The Highest Hurdle

by Kim Wroblewski

  I have been asked on numerous occasions after my last two blogs to share what supplements I’m on. I’ve shared this and deep detail in earlier blogs. Please note you should discuss with your health professional before taking supplements. I have had many tests…Lyme disease, muscle enzyme testing, heavy metal testing, gut health testing, hormones, bacterial, fungus, viruses all investigated. I have had bloodwork, urine and fecal testing and retesting to determine my regimen. But in summary I am newly on progesterone, testosterone, and an estrogen supplement (I am 48 at that age with a lot of changes going on) after my last round of blood work. The following supplements I’ve been on the following for quite some time: CoQ10, Inosine, neo40, magnesium citrate, magnesium taurate, iron, ferrion, nrf2 activator, DHA, DHEA, garlic, vitamin D drops. Specifically, for gut health, commensil probiotics, Restore and HPL probiotic are taken before meals. Additional support, A-akg powder, L-serine powder, and Trehalose. I also continue to get a B12 shot twice a week and take oral liposomal glutathione. In addition, once a week I get an IV which includes magnesium, vitamin C, vitamin B and some homeopathies. Lastly, I still do hyperbaric treatments when I’m downstate and ozone treatments too. Obviously, some care is rationed due to cost. These above-mentioned treatments and acupuncture are added when possible. In addition, I’ve been blessed with Orthosport, specifically Shelly Budnick for PT massages and H wave treatments. And, Rae, a dear friend, from Petoskey Hand Therapy for her personal help with stretching and exercises. Never underestimate prayer too! I’ve received the blessed sacrament Anointing of the Sick. Thank God for my Faith. Also, newly added, I’ve purchased an ozone machine. This has an immediate impact on me. It really makes me feel calm and relaxed, no muscle twitching! Lastly, consider a Paleo or ketogenic diet. Work with a licensed professional on diet…but thus far I believe diet has had a major impact on my neurological disorder and symptoms. For support start with any of Dr. David Perlmutter’s books…”Grain Brain” could be helpful. Sounds like a lot I know, and it is. It’s a full-time job! But, if we can get some answers who knows what we’ll discover. Hope this helps and answers general questions you may have on why after 2 years…I’m still walking.

  Michigan Mustang’s 16 AAU Basketball tournament Champions

  Journal entry by MaryFran Kolp — 4/4/2016

  This past weekend the boys from the Mustangs won their tournament at the Hype center in Dearborn! Great tournament! Nice win! Congratulations to Danny, Tray, Davion, Xavion, Gabe, Goliath, Luke, Tanner, Jacob and Taylor!

  In California at Dr. Steenblock’s office

  Journal entry by MaryFran Kolp — 4/7/2016

  It’s hard for me to believe California has drought problems! Our first two days in San Diego it was 60 degrees and rain! Ugh! Well I guess if I’m visiting doctors it’s good not to be too warm or sunny out. Just feel bad for the kids! Meg’s bummed to be tan less…but it may be a blessing no skin cancer!

  My visit with Dr Steenblock was beneficial. I have more testing that needs to be done. More blood, fecal and urine tests but looking first at virus, bacterial and fungal components. First, he feels I have gut issues associated with my ALS. So, we’ll get a further assessment on what’s going on there. Then entertain STEM cell interventions.

  Our spring break ended up being a great visit! We were able to spend quality time with the Collins family! Surfing, eating, drinking and college touring! We too were blessed to see the Hogen family, the Murphy family, the Danly family and some summer Lake Charlevoix friends! What a treat! Everyone is doing well, and the kids are all growing up! Also, we had a great visit with Sarah and Ken, dear friends that did a little shopping with our kids! Meg and Dan were so happy! It was so nice to catch up and see some loved ones on the west coast! It was a great trip in all. We even had sunshine the last few days!

  A great Mother’s Day wish to all!

  Journal entry by MaryFran Kolp — 5/8/2016

  I do hope the snow is behind us for a while! Happiest of Mother’s Day to you and your Moms! Our kids are well! Meg busy with AAU volleyball every weekend until early June, Danny busy with AAU basketball. Andy leaves his group, so he can help me more June 15th. He will then become an independent consultant and work as it works out for our family. He isn’t retiring, just getting a little more flexibility with his schedule. Andy’s partners and their families have been so supportive and gracious, we can’t thank them enough. A special thank you to all my caregivers. The needs for help are increasing and at every turn you are there with love, humor, respect and genuine care. Divine interventions keep me going.

