More supplements & weekend update
Journal entry by MaryFran Kolp — 7/19/2015
We had a great weekend with family! We were downstate for yet another basketball tournament for the parallel 45 team Danny is part of! We stayed at my sister and bro-in-laws (Natalie & Josh’s) home in Northville! Then Nat and Josh, Ethan my nephew, Uncle Joel and both Grandparents joined us in cheering on the boys! The team did well. Won one and lost one, this put them in the silver bracket! Then the boys won 2 games and lost in the finals in that bracket! Great job boys! It was a great tournament! A lot of college coaches watching predominantly the upper-class courts. Coach Beilein, Coach Izzo, others from Kent State, Toledo, Oakland, just to name a few. It was pretty cool. Some great ball and players! Off to Indiana this Wednesday! Another big tournament and recruiting mecca!
I also had some hyperbaric treatments this weekend. 3 treatments in two days. This is a process where oxygen is infused into all of your cells, tissues and organs. I watch movies while in the glass encased chamber for 90 minutes. After a treatment once again, I was whipped, but simultaneously I felt better. My symptoms become more isolated. More under control. My speech is quicker, my muscle twitching subsides, weakness is still there but not as extreme. I definitely feel the benefits from hyperbaric treatments. The brain responds favorably to hyperbaric treatment. Benefits have been documented in patients with Parkinson’s, strokes, brain injuries, and other brain disorders. Recall hyperbaric oxygen therapy empowers mitochondria (power houses of our cells) to energize the brain. On to supplements… If you haven’t raised your eye brows yet on any of the treatments yet this may be the first. I have taken some biological (spagyric) preparations. Spagyric medicine is an advanced form of natural medication from Europe. Those that I have taken, Cerebretik (brain support), Hepatik (liver support), Lymphotik (lymphatic support) and Renalin (kidney support). Many medications act to relieve and manage symptoms. The “Soluna” medicines act in a deep systematic way, regulating proper functioning on a cellular level in restoring health by homeopathy, herbology and pharmacology. Each medicine targets a specific system or organ to assist in restoring proper function so that disease no longer persists, and symptoms naturally stop. Each of these medicines from Germany combines numerous high-quality plants, herbs, minerals, and metallic elements, and undergo a scientific process to produce a highly concentrated and bioavailable product. These liquid tinctures were taken twice a day for 30 days. Some taste OK, others downright nasty! Nevertheless, I haven’t progressed like typical ALS patients. Maybe there are some things that folks can do to help and support themselves when given such an extreme diagnosis? Encourage those you meet that are given the “I don’t know what to tell you” line from a physician… To find another opinion/ physician, try alternative care (check certification and backgrounds) there may be some answers for you after all… And a lot more questions! (Ha-ha) Good luck!
Extras above supplements
Journal entry by MaryFran Kolp — 7/21/2015
This past weekend we went to Indiana for an AAU basketball tournament with Danny! What a season these boys from the north have had! If you are a basketball fan in general, Fort Wayne, Indiana is a basketball mecca! In this national championship tournament Danny’s division 15U for the tournament had 44 teams! Basketball everywhere! At this tournament we had a few dreams come true for our son this weekend… Not that anything will come of it but it gives us and him hope for the future, as for what this was…Tom Izzo, the head coach from MSU came to watch Danny play. We were given the heads up he may do this…He couldn’t believe it, nor could we, looking up in the coaching and recruiting stands and there he was! Danny and the team played well too and won! Way to go boys from the north. That wasn’t all, in addition to that highlight, Bacari Alexander from U of M watched another game of Danny’s at the Spiece Center and stayed for the entire game. To top that off, Oakland University’s, recruiting coach Drew Valentine watched 3 of Danny’s games. Also, Northwestern, Central Michigan University and University of Detroit recruiters were in the stands! It’s nice to know Danny’s being recognized. Being “on the radar” at this point is a gift! A special thank you to Danny’s coach and Sports journalist, Steve Bell for getting him on the “who to watch for the future” list. As Danny grows and gets stronger…the sky’s the limit for him! Time will tell! Now switching gears here’s the final listing of my supplements: Brain sustain, ProDHA, DHEA and A-L complex immune support. First, Xymogen BrainSustain, developed by Dr. Perlmutter to support brain health. It’s a vanilla shake that provides support for the brain and spine. proDHA provides neurological support and brain support. DHEA in my case may help with my adrenal insufficiency, as my adrenal glands are exhausted! Can you blame them? I saw another very well-known physician in Ann Arbor, Dr. Neuenschwander utilizing holistic health practices. It will be nice to have someone that supports alternative therapies for neuromuscular disorders closer to home. I was put on a cancellation list and was blessed with a call and by divine intervention we met today! I will undergo further testing, but it appears there are many factors contributing to my ALS symptoms, such as, bacteria such as those associated with Lyme disease, heavy metals such as mercury and a compromised immune system. Further testing will offer next steps for my treatment. I am still down state and will be for the next week. In addition, I will be getting hyperbaric treatments and starting at home detox IV’s and Danny will be attending two invitational basketball camps! Lansing and Detroit here we come! Hugs to all of you reading!
