The Highest Hurdle Page 6
Trip to Cali summary
Journal entry by MaryFran Kolp — 5/6/2015
I have been gone for 3 weeks, enjoying my time with the Collins family, especially my one-on-one time 24/7 with Melody! Andy had to return home to tend to our children and get back to work to pay for all of this. Therefore, Melody, with support from Jeff was with me. She was a great help and wore many hats during my journey…friend, counselor, nurse, secretary, chauffeur, advocate, financial provider, hair stylist, chef, shopping advisor, etc. and she’s still talking to me! I’m still not sure if we did more laughing or crying, but it was all good! Great in fact! Priceless memories! A lot has happened, between treatments, appointments, shots, manipulations, consults with doctors and dentists who think outside the box! As for asking the hard questions, Mel helped me with this too. Do I have ALS or something else? Recall, I received this diagnosis and confirmation last July from respectable and well-practiced neurologists at U of M and in Naples, Florida. Whatever I have can we fix it? Out of the 4 specialists I saw in California, 2 are not sold on the ALS diagnosis, or think we can tackle what I have based on their evaluation of me at this time. The other 2 are not sure. Time and further treatment will tell. Alternative practitioners do not like, nor do they use “labels” in their practice like ALS. They assess a person by lab tests, blood, urine, feces, saliva, energy, physical examination, discussion with the patient, then treat each symptom or imbalance one at a time or in small groupings, then they see the body’s response (mind, body, soul) and adjust protocol based on how the body responds. Nevertheless, it has been an expensive adventure. Much of what I’m doing is not covered by insurance! I don’t share this to solicit funds. Simply a stated fact, we blew through close to $15,000 in 3 weeks including flight, lodging when not at Collins, food, treatments, doctor and treatment fees and consults. This is not a poor woman’s disease. And the taxes and office rental fees these practitioners in California pay are crazy outrageous and obviously the tab is paid by the consumer like here! All just to get well! Thank God for the fund set aside for medical expenses. I have used it for treatments here and at home and I’m so grateful for it. I hope to use this fund for some help with medical expenses expected in June when I have to return for some follow up treatments. So, I want to thank once again those that contributed to that fund. Along with physician and specialist visits, Melody and I covered a lot of area exploring and having fun in Corte Madera, Mill Valley and my favorite Sausalito! All located in close proximity, tucked in the northern mountains of Cali! Corte Madera, cute town and two restaurants to mention that were our favorites, when not eating at whole foods, the Café Verde and the Blue Barn, great organic high quality and delicious food! Mill Valley had quaint shops and great atmosphere! They even had an organic fast food burger joint! Sausalito, love the hills and the bay and the view! We even had a few days, with light fog so we could see San Francisco across the bay. And, there is a great organic chocolate shop “Pick Me Up Chocolate” and a crystal shop with all kinds of interesting things! We even spent some time in old town Sacramento! Had great Mexican food on Cinco de Mayo! Weekends I was blessed to stay at the Collins Compound, in Truckee, CA. By Lake Tahoe! What a beautiful home! They too have some wonderful friends I met too! Jeff, Mel and Hunter and Kira are doing great! I’m so happy for them and grateful they shared their home and the surrounding area with me! It’s a spectacular part of our country! Now back home I so missed my Andy and Danny and Megan! It’s great to be back with them! Tomorrow we’re off to the Grand Rapids-Holland area for AAU basketball tournaments for both kids! I’m looking forward to watching! Then somehow, I hope to make my Godson Ethan Reed’s first communion! A busy weekend in store…One last note, and an important one I think. I have had a few people tell me with their gift of time, talent or treasure and from many of you all three T’s…that if the shoe was on the other foot or roles reversed, I would be one of the first in line to help. This is true. But, I have to let those of you helping know, your gifts, I believe given by God, no matter how much or little you feel you’ve helped me, and my family have not gone unnoticed. I have learned too with this neuromuscular disorder, I had to receive help, and it killed me not to send a thank you at every turn or buy gifts of thanks for you. I had to receive, accept and be grateful. I do not take one action for granted! Never will. I have offered my illness up for those that have helped me…that means YOU, my family, and those hurting, sick, and those that have lost hope. Don’t underestimate the gifts you’ve given us and others, trust me you’ll reap what you sow! Being an angel of God and doing work on his behalf here on earth isn’t always easy, but priceless in the eyes of Heaven! I don’t plan on giving up hope to be well, it may take a while and may get worse before it gets better! I hope to inspire others that feel hopeless in whatever their “poison” hope to fight! Nothing is beyond the reach of determination, if you just believe and trust! Love you all! Thanks for reading and sharing in my journey!