  This past month a bitter sweet happening… I’m no longer driving, and we traded my Traverse for a Ford Flex…I call the Gangster car. Although not the most attractive in my opinion, it is very comfortable and spacious for travel, especially for tall families. Nevertheless, bittersweet… I’m now officially chauffeured… Kind of like the movie “Driving Miss Daisy”. Mom’s and Dad’s treasure carpooling and carting kids around, no matter how hectic, you never know when you may not have this gift any longer!

  Next steps for my treatment include more testing… I consider my body a test tube, (hopefully we can get more information to defeat this disease with my soul intact of course! A twist of Ultraviolet light therapy, Colposcopy upcoming… Then STEM cell prep (not embryonic)! I’ll keep you posted! Hugs to you and your families! I’m so blessed for your help, prayers and positivity! Blessings sent to all of you!

  Silver bracket champions in the premium division

  Journal entry by MaryFran Kolp — 5/9/2016

  Congratulations Michigan Elite Diamond 16u team! Champions again!

  Update from the Kolp family

  Journal entry by MaryFran Kolp — 5/21/2016

  I pray this greets all of you doing well this beautiful spring! The Kolps are hanging in there! We have had some great moments and we have had some challenging ones. Megan’s volleyball team continues to improve and do excellent in their tournament play winning a lot! We’re so proud of Megan’s team and Megan she has just excelled and grown so much as a young lady and in the sport! One week until the state competition in Grand Rapids! Wish us luck! As for Danny, we have had an unfortunate setback, Danny has torn his tendon affiliated with his knee cap again. He was scrimmaging when it happened. He was 6’4 at his last knee surgery he’s now 6’8 two years later, this may be part of it. His growth plates still aren’t closed but they’re close. So, his summer season is done. We’re gearing up for surgery and with a little luck he’ll be ready for his junior high school season! I have to believe God has our backs but Ugh!!! We’ve cried, been sad, even angry but now we’re moving on day by day. Reminding ourselves daily it’s a small piece of God’s plan a universal plan not just about the Kolps! As for Andy, he’s gearing up with starting his own business as he is leaving his existing ER group. He will begin locums mid-June while taking a big chunk of the summer off to be with our family. He’s fishing again and biking! I miss doing this with him, but I’m so glad he’s back to doing some things for him! As for me I need more help these days. God’s easing me into this change with friends and family support. Often both arms don’t work well, often friends and family assist me in eating these days. Slowly losing freedoms and counting my blessings along the way. I’m continuing with ozone treatment, acupuncture, physical therapy, supplements and just go day by day. I’m not going to die anytime soon, so don’t be alarmed. But, if I pass from ALS please don’t put in print anywhere I lost my battle with this disease. I hate how they do that with those that had cancer and die! This disease has shown me many fruits of my volunteering and interactions with people! I’ve even grown closer to my Frantabulous Friends having discussions I never would have had if I wasn’t sick! So, however gruesome this gets, as I’m sure it may. I have some great experiences and I’ve gotten to know many of my acquaintances as good friends. We spend quality time together often. The kind of friends that feed ya, bath you and laugh and cry with you …without judging me. I never would have
been blessed with these gifts! Also, crying I now view as cleansing the soul! After a good cry I feel better and lighter! Don’t you? How has crying been viewed as a weakness when it’s so powerful! Switching gears…

  Many of you know last evening was the 25th Anniversary of the St. Francis Gala Auction. Katie and Amy did a great job as chairpersons this year for this event. Last evening, as I sat at a table filled with friends and surrounding our table were more friends! One of my, thought to be, worse nightmares came true, I was fed my dinner at a formal event! I had Andy on one side and my friend Vanessa on the other, not missing a beat and scooping in bite after bite. But, I survived as did they. Clean plate and no food on my dress!!! As I looked around this table I was awestruck by the friendships that shared this table and those nearby. As the Lord knows we all have issues, I witnessed laughter, tears, concern and elated spirits as we had the $20,000 raffle ticket winner at our table! Congratulations Mike and Lanette Hoffman! What an evening with special men and women surrounding us! Our angels on earth! Enjoy this beautiful Michigan spring! I am!