Just a friendly update
Journal entry by MaryFran Kolp — 7/31/2015
While Danny is attending a day camp in Lansing, I took this perfect opportunity to visit Darby Walker, a young lady Danny’s age from Petoskey with cancer. She is presently at Sparrow Hospital undergoing chemotherapy. I was blessed to go to lunch with Shawn, her Mom. Darby had a spinal today and with prayers they were successful with one poke! Darby is a strong little lady, I get strength and hope from her and watching her journey, while living mine! Just thought I’d put it out there, if you have an extra prayer or two, we’ll take them! We are so blessed… And we’ve experienced firsthand prayers help!!! Remember everybody’s got something! Celebrate today! Have a Margarita for us (I can do organic tequila and limes… Ha-ha)! Or a lemonade if you prefer!!! Thank you for your kind comments on my CaringBridge site! They continue to inspire me!
Back home with family and friends
Journal entry by MaryFran Kolp — 8/2/2015
Today was a wonderful gift! After celebrating Mass at the parish I grew up in, I was able to see and receive many heartfelt hugs and blessings from neighbors and friends I grew up with! I kind of revert back to a kid seeing all of them and this group of neighbors or “adopted family members by my heart” felt a peacefulness being amongst these precious people that know my history, my strengths and weaknesses and still find it in their hearts to pray for me and my family! I can never thank them enough, except to offer up prayers for all of them and their loved ones. Which I will do! Danny and my parents and I went to breakfast with this group, once referred to as “The South Lyon Yacht Club Members” and had an enjoyable meal! It has been a long while since I’ve seen many of them! It was good to catch up if even for a brief time. The fun didn’t end there, I had a wonderful afternoon with childhood friends and their families! Danny and I went to the Burke’s home (Pam Heiler Burke) one of my ultimate best friends growing up and the Skene family came over too! (Tracy Meloche-Skene) my best granola friend, wise beyond her years and our kids have grown up during summers together! It was a great afternoon! And Doug, Danny has you by at least 2 inches! Lol. Alright…you have him by at least 149 lbs!!! Today was a blessing! I am grateful! What a special day! All Sunday afternoons should be spent similarly! I pray all of you reading had a great weekend!
Hyperbaric and treatment update
Journal entry by MaryFran Kolp — 8/5/2015
This week I have been doing double sessions in the hype
rbaric oxygen chambers in South Lyon, my home town. Living back home getting spoiled by Mom and Dad! While Danny lived at my sister’s! She has Wi-Fi and Uncle Josh too is there, along with the cousins! Honestly, this week started out rough, I didn’t feel really strong and I was very tired. Between Dr. appointments, hyperbaric, seeing friends and family along with getting Danny to basketball camp in Dearborn (thanks dad & mom and Carl for help driving him)!