Thoughts after this weekend home after 3 weeks of treatment
Journal entry by MaryFran Kolp — 5/10/2015
I was able to reconnect with old Grand Valley friends during Danny and Megan’s AAU basketball tournaments this past weekend. What a treat connecting with other “old Laker athletes” and now all of us watching our children playing against each other in this tournament! Specifically, Tyler Davis (Mike Davis, Andy’s best buddy and roommate and team mate in college) Mike’s son and Danny played each other! What a rush watching the boys play! Congrats Tyler, their team won the tournament! It was a great organized chaotic weekend! Danny played an AAU tournament in Holland and Megan had a AAU tournament in Caledonia! Andy had to work so I drove back and forth watching the kid’s games. Both kids played well! Won some and lost some. After Danny’s team was done, he was asked to play in another tournament in Lansing on Sunday. Danny was able to catch a ride to Lansing as I needed to stay with Megan while she finished up in Caledonia. Then we drove to get Danny and drove home! So, for a Mom gone for 3 weeks this was the best Mother’s day gift! Watching both of my kids playing a game I love! How blessed I am!
Speaking of this, as I watch my children, now young adults, I’m inspired by them. I believe looking back, I will do the best I can in defeating what I have because of what I learned in athletics. Being competitive, wanting to win and doing whatever it took as a team and an individual to succeed! Up until Kindergarten or first grade, offering awards to all for participation may be a good thing. But life isn’t about everyone getting a gold star. Competition and giving credit where credit is due is a good thing it teaches us many things. How to win whatever the battle, how to lose and learn and competition helps you find and polish your gifts! For example, my kids, like Andy and I, were gifted with some skills for athletics. This is our vehicle for big life lessons, others it’s band, voice, robotics, debate, etc. We need to feed and fine tune those God given gifts! These competitive experiences prepare us for the challenges we encounter in life. As for my health status after being home, I have a new revised batch of supplements and homeopathies I’m taking. Also, I will continue some traction exercises I’ve been given to do. I will continue acupuncture and cranial sacral therapy too here at home. And, some IV home treatments as well. Then I will prepare to return to California for another round of treatments, hopefully having my kids go with me once they are out of school in June!
Tyler Davis and Danny Kolp
Journal entry by MaryFran Kolp — 5/12/2015
Danny shooting 2 over Tyler Davis!
Megan and Mike Davis
Journal entry by MaryFran Kolp — 5/12/2015
Andy’s best friend in college
Grand Valley Laker Alumni
Journal entry by MaryFran Kolp — 5/12/2015
Great connecting with old friends again!
Just some thoughts
Journal entry by MaryFran Kolp — 5/16/2015
By MaryFran Kolp - 2 years ago
It’s been a crazy few weeks since I’ve returned hom
e from California! This past weekend alone, I traveled with Danny to Kalamazoo for an AAU basketball tournament! Because I wanted to attend our school auction, my Dad came to Kalamazoo the second day of the tournament, along with Grandpa Carl to hang with Danny. Danny and his teammates won the tournament undefeated this weekend! Danny also won an outstanding player award for the tournament. As I drove home from Kalamazoo after leaving Danny to his Granddad’s house, I thought a lot about those on my prayer list: Lisa Terry, Darby Walker, Carl Vanderwall, Tim Kulman, Olivia Carlson, my children, husband and all our family members and friends! Again, I had 4 hours in the car to pray and listen to Christian Radio! Here’s a challenge for you…if you haven’t listened to a Christian radio station in a while, I encourage you when you’re feeling a little down, put it on and listen to the words of the songs played! Inspiration and hope are loaded in the lyrics! No sexual lyrics about bumping and grinding! I’m also reminded there’s something bigger than us listening to Christian radio! Try it! Trust me! You won’t be sorry!
Our school auction was a great success! Dan Cleary and Katie Tarachas and their team did a great job! I too was honored along with Liz Molosky with the Crusader Award! A complete surprise and honor! Also, It was great to see friends and parishioners all dressed up and catching up on the latest at this wonderful event! A great weekend and beautiful weather too! How blessed we are!
