from the testing in mice, five patients (4 men and 1 woman) have recently completed stage 1 of the clinical trial. Peter will be 1 of 12 people to participate in stage 2 of the clinical trial. Based on the encouraging results from stage 1, we are now going to try a revised combination of drugs that is designed to slow down the progression of ALS. This is very exciting for Peter and for all of us. So on we go to help find a cure for this horrible disease.....Peter will be the one to do this and we are so proud of him. We also found out today that patients with higher cholesterol and that have ALS do better than if they had lower cholesterol. So we have to rethink the Lipitor now....isn't that interesting.

Well I have said enough and I promised I would make this one shorter and I think this post is longer. We have 1/2 day tomorrow with the OT/PT visits and the Lawyer, and Pulmonary Specialist. Sounds like a full day to me. We are spent but well informed and ready to make our plan for the rest of our lives. We thank everyone for reading our blog and for your prayers, funny stories and just being interested in our lives. We hope you are all well and thank you for your love and support.

Love to all, DeeAnn

Monday, June 28, 2010

Monday, June 28, 2010 - We met Dr. Appel

It all began at 7am this morning. After our 6 minute walk to the 11th floor of the West Pavilion, we arrived with wide eyes and an unknown feeling. Everyone we met and talked to today was so helpful and nice....Methodist sure knows how to pick their employees....we are grateful for that. We are definitely in the right place.

We were assigned a room, on an outpatient basis, where we were given our own nurse. Then on our white-out board in our room, Rose Marie RN put our itinerary for the day in black and white. Listed Peter's vitals, what tests would be run and who we would consult with during the day. The list was long and intense and kept us busy throughout our 8 1/2 hour day today.

We met with the Chief Resident to Dr Appel to go over personal information,to complete a strength test and memory/speech analysis to get ready for the visit from Dr. Appel. We did 2 tests that we had done about 7 weeks ago but they were more extensive and done with better accuracy and precision. Now we know we are in the right place.....professionals at their finest.

Peter underwent a Pulmonary Function Test and literally blew the needle off the chart. We were so happy and were jumping up and down for this wonderful exhibit of grand lung compacity. The Pulmonary Dr was so happy with her findings. As many of you know, this horrible disease, in the end affects the swallowing and breathing compacities of its patients, in our case, we were sitting pretty without any sign of this taking place. Yea for Peter.....happy dance.... So after that experience, we waited for about 30 minutes.

Then we got to meet the man that we had been reading about and so blessed we made it into his program. Dr. Appel, a bow tie wearing, distinguished man in his early 70's with a big following. He was so personable and eager to get to know us, especially Peter. His chief resident, Usha Thapalia gave a 5 minute overview of the recent tests given, history and findings she had collected on Peter. Dr. Appel had his own notebook and jotted down information that Dr. Thapalia was relaying to him with a fine tip black sharpie marker. Listening the entire time, soaking all the information in. He confirmed our diagnosis that Peter does in fact have ALS. However, with the A+ results from the Breathing evaluation, Dr. Appel felt Peter was in a very good position. We all began to cry and looked at each other with the best news we have heard in 3 months. Peter has weakness on his left side which makes his left leg clump when he walks. When he wears his orthotics in his shoe, it is alittle better but still uneasy and a possible threat of tripping when he walks is a scare for Peter at this point. Dr. Appel said that we don't want to fall because not only do we have to heal from the fall but getting injured makes ALS worse and it progresses faster. We definitely want to avoid this. We meet with the PT/OT tomorrow morning, so some of the questions will be addressed.

In the end of our 25 minute conversation with Dr. Appel, he wants Peter to be a part of his Level II clinical trial study that involves studying certain specific cells from younger ALS patients in mice. Peter, of course said he would be happy and honored to be a part of his study. Dr. Appel said that this was leading edge of clinical research. This study may not help Peter but it will surely help to hopefully find a cure for ALS. Stephanie is so proud of her Dad. The time for Dr. Appel had expired and he told us that he would see us tomorrow morning. We can't wait to see him and to see what color his bow tie will be tomorrow. Ha!

After lunch, we met with a Dietician and then the Speech Therapist. Peter passed with flying colors in both these departments. We like acing these tests. Go Peter!!!!!

We finished around 3:30, a long day but very productive. Thank you so much for all of your emails, phone calls and thoughts. They are greatly appreciated. We don't have to check in until 8:00am, we will definitely get a better nights sleep. So sorry for this long post on the blog. Lots of information happened today. Thanks for being a follower.

Hugs to everyone, DeeAnn

Sunday, June 27, 2010

All Checked In...

All Checked In......we are here! Stephanie, along with Brittany are holding down the fort at home. Winnie is wondering what is going on. Stephanie and possibly Brittany will come on Tuesday for a visit. We are unsure about what will take place these next 2 1/2 days but we have come equipped with care packages, cards, run off emails, books and photos for the duration. We couldn't be more blessed to have such warm, loving and special items with us during this time.

We made a trial run from our hotel to the Neurological Institute in the Methodist Hospital. Lots of corridors and hallways but we think we can find it tomorrow morning a little before 7am. We went and ate at Niko Nikos, Greek restaurant, and had hummis, pita bread, kalamata olives, the biggest slices of feta cheese and a chicken schwarma. We were in heaven.....this restaurant was on Diners, Drive Ins and Dives. So yummy, we even have some left over for tomorrow.

Reality has set in and we are about to embark on something that is totally unknown to us. Stephanie has printed a 5x7 framed picture of the three of us and made cards for her Father for our entire stay here in downtown Houston. She is a very strong young lady and when we left home this afternoon to drive down, we all were trying to put our happy faces on. We need to try alittle harder because our tears were running down our so called happy faces. It was tough....I don't think that part will get better.

Tomorrow is a full day for Peter. We are under the impression that Peter might have to repeat some of the tests he has already done. We talked to Dr. Appell's Resident early this afternoon and she is thinking the spinal, the brain MRI, the nerve conduction function test, and the electromyography might have to be done again. Peter is a great sport and says to me, "we will do what we need to do." "It will be okay."

My hope is to send a new blog each evening while we are here. We would love to hear from everyone of you guys. Please comment if you have a moment. Tell us something funny or just tell us anything. We want to know what is going on in y'alls lives. We so appreciate all of your support, prayers and thoughts. Our whole family couldn't do this without it.

Off to put my pj's on and watch a movie with Peter. Early day tomorrow.....

We love you, DeeAnn

Tuesday, June 22, 2010

Less Than One Week To Go Before We Go To Methodist

Dear Family and Friends,

It is less than a week before we start our program with the Neurological ALS program at the Methodist Hospital in downtown Houston. We are ready to get answers to all of our questions and develop a plan for the next chapter of our lives. Thank you for all of your prayers and good wishes and thoughts. We are so blessed to have such a great following of family and friends.

I will post regularly starting Monday, June 28th......I want to thank Missy Thomas and Tracy Strickland and of course Megan and Josh for their marriage celebration because without them, we would not have gotten some of these great pictures that we have used on our blog....

Love to everyone, DeeAnn and Stephanie
(Peter's in California)

Thursday, June 17, 2010

Team Anderson Mascot

This is Winnie, the Team Anderson Mascot. She is already doing her part by donating blood today. We invite you to do the same!

Wednesday, June 16, 2010

Team Anderson

This is Team Anderson. Actually, this is just the Core Team. We are hoping the Extended Team will grow to be much larger as we fight to Beat the Hell Outta ALS. Come join our fight!