The Highest Hurdle Page 3

  Endless gratitude from MaryFran

  By Maggie Kromm – 10/20/2014

  Thank you to all for working towards “Striking out ALS.” Thank you, Northern Lights, Northern Michigan Medical Society Alliance, event sponsors and donors! What an amazing event! A special thank you to Kim Wroblewski, Deanna Beaudoin and Holly O’Donnell for spearheading this event! When I said no spaghetti dinners, I didn’t even dream you would do something like this. My family and Amy’s family thank you!

  As a PhD in Exercise Science I began research shortly after my diagnosis, after doing some research on ALS, I stopped. Too depressing… No cure, no cause, 3-5 years to live after this diagnosis. I only realized conventional treatments were not working. As a subject in a study of my own, I’ve selected unconventional treatments. It only makes sense that through conventional testing such as blood work and some unconventional measures we may find out what is lacking or weak, or perhaps in my case, one piece at a time halt this disease, cure this disease or extend my quality and quantity of life, God willing! See what I’m doing, much of which is NOT covered by insurance.

  FIRST, I ASSEMBLED “MY MEDICAL TEAM”

  - Ed Linkner, MD-Family Medicine/ Holistic Alternative medicine-Ann Arbor

  - Greg Putalik MD-Family Medicine/ Holistic Alternative medicine-Harbor Springs

  - Stefen Feig, DO-Family Medicine (The “Dr. House” of my team)-Santa Cruz, CA

  - David Perlmutter, MD, FACN Board Certified Neurologist and internationally recognized leader in nutritional neurology-Naples, FL

  - James Tenner, MD- Director of Neurology at University of Michigan

  - Dee Harris- Integrated Nutritionist at the Perlmutter Medical Center-Naples, FL

  WHAT ARE MARYFRAN’S SYMPTOMS?

  - Muscle weakness/aches

  - Muscular twitching/Fasciculations

  - Fatigue

  - Speech delay

  - Bell’s Palsy

  WHAT AM I DOING TO HELP RELIEVE MY SYMPTOMS AND FIGHT ALS?

  PRAYER—With a diagnosis like this you turn to God or shut him out. I have surrendered my life to him. I offer my pain and diagnosis to others in pain or going through difficult times. God is not done with me here yet. I believe I am to be part of the cure to this disease.

  KETOGENIC DIET—My diet immediately changed upon my diagnosis confirmation at the Perlmutter Medical Center. No grains, NONE, only nuts & seeds, vegetables and lean meats of all sorts and a half of piece of fruit per day. No nitrates, additives aspartame or MSG. Organic foods locally grown preferred. (A special thank you to Coveyou Farms!) Due to discovered food allergies through this process, no consumption of eggs, dairy or chocolate have been added to my no consumption list.

  MEDICATIONS I have opted to not take the only FDA approved medication for ALS (Reglan) as it only offers 2-3 months and can cause potential liver problems. I am taking Tamoxifen ($10 copay), Progesterone ($10 co-pay), Glutathione IV infusion ($600 monthly out of pocket).

  HOMEOPATHIC REMEDIES ($6,000 paid thus far out of pocket) Cell salts, numerous tinctures for metals, parasites, environmental toxins, identified as needed by a non-approved in the USA device called an advanced thermal screening process. Adrenal capsules and Smart Silver for immune system support are also taken.

  NUTRITIONAL SUPPLEMENTS ($1,800 monthly out of pocket)

  - Ultra Nutrient-antioxidants and phytonutrients

  - Ultimate Antiox full spectrum

  - Magnesium citrate

  - Low dose aspirin

  - Super Ubiquinol CoQ10-enhanced mitochondrial support

  - S-Acetyl Glutathione synergy

  - CuraPro-antioxidant

  - Neurochondria

  - Inosine-building block for DNA and RNA

  - Gaba

  - Nrf2 Activator-Perlmutter developed/antioxidant and detoxification

  - Serine

  - Trehalose

  - A-AKG Powder

  - Nutrilite Intestiflora 7-probiotic

  - Nitric acid

  - Omega flax seed

  - MCT oil

  - Vit B12

  - Vit D3

  - PROmega DHEA

  - BrainSustain-supports mitochondrial energy production, neurotransmitter production & cell membrane integrity.