Great gift upon my return from California appointments
Journal entry by MaryFran Kolp — 5/17/2015
Upon my return from California I was greeted by great friends, Lynn Rawson, Julie Izzard and Deanna Beaudoin! How nice to see my friends I missed so much! But that was only the beginning…Julie Izzard, Terri Reynolds, Kim Scholl and Dave Skop did an HGTV job on my laundry room! My “Tiffany” inspired laundry room is amazing! It’s clean, painted, organized with bins and shelves and decked out with Florida pictures of our kids! I couldn’t believe it. I’ll post pictures! What a priceless gift! The laundry room was so skanky before, now one of my favorite rooms! I don’t even mind doing laundry! That wasn’t the only surprise, Lynn Rawson, Jennifer Buck, Julie Izzard cleaned my windows and blinds and planted flowers in my front pots to greet me!!! And, a special thanks to my Dad for bringing up my living room couch and thanks Ralph Guthrie for transporting and hanging my mirror! I’m so crazy grateful, I don’t even know how to thank these ladies and gentlemen for all of their help and hard work! Special blessings being sent your way! I do hope you had some FUN!!!
Frannie update and family happenings
Journal entry by MaryFran Kolp — 5/30/2015
A lot has happened for the Kolps these last few weeks! Danny has been blessed with being asked to play with the parallel 45 south team after his parallel 45 north season completed. The past two weekends we’ve been in Kalamazoo and Mt. Pleasant, undefeated and champions both weekends! So proud of this group of talented boys! Wish them luck in Lansing this weekend! We also had an 8th grade graduation! Megan is officially a high schooler! She’s so ready! I’m not sure Andy and I are! Meg is still enjoying her AAU basketball season and simultaneously has started volleyball training as well. This summer looks to be packed with activity! We wouldn’t want it any other way! We are aware these high school years are short and go by very fast so we’re maximizing every minute of this time!
Regarding my health, I’m stable. Not better but not worse. This I like to think is a good thing! We have begun my help from my Frantabulous Friends (who thought up that name anyway?) where a leadership team will help me and my family where we may need help or assistance. I’m so very grateful to all these helpers. Especially, Kim Wroblewski and Maggie Kromm for leading this endeavor! I hope to not require too much time at this point! Pray never!!! Nevertheless, thank you for all you’ve done and are willing to do to help me and my family.
As some of you know I had a very positive experience in California with my medical treatment received there. Therefore, I am planning on returning for round 2 beginning June 11th. I will be out there for about a week. I am grateful and thankful for Maggie Kromm and her kids who will be flying out there with me, and Robin Corrington who will be assisting me and will help get me back. Some of the treatments I will be receiving will be a little more intense than last time. Because of my success and stability, we’re kicking it up a notch! I will be undergoing some additional IV treatments some of them similar to what Lance Armstrong had done during his training. These include an extraction of some of my blood then infusing ozone, nutrients and homeopathies! In addition, I will be getting fitted for structural mouth piece that will assist with appropriately lining up my head, jaw and spinal column. It appears I have some structural issues that may be contributing to my symptoms. And lastly, I will be receiving some structural and visceral manipulation. I’ll keep you all posted with more details when I get there.
In the meantime, we are plugging away at getting things done at the house inside and outside. Thanks Dad for hanging pictures and shelves, thanks Julie Izzard for cleaning, Cheryl Hooley for cooking and chopping and dicing foods for my special diet! Thank you, Sue Blankenhagen and Kathy Coveyou for dinners…and Kathy I treasure the therapy pillow covers you and Lillian made me! Hugs to you all. Have a peaceful spring!!! I’m so glad to have a break from that cold white stuff!!!
Living Life to the Fullest
Journal entry by MaryFran Kolp — 6/7/2015
I’m not sure what to write? This has been a full week for certain. Danny finished his last full week of school. He’ll be done with his freshman year after finals this week! This weekend he participated in a basketball camp that was held in Kalamazoo and was invitational only, therefore, 80 of the top players in the Midwest were brought together to drill and play hoops. What an experience and honor! If we can keep Danny healthy I see a potential Division one player in our future! Simultaneously, Megan and her AAU basketball team had a tournament in Mt. Pleasant! We have been racking up the miles getting our teens where they need to be!
Through all this Andy’s been working and fishing! We had a great walleye dinner last week with family! What a treat!
As for me, I’m preparing to jet set out to California for round two of treatments on Thursday! Prior to my trip, I have appointments, including another MRI scheduled here! I’m trying to stay pumped up, but my left arm weakness has progressed. Again, one day at a time and accept help is all I can do! Here’s a funny, my poor husband for the first time ever had to assist me in getting my bra ON when getting dressed! Ha-ha! I needed assistance getting untwisted! We laughed, well kinda. Nevertheless, life goes on! Prayers still forwarded to Darby Walker, Carl Vanderwall, Lisa Terry, Fred Heiler and their families and all my ALS friends! Love you all!