  Summer vacation is here! What a crazy start!

  Journal entry by MaryFran Kolp — 6/17/2016

  Truth is Stranger Than Fiction! The Kolp family summer vacation is off with a Great bang, exams are done, snow is gone, summer activities have begun! The Kolp kids are rocking! Megan had a spectacular travel AAU volleyball season! Collegiate basketball recruiting has begun for Danny! This blog I’ll update you on the kids. Then next entry immediately following I’ll update you on my health stuff and treatment.

  This past June 15th the NCAA guidelines permit college coaches to contact perspective college basketball athletes from the class of 2018. All of which Danny is part of this class and is ranked in the top 100 for the class of 2018 for basketball recruits. Although we must be honest, since the knee cap ligament injury we weren’t sure with missing the summer AAU basketball season who or if anyone would call Danny as a prospective recruit. We were pleasantly surprised and so happy for Danny. On the 15th at midnight he received a tweet from coach Smith from Central Michigan University confirming their offer for a basketball scholarship. In addition, he received another offer from the University of Toledo. This was followed by numerous phone calls of interest from Iowa, Duquesne, University of Milwaukee, Oakland University, Air force, and DePaul! Calls are still coming in forgive me if I missed a few. Danny’s phone is “blowing up”! And, despite Danny’s injury, Coach Beilein from the University of Michigan called, and Coach Dan Fife from Michigan State came to visit Danny at MSU Team camp yesterday. We were so happy for Danny, as he was very concerned that he wouldn’t get any calls due to his injury and missing most of the summer basketball season. Please pray for him! Especially this Monday that God has his hand in Danny’s surgery scheduled at Beaumont Royal Oak, with Danny, his physician and nurses and techs. Andy and I could use a few too!

  Megan’s AAU volleyball season was a great success! Her coach is in the process of creating a recruiting video for her. It’s hard to believe but Megan may actually know where she’s going to college before Danny! Volleyball recruiting works this way, early verbal commitments are common. Although she’s only 14, she’s already being looked at 3.9 GPA, smart and 6’2 working on her vertical jump and foot speed she’s something to reckon with and willing to work very hard to maximize her potential. It’s not easy finding a 6’2 coordinated young lady and she’s all that!

  Our kids, as all of you know have had a few rough years with my health issues. Andy and I are so proud of them and thank all of you for nurturing their God given gifts. We tell the kids often to those that are given much will be asked for in return. They have been blessed by YOU and me! They’re fighters and despite obstacles they’re doing their thing, and well day by day!

  Happy 50th Anniversary Dan & Carole Peterlin

  Journal entry by MaryFran Kolp — 6/22/2016

  It’s hard to believe 50 years!!! Congratulations Mom and Dad! I pray you have many more fruitful years ahead of you! If all of you reading this could offer my folks a prayer and good wishes on their special day that would be great! Thursday, June 23rd! It seems like yesterday we had a 25th Anniversary party, and I thought that was a long time! Now Andy and I have been married 20 years and have two teenagers! Crazy how time flies! No party this time but we’ll do a small dinner at my sister Natalie’s cottage over the fourth! They are wonderful parents! Natalie and I have learned a lot from their love and example! Great human beings, parents and friends. We love you both so much! A priest once told my folks…a good marriage is not the wedding day but 50 years from that day and witnessing all your loved ones and blessings you’ve accrued over the years!!! You have a lot of blessings! God gave me the two of you! We are so grateful and blessed!!!

  Moving forward…one doctor at a time!