I did have the honor of meeting with Dr. Neuenschwander “Dr. Neu” he’s a very kind physician that works with patients with neurological disorders and those with Lyme disease in Ann Arbor. He is located at the Bio Energy Medical Center. We are re-running my Igenx Western Blot Lyme’s panel. As last year there were some insignificant bands indicating its possible presence. But, nothing positive according to CDC guidelines. I’m curious of this result now as Lyme disease may be contributing to my disease symptoms. This does not mean if I have Lyme disease that my ALS diagnosis will go away, but some of my symptoms may be treatable. In addition, Dr. Neu ordered more blood work and a urine sample to assess some other things in my blood and potential heavy metals in my system. While doing this I also received double sessions of hyperbaric treatments as already mentioned. These treatments exhaust me, but also, they make me feel like my symptoms are more refined, specifically to my left arm and shoulder. My legs are weak but after a little rest, I feel so much better!
As for Danny’s camp…it was a great experience. He had drills in small groups and attended lectures regarding, character and integrity, setting a high standard for yourself, recruiting, sports nutrition, importance of academics in high school and college, offenses, choices in personal relationships, they covered the spectrum of topics! They also had a career day and went to the Lion’s training facility and met some players. In addition, they went to Quicken loans to get an education on financial information and how to be careful with finances. Danny also had great conversation with coaches and professional players, Tim McCormick (Randy, Eric and Dan…Danny told Tim hello for you, he sends his best to you guys) also, Lindsey Hunter! This camp was an honor and privilege for Danny! He made great contacts and played with some of the top 100 high school kids in the state! Danny even moved up and played with the Michigan elite 17 and 18 year-old’s! These boys sure were big! Danny looked average sized compared to them but played very well! Danny and I head home tomorrow!
Journal entry by MaryFran Kolp — 8/20/2015
Will Edison has an interesting piece on You Tube.
“Rise to Greatness: Fearless Faith.” Watch it. If you have something you’re working through or something troubling you, hopefully this will be a message to help you on your journey. It was good for me to watch today.
I don’t have any blood test or other test results back yet. I was told 4 to 6 weeks, so I will call next week and hopefully have some answers then. What I have been doing are continued supplements, detox IV’s at home (prescribed by my physicians in California), and acupuncture. Also visiting the eye doctor thanks Tess and Sarah from Infinity Eye Care, my prescription with hyperbaric treatment changes drastically for about 3 weeks and they have multiple lenses on site for me! Besides a few bumps in the road, honestly, it’s been a fantastically blessed summer, but a challenging few weeks. Andy had to assist me in pulling up some tight shorts, getting my sweatshirt on and shaving my arm pits this week! Ugh! My left arm is I could say “really weak” or “maximally being put on detox duty to try and keep me as well as God permits.” Included in this detox process I have cried A LOT. All kinds of tears, happy, sad, blessed, fearful and just feeling like PMS on steroids in the crying arena!
Every night I count my blessings and try to reflect on what gifts I was given that day! But, I am human and must admit “fear of what the future holds for me and my kids and my beloved husband of 19 years crept in the past few weeks.” We just celebrated our Anniversary! I’m so blessed Andy meant it when he said he’d love me in sickness and health. This anniversary was different, no golf or biking this year…we went to Mission Peninsula and Traverse City! We walked, wine tasted, had a great dinner at the Jolly Pumpkin and talked about our wedding and sharing that day with those we love! I do freak-out from time to time but not in front of my kids. What gets me through are YOUR prayers, YOUR gifts from God shared with my family and me. For example, I received a very thoughtful card and have received others from Norm and Emily Daniels. They pray for me and I guess God gets a pen in Emily’s hand and when I’m full of more fear than faith she writes, and I get a card in perfect timing for my need. They are St. Francis Parish family members that have adopted us in prayer and we have adopted them in family! I am so blessed to have them and all of you! We have had spectacular meals, Sue Blankenhagen my family loves your meatloaf and the mashed potatoes! Marie Law thanks for keeping me on track with appointments and starting to organize more of our stuff! Melody Collins and Terri Reynolds, Annette Pocica and team Maggie Kromm and Trudy Haussman Hogan, thanks for making our house look like a home! Melody you truly knocked it out of the ballpark. Your connections and shopping skills to decorate my house is amazing. I’ll post a few pictures here too. I’ve decided to go away more often! Ha! Every time I go away someone redecorates or does something spectacular with our house. I call our house the “pizza house”! All are welcome, and our home is a safe-haven for all teens living out of town and waiting for a practice or after school activity! We are in the perfect location across from the high school and many families and friends from this community helped us put together this house. The least we can do to give back in thanks and have an open door! We are so appreciative and grateful! Hugs to All of you! Remember the glass is always half full!