  HYPERBARIC TREATMENTS ($135 per session- over $8,000 paid thus far out of pocket)

  Hyperbaric oxygen therapy, also called HBOT, is simply 100% oxygen administered to the entire body at greater than normal atmospheric pressure.

  PHYSICAL & OCCUPATIONAL THERAPY Thank you to the Budnicks of Orthosport and Dr. Wroblewski’s Hand Therapy of Petoskey clinic for treatments, exercises & the H wave!

  REIKI AND CRANIAL SACRAL THERAPY & ACUPUNCTURE - October start

  November update

  By MaryFran Kolp – 11/21/2014

  Hello everyone! Just wanted to give you a little update! Thus far I am doing very well. I am continuing my supplements, looking forward to a few more hyperbaric treatments, and I’ve also begun acupuncture and cranial sacral therapy. This has been an amazing experience and really helps me. In addition, I truly believe, diet and exercise have made a big difference in my health. I am still on a strict ketogenic diet. That means I eat no grains, but I do consume a lot of organic meats and plenty of vegetables along with many nuts and seeds without any limitations or portion sizes needed. As for what’s new, Kim Wroblewski and myself are having the honor of meeting Amy Janisse, who has ALS in Indian River tomorrow. Some of the funds earned from the ALS strikeout fund-raiser were allocated to her also. We are looking forward to our meeting. In addition, The Medical Society Alliance will be adopting her family this year. They are very grateful!

  Also new, we are happy to report that the Kolps are closing on a new home in Petoskey and we can’t wait! It will be so nice to be close to school and town. We won’t be moving in until late February or early March due to some of the renovations that will be taking place in our home. We are so blessed to have the rental opportunity of a beautiful log home this winter from Lynn and Blaine Rawson. We are very grateful.

  Also, we want to thank you for all the wonderful meals we have been receiving from the organic cooking club from Julienne Tomatoes and from families personally. We are so appreciative! Well, this is just a brief update, we wish everyone a very happy and blessed Thanksgiving, and may you have a safe and restful holiday! Hugs and prayers until we meet again! Love, MaryFran

  Since they lived out in the country, about twelve miles from town, they decided that they needed to move into town to be closer to the high school. Their home sold quickly, and since they had not found anything, friends of ours offered their vacant home for their use. When they finally found a home, they needed to do some renovations before they could move in. It was a great location, walking distance to the high school and centrally located. MaryFran swore that this was another divine intervention. Houses do not sell that quickly, especially out in the country where we live! The house they found was almost directly across from Petoskey High School—another blessing.

  December update

  By MaryFran Kolp – 12/20/2014

  Merry Christmas! I just had a checkup and it appears I’m doing fine! Still weak but the ketogenic diet, supplements and treatments are working to slow or hold off some symptoms! We’re so blessed this Christmas season! All the support has been such a blessing! We have no words for it! We’re enjoying the rental we are in! It is a beautiful huge log home! And we have enjoyed entertaining in it this holiday season! Recently we purchased a home in Petoskey and are so looking forward to being closer to the high school for all our kids’ activities. Forgive me for not sending Christmas cards this year, but we will be sending our new address in the new year! Hugs to all of you and blessings!

  January update

  By MaryFran Kolp – 1/9/2015

  Happy New Year! One week and I’m off to Florida for 10 days, I will contact Dr. Perlmutter and his nutrition staff! I’m still on a strict ketogenic diet! Thanks to Terri Reynol
ds my sis in-law for all her support in cooking. Thank you everyone for your blessings and good wishes during the Christmas season. I am doing quite well. I love my medical team! Thank you Dr. Putalik, Flora Waters and Helen Durulo this month! I’ve added homeopathy and cranial sacral therapy and acupuncture to my routine! After an intense detoxification program, prayer and now energy work I have been blessed with making progress, positive progress! My motto remains “whatever it takes,” and I don’t mind hard work! Also, I’m hoping Maggie Kromm is still willing to help me document my journey, my story. I do hope it can help others and their families on their journeys. Oh, I also want to thank those of you that purchased be brave bravelets, which are bracelets that fund the cause! At bravelets.com select MaryFran whatever it takes! We were just awarded $170 for your purchases! Thank you! We’re grateful it helps towards my alternative healthcare costs! Like I always say…one day at a time…it’s all we have anyway! There may be many doing better but be sure some are doing worse! Treasure your gifts and use um! Hugs to all of you! Make this a new year not to forget! I am!