  Journal entry by MaryFran Kolp — 7/16/2016

  The past few weeks have been nonstop for the Kolps! My birthday was very special this year, we celebrated as a family my parent’s 50th anniversary, my birthday and that I’m still walking after being diagnosed with ALS 2 years ago. Danny’s still on the mend, a real trooper he hates not being active during this healing process. He has 2 more weeks in his brace but has been doing some upper body weights. Megan attended a team camp at Grand Valley State University for volleyball! They did well, 3rd overall! She then immediately went to elite volleyball camp at the University of Michigan. She loved camp and enjoyed her cousin Sydney as her roommate! Andy is on sabbatical while we figure out our family plan. However, it hasn’t been all rest, caring for Danny and me. In addition, Andy started his business during this time. He’s an independent contractor now and many calls are coming in for work. He’ll be back in ER’s in August while accommodating our family needs too. He has been amazing caring for us, never complaining with our requests. As for my health it’s getting more challenging, but God always puts an angel in my presence to get me through. Whether I receive a card a call or a friendly hug or prayers! While downstate I met with an eye doctor, Dr. Debby Feinberg that placed prisms in my eyeglass prescription, it appears I may have had an injury to my head or neck, or trauma sometime in my life probably through athletics. I can’t believe the clarity and steadiness a pair of glasses can give me. Through this appointment Dr. Debby recommended I consult with another neurologist that “thinks outside the box” I was impressed with Integrated Neurologist Dr. Giressh Velugubonti’s assessment process, evaluation and then his treatment which concluded I needed to be on some antiviral meds, antibiotics and detox following extensive bloodwork too. And pursuing stem cells were all once again put in play. It appears I will be getting Stem cell treatment Mid-August. We’re working through details. Lastly, I met with an integrative nutritionist while downstate. Aarti Batavia, her training was done with Dr. Perlmutter and his nutrition professionals. Healing with food can’t hurt in my desire to be more well! When given the cards I’ve been dealt, you choose sole “evidence based traditional medicine” and while “no cause and no cure for ALS” you simply report every 6 months as you progress or become part of a study where I would be taken off supplements and put on a placebo or drug…or you look at alternatives. Pulling from all areas of science to Methodically create a new path? I like Physicians that think “outside the box” and pray others with ALS seek other treatments. If it doesn’t cure them it can make one feel better! God willing if I get well or stable I’ll be pushing for research and treatment coverage of alternative means for people with ALS.

  July 19, 2016

  MaryFran had a Mediator Release Test. It basically showed which foods and additives she had reactions to and should probably avoid. She strongly reacted to green peppers, mint, kaput, pistachio, mango, and soybean. She moderately reacted to almond, American cheese, apple, baker’s yeast, broccoli, celery, cheddar, yellow 5, grape, honeydew, lettuce, mushroom, mustard, orange, oregano, papaya, quinoa, sole, string bean, and yellow squash. In the summary, it says that if you have previously regularly consumed be
fore testing and not had any allergic, autoimmune, or other inflammation-provoking or symptom-provoking reaction, they are probably okay to ingest.

  Stem cell treatment scheduled

  Journal entry by MaryFran Kolp — 8/6/2016

  As this spectacular summer comes to an end, fall sports begin and cutting-edge medical procedures attempted… Andy and I will be heading to California to begin a 2-week stem cell treatment for me. If you’re interested in learning more about stem cells check out http://dld-conference.com/events/stem cells -the- future -of-Medicine. It’s a 20-minute video that explains what stem cells are, how they may be key to the future of medicine and there’s an example of an ALS case showing improvement. This process slightly modified, as my stem cells will be extracted from my hip bones, as I do not have much body fat. I will begin at noon on August 22nd in San Clemente, CA luckily not too far from friends in Laguna Hills, where we will be staying. Another divine intervention, the Hogan and Danley families helping us when we’re out there. In this stretch before stem cells, I had some more blood work done. Another Lyme’s Western blot test that came back with a few positive bands but nothing conclusive to standards. In addition, I tested positive for relapsing fever, a spirochete-bacteria, a cousin to Lyme. Therefore, my supplement and prescription has changed in this stretch before stem cells. I am now on heavy antibiotics, antiviral medication and 2 antifungals. Reason for the antifungal’s research shows in autopsies 100% of ALS patients have Candida overgrowth in the brain. So, we’ll have done a lot of the ground work prior to stem cells based on the limited research available regarding this disease. This includes: dietary restrictions, supplements and prescriptions, detoxification for metals, amalgam filling removal, hyperbaric treatments, ozone treatments, acupuncture, cranial sacral therapy, multiple doctors’ visits and numerous prayers! Much not covered by insurance. All this in hopes STEM cell treatment may halt my disease or help and improve my symptoms. No guarantees. Lastly, I can’t thank enough Robin and Barry Bennett, the steel drum band and all of our friends making this ALS fund-raiser for us on Tuesday, at the Rose Garden, at the Perry Hotel possible. I don’t even know who to thank there are so many of you Angels! We are humbled and grateful.