Danny’s playing Varsity Tennis
Journal entry by MaryFran Kolp — 8/22/2015
Great first tournament! Even a picture in the News Review! How blessed!
Megan’s Freshman volleyball team undefeated champions
Journal entry by MaryFran Kolp — 8/22/2015
Congratulations Northwomen!
Congratulations Megan!
Journal entry by MaryFran Kolp — 8/22/2015
The Petoskey tournament held this weekend was a great success! Undefeated Petoskey Freshman against Sault St. Marie, Elk Rapids, TC St. Francis, Boyne City! Way to go girls!
News a Mom has to share
Journal entry by MaryFran Kolp — 8/25/2015
This was a most memorable day! Andy, Danny, and I went to Central Michigan University on an unofficial recruiting visit for basketball today! After a tour of the facilities, meetings with Coach Smith and Coach Davis and Taylor the strength trainer, a tour of the sports complex, dorms, and the business school Danny was given an offer to play basketball there! Go Chips! It was an honor and privilege for Danny! We are so blessed! He has a lot to think about!
Kolp Open House after dropping kids to school!
Journal entry by MaryFran Kolp — 9/1/2015
Mark your calendars the first Friday of school, Sept. 11 join us 8:30-11am at the Kolp’s home for a back to school catch-up from the summer time! Quiche, pastries, salad, juice and tequila will be here for breakfast & see our home! Many of you have worked on this house and we thank you! Come see the hard work done by friends and family! We will do a tequila shot under the hallway chandelier promptly at 9am! Other shots and coffee will be available too! (The tequila shot has been a joke shared with all of the hard workers moving us and helping to set up our new home)! All are welcome! Bring your back to school friends too! Understand your children are welcome here after school… before practices, especially for those of you that live out of town! Your children always have a home in town if they need it! A community made this house a home, the least we can do, while I’m able, is offer our home and unlimited pizza and veggies for your kids! I hope to see many of you on Sept. 11th…we will offer a prayer for all involved in the twin tower incident 14 years ago too. Megan was 2 weeks old!
Stem cells a possibility on the horizon
J
ournal entry by MaryFran Kolp — 9/1/2015
More than 115 million dollars were brought in doing the ALS ice bucket challenge! Many of you contributed to this cause…and I thank you…especially to those challenges personally dedicated to me…nevertheless I think it’s CRAZY pouring ice over yourselves! Ha! But what an outcome to this crazy effort! There’s a lot of applicable research now out there and I like to think I’m just a small sample to the cutting edge holistic alternative solutions to this problem! Between numerous tests (FDA approved and others not), a ketogenic diet, supplements, acupuncture, cranial sacral therapy, walking daily, homeopathies, detox IV’s, dental cavitations addressed, hormone issues, metal detox, support from a physician team who believes the body has a great capacity to heal if given the tools! Now I am preparing to find out more about stem cell injections. I would not receive embryonic stem cells, I would receive an injection of my own stem cells into my spinal areas affected. To find out more on who I will be seeing and a brief description of what I have done to prepare for this I encourage you to Google…strokedoctor.com. Dr. David Steenblock, DO has a stem cell research lab and stem cell therapy protocol for ALS patients in southern California. As you will see in his ALS video, this is a multifaceted disease (kind of like unpeeling the onion as previously described by me). My physicians in California are supportive in finding out more and creating a plan. This will be as expected, expensive. We will keep you all informed on how you may be able to contribute or help down the line. Don’t think I’ve given up and am doing stem cell injections as a last resort. I’m not. This is just another chapter in the book I’m determined to write in hopes it can help others yet to be diagnosed!
The Highest Hurdle Page 8