  Heading to Florida

  By MaryFran Kolp – 1/17/2015

  Marie Law and I are jet setters for Florida! Blessed to visit Jim and Mary Hammond, my folks and Roger and Barb Kromm for a few weeks while thawing out and having medical follow up appointments! Megan and Genevieve and Maggie Kromm will be joining us along with my beloved hubby too! Many thanks to all who are making this possible for me! Especially, David and Maria for the condo! Looking forward to all of it! Especially the sun! I’ll post updates! Enjoy the snow while we are gone!

  Florida update

  by MaryFran Kolp — 1/25/2015

  Sunny and 70! Everyone should be here! Here’s the update, I have been blessed with good weather, good friends, great accommodations and fantabulous meals by many! A special thanks to Marie and Maggie for making this all possible! They were excellent nurses on this journey! Marie would let me stay up and watch HGTV and have a glass of wine until the wee hours of the evening! Maggie made sure I was in bed at a decent hour but gave an excellent shoulder massage! She should go into business! I did have a follow-up doctor’s visit with my integrative nutritionist and it was very successful. Also, a very well-respected integrated physician from Santa Cruz, California has been assisting with my case. We are doing some additional testing blood work and other stuff based on some of the new research out on ALS. Dr. Stephen Feig and Dr. David Perlmutter…let’s press on for a cure! In addition, I have some new pea protein shakes and recipes to aid me in maintaining my weight! So, it will be interesting to see the results of this testing and see how the dietary changes assist me. Maggie and Genevieve and Megan arrived 2 days ago we have had fun in the sun, and plenty of shopping, and again some great meals and great laughs! I’m so glad they were able to come down and thaw out with me. I’ve been blessed to visit with family and friends down here including my folks, Jim and Mary Hammond, Barb and Roger Kromm, Kelly Prue! Hugs to all of you! Andy arrived today, ready to thaw out too! I’m so glad he’s here! I’ve missed him! Thanks for holding up the fort at home! I miss you Danny! I’ll see you Thursday! Good luck in your basketball game on Tuesday! We’ll be watching! I’ll keep all of you posted! Hugs and blessings!

  Returning home from Florida

  By MaryFran Kolp 1/29/2015

  All good things must come to an end, so more good things can begin again! I’m heading home…going from palm trees and sun to pine trees and snow! Just sitting here on our drive upstate counting my blessings! I can’t wait to see my teenagers and my friends! I missed y’all. Your words of inspiration during my time away were very much appreciated and prayers felt! It was nice to have Megan and Genevieve for a few days.

  Big month for the Kolps coming up! Cleaning and getting stuff pitched and cleaned for the move into our new house at the beginning of next month! I’ll keep you posted when we’ll need help! Thanks Dan Cleary our contractor that sticks to schedule! We’re so blessed!

  Next steps regarding ALS treatment… I will be making a trip to California soon for additional testing and possible treatments. I will know more in the next few weeks. While in Florida, Marie and I discussed the possibility of a lip sync ALS fund-raiser. Upcoming treatments may be costly, so let Marie Law know if you are willing to participate in a lip sync fund-raiser to help offset cost, as again a lot of these interventions are not covered by insurance! Ohhhhh and yes, the only way Andy got me on the plane to come home was to plan spring break!! Hahaha a return to warm weather! We’ll be in Fort Myers Beach over break! Part of this destination choice is I have a follow up appointment with Dr. Perlmutter then. Well I just can’t end without thanking everyone that made it possible for me to thaw out and most importantly those that cared for my babies while I was away: Terri and Craig Reynolds; Carol and Carl Kolp; Kim Wroblewski, Shelley & Alan Budnick, Kim Scholl, Becky Tanis, and especially my husband… For being my rock! A special thanks to the Julienne Tomatoes cooking club members, Maggie Kromm, Lisa Leavy, Val Meyerson, Jennifer Waldvogel, Deborah Gagnon, Lynn Rawson, Deanna Beaudoin, Ann Frank, and Kim Wineman for having meals prepared for us for our return! And special thanks to, Eberharts, Ledinghams, Whitmans and cooking club members for your purchasing of these organic whole foods for my family! I know many are on the list to support through the summer! Thank you! Yes! This is part of the reason my kids are so tall!!! Thanks Julie & Tom too!!! Well time to sign off we’re almost home! Love you all! Keep us in your prayers and hug your family tonight in thanks!!! What blessings we all have that we don’t always acknowledge… be grateful!