Back again in Mill Valley, California
Journal entry by MaryFran Kolp — 6/12/2015
We arrived yesterday in San Francisco! Thank you to my escorts Margaret, Jacob and Genevieve Kromm! They have spoiled me! Along with Margaret’s brother Andy and his wife Amy Kronk! What a great family! This morning Margaret went to my first doctor appointment with me! I had structural manipulation and visceral adjustments. Dr. Linn utilized visceral, skeletal, and muscular manipulation. Before my appointment I could not raise my left arm up to shoulder level, my neck particularly cervical vertebrae 1,2 and C5 and 6 were all torqued and twisted. Also, I had left ear echoing and left shoulder pain due to atrophy and pinched nerves. After my session with Dr. Linn all of these issues have disappeared or decreased. For the most part just the left arm weakness remains, otherwise all is good! I’m expecting a lot out of this trip, but I too know patience is a virtue! After my appointment, we made a quick stop to Sausalito, had lunch by the water and a cappuccino and organic chocolate! Now I’m back at the hotel resting up! Have a great weekend y’all! Remember “Everybody’s got something” so be nice to all you encounter! You are loved unconditionally! How blessed we all are!
Round 2 journey begins
Journal entry by MaryFran Kolp — 6/15/2015
&
nbsp; This past weekend I wrote a big part of the last chapter of the book on my divine journey with ALS…I was in the Mill Valley area alone to rest and reflect before treatments began this upcoming week. I look forward to sharing my story and hope that if it provides but even “one positive thing” to future recipients and their caregivers given this diagnosis …I pray it helps. I thoroughly enjoy and trust my physician team and their staff while on this journey. They not for a moment thought I couldn’t beat this or at least feel better and offered support in doing so. Although, like many of you have questioned “Can’t you get the same treatments closer to home?” My answer, not before, but maybe now, although it won’t be the same. The network of physicians in holistic health and dentistry is really good and the number of patients they treat…amazing! As previously mentioned I have ALS an acronym for many things… A lot of shit, a lot of symptoms, a lot of sickness, amyotrophic lateral sclerosis and the list could go on. Through this process of “unpeeling the onion” removing or correcting symptom by symptom, it appears after 11 months I have not progressed as typical people with ALS progress. Maybe these physicians are on to something in my case. I can’t speak for all ALS cases, but mine I can. Why does it appear I’m having success and halt progression? Is it my will to do what God sets in front of me? Is it my ketogenic diet (no grains in 11 months, none) Is it my physician support (thank you for your continued prayers to guide them)? Is it my family and my Frantabulous Friends? Is it the supplements and tinctures and nutritional IV’s I’m taking? Is it simply the prayers of those near and far being answered? It could be a combination of the above list. I attribute it to that and that I adopted alternative means of medical treatment. See…when I was first diagnosed in the traditional medical arena, I was told I have ALS. I went for a second opinion, my second opinion agreed with the first and confirmed I had ALS. Then it was recommended I be put on a medication that may possibly extend my life by 2 to 3 months while simultaneously destroying my liver. In addition, I was nicely referred to a support group for my disease. It appeared I was not severe enough to be part of any study at this institution. That was it. Really, no cause, no cure, good luck? This is how I felt with our traditional medical system. I pray this isn’t the case with all diagnosed with ALS, but my two friends, I met after my diagnosis: Tammy and Amy with ALS had similar feelings! I would not, nor could I, settle for this outcome. Therefore, I went for a 3rd opinion. I went out of state to a very well-known neurologist who was willing to take a chance and step outside of the box and look at small studies with other patients that had ALS and we created our own protocol. I followed the Deanna protocol with a few extra twists. There it was I was in a study, 1 subject and time would tell! Well, I’m still walking, haven’t missed a beat with my kids and their athletic events and traveling, gained 4 lbs, (not characteristic of typical ALS patients), follow my gut with treatments with common sense and try not to dwell on the weakness of my left arm! Focus on the glass half full, not half empty. As for next steps in my treatment plan…this morning I once again had a Bio resonance Analysis of Health assessment. This test by using a blood sample can provide direction for treatment based on the findings. This BAH assessment assists the practitioner in establishing a treatment plan specifically for each patient. In my case, we found I am ready to tolerate more aggressive treatments, IV fusion with ozone. I will receive 2 treatments this week. In addition, I will receive detox IV’s on alternate days. I will continue structural treatments and adjustments along with visceral manipulation, lastly, I also received ozone shots and homeopathies in my left jaw today located where my wisdom teeth used to be. A busy week ahead to say the least. It’s been great seeing everyone. I’ve once again been given hope but am ready for a long journey! I’m so grateful for my dear friend and assistant on the remainder of this trip Robin Corrington! Thanks for coming out to be with me! I’ll keep you all posted! Thanks for reading! Sorry this was a long one!