  FRANTABULOUS FRIENDS

  Our friend Deanna Beaudoin found a book—called Share the Care—that helped us form a support group for MaryFran. Several of our friends read it and we decided that we could adapt it to fit MaryFran’s needs. MaryFran was known for making up funny words, and she always used to say, “That is fantabulous.” We decided to call our group Frantabulous Friends. The following was her entry after our initial meeting.

  Share the Care meeting Success

  By MaryFran Kolp 2/4/2015

  I was surrounded by a group of beautiful women today that have initiated a willingness to assist me and my family in the event my health status warrants it! A special thank you to Kim Wroblewski and Maggie Kromm for hosting and facilitating this get together. These ladies discovered a book/program to assist families in caring for a loved one with an illness while not compromising their own families. It is done by sharing the load with many willing helpers. Some caregivers have big jobs, such as facilitating a monthly schedule, others a simple meal preparation and others assisting in transporting my kids, just to name a few. Being the smart, proactive, group of women I’m so blessed to be part of we kicked this process off today! If you were at the meeting I thank you, your being there means more than you’ll ever know! As you saw firsthand with laughter and tears this has been a blessed journey with what I believe to be a divine purpose! I shared my ketogenic diet, talked about supplements, shots and glutothione IV pushes, along with my symptoms, acupuncture, cranial sacral therapy and Hand Therapy of Petoskey and Orthosport PT, and next steps for travel and treatment. No worries if you didn’t know about the meeting or couldn’t make it…you can check out the book on your own called Share the Care or contact Maggie Kromm, Kim Wroblewski or the SFX school office where you can check out the paperwork and share what your talents might be if you were to choose to assist if or when the time comes! It’s better to be prepared up front. Those of you with other family members or friends with an illness consider this book! I pray for all with illnesses, a special prayer and blessing to my niece Dana who’s experiencing some health issues, but her doctors are working hard to get her well! Please continue to keep her in your prayers too! Hugs and blessings to all my Frantabulous Friends!!!

  During the meeting, she was overcome with emotion by the amount of support she was getting from her friends. We had everyone fill out forms, stating what their level of contribution woul
d be. It included what they were good at and were willing to do. We asked for people to “captain” a week with another person. Our beginning group had eighteen captains. The captains were in-charge of getting other people to do whatever work that needed to be done. We split into groups of two to three people so that we would have to be “on” once every seven weeks or so. Other people offered to run errands, clean, bring meals, do laundry. As her illness progressed we would change our group as needed. I sent out the first schedule in May of 2015. Each schedule would be for four to six months. In the beginning, there wasn’t a lot for us to do. Also, Andy did not have a traditional nine to five job, so we had to be available for evenings, nights, and weekends. As MaryFran progressed, our duties increased, and the group had to make changes and evolve. Each Friday, the captains for the next week would check in with the previous captains to see what was needed for their week. Usually, if Andy wasn’t working he didn’t really need us to come in to help unless he needed to run to the bank or the store or needed some much-needed “me” time.

  Our group initially followed the Share the Care book. But we found a different way to support MaryFran that I think everyone in our group would agree worked for us. Here are some things that made our Frantabulous Friends work.

  You need an organizer and implementer. This ended up being me. I will not sugarcoat this. It is a lot of work, especially toward the end. My phone blew up quite regularly with texts, emails, and calls. Fortunately, I think I was able to manage it and my family life fairly-well. I work for my husband and make my own hours. My employees knew MaryFran and were extremely understanding. My job was to send emails and updates to the group, expressing MaryFran’s wishes and creating the captain schedule. I was also a captain and emotional-support person for MaryFran. I was the liaison with Andy and the kids. In retrospect, I probably took on too much, but I usually do in everything I do.