The Highest Hurdle

  Fund-raiser with John Hefferon

  Journal entry by MaryFran Kolp — 12/19/2015

  Natalie Reed my sister and friends Michele Bird and Julie Nadeau!

  Happy 2016

  Journal entry by MaryFran Kolp — 1/4/2016

  I hope all of you had a very blessed holiday season! Great Thanksgiving, Christmas, Hanukkah, Kwanzaa and a Happy New Year! Remember to graciously put away all the holiday garb! You’re blessed to have it! I was blessed with my Christmas elves coming over yesterday to tear down our Christmas house. It was so beautiful! Andy and I were so grateful for the help! Switching gears… I have cavitation surgery scheduled January 26th. Not looking forward to that but it needs to be done. I’m hanging in there! I’m still walking but upper weakness continues to increase. Andy and friends do much for me these days. Good News! I have discovered there are now some STEM cell studies being conducted in the states, Mayo and Massachusetts for starters. I will be investigating more this week. These STEM studies are again using one’s own STEM cells, not embryonic, there have been very few if any success stories with embryonic studies, not to mention the controversy! Then providing nutrition to one’s own stem cells and resubmitting into one’s spine. Noticeable improved functional changes have been noted in a month’s time in some subjects in European studies. Let’s hope this is a breakthrough!!! I’ll keep you posted! Hugs and blessings to all of you!

  Journal entry by MaryFran Kolp — 1/21/2016

  Anyone wondering if we have snow up north? Absolutely!!! Great skiing for Northern Michigan! Many are enjoying the “powder” we’ve been blessed with! Nevertheless, I’ve put my order in for a little more sunshine! At least days of daylight are getting longer! As for updates…I once again thank all of you for your prayers, donations and support! I am so far behind on thank-you notes, forgive me! With the help of friends Deanna, Kim and Janet, I have forwarded to those that wrote checks for me a brief thank-you for the comedy fund-raiser. We were so touched and grateful. What an awesome event it was! We too are hoping for a “Hail Mary” when it comes to this ALS stuff! Your contribution is helping in this goal! Mrs. Elliot and the prayer group at the Methodist Church, I thank you and treasure the prayer blanket given to me. It is beautiful, and you were very kind to pray for me. As for medical updates, I had my blood work drawn for preliminary evaluation at the request of the STEM cell treatment center in California. They extracted 11 vials of blood! Results are now in and forwarded to my respective physicians. I’ll find out more next week. I still have a few other tests to do but with all of the other treatments involving my dental cavitations, I’m not ready to go off supplements for 3 days at this point. Which is what I need to do prior to any additional testing asked of me. In the meantime, I had intense ozone treatments in preparation for my cavitation surgery next week. The biological dentist I’ve been working with is excellent and I have a great respect for him. My treatment this time included shots in my mouth 2-3 on the left and right where my wisdom teeth used to be. Then 4 shots on the left and right exteriorly where my lymph nodes are located. By and behind my left ear where all my symptoms started. Then lastly my left shoulder and scapular area where atrophy has really set in. This all was then followed by a nasal/auricle treatment of ozone as well. Ozone has a distinct scent and flavor. Not good nor bad, but I’ve had enough to recognize it. This cleansing and detoxifying agent I respond well to. My ear crackling or echoing stops right away and although still weak my disease feels more refined in my arms and shoulders. Time will tell with these treatments and detoxification homeopathies I’ve been put on. Next week I will have cavitation surgery and more ozone treatments along with hyperbaric oxygen treatments as well.

  Our kids are doing well! Megan had a team building sleepover in Saginaw this weekend and a defense volleyball clinic and a hitting specialty clinic in Midland with her team. Danny will be back on the court this week after struggling with a pinched nerve in his back. Thanks Rob, Shelly, Christy and Grant of Orthosport for assisting Danny in the healing process! I want to thank all my Frantabulous Friends and angels here for me and my family. The meals, support, prayers, communion, rides, driving, cleaning, folding, hair help, dressing me, preparing my food, shopping and laughing with me and crying with me…thank you! P.S. my tears are in part for what I’m losing and what’s slipping away, but most of my tears are just in complete thanks and awe that I’m so blessed to have all the help and support I do! You each are a divine intervention for me!

  Cavitation surgery is over!

  Journal entry by MaryFran Kolp — 1/28/2016

  I want to first thank all of you that have posted comments on this blog and in emails. I read all of them and they inspire me to keep going. I received my blood work back. Nothing major found, low iron, low hemoglobin, low hematocrit, low MCH, and MCHC and high RDW and MPV levels. Also, high D-Dimer level a coagulation blood marker. My sed rate too was high. This information was for my nurse readers! May sound like a lot…but all should be fixable with supplements for the most part. The question remains…why? Why are these markers out of range? Is it a leaky gut or an absorption issue? Other? Interesting questions to ponder and more testing needs to be done. I would explain each term but don’t want to bore the rest of you! Check out terms online for more details if interested. All this testing and poking, prodding and sample collection Ugh! This reminds me with each test, I am an instrument of God’s peace. I will do whatever I can to help those that come after me with this disease. I will do whatever it takes to assist in finding contributing factors and solutions for those with ALS.

  Thank goodness my cavitation surgery is over! I had cavitation surgery on my lower left jaw, cleaned and scraped the area where my wisdom teeth once were. My left ear and speech changes were my first noticeable symptoms something was going on. I must say I felt instant relief of pressure and didn’t have the need to clench my teeth after the surgery. Prior to the surgery I had ozone shots and an ozone wash where the surgical area was. In addition, I also had ozone shots externally along my neck for lymph node drainage and shots along my scapular area which has really atrophied. Post-surgery for 4 weeks I will continue the ozone shots, continue detoxification homeopathies, take garlic tabs and now an iron supplement and folate due to my blood results. In addition, I have an oral rise containing: calendula and arnica and plantago. In the meantime, I had a follow up visit with Dr. Neuenschwander. He is part of the bioenergy center in Ann Arbor. He utilizes alternative treatments where applicable. He has homeopathic medicine specialists, energy medicine, acupuncture, IV and ozone therapies, etc. He’s also started treating viruses with UVLrx ultraviolet light intravenous therapy…I may be up for this next. You can check it out online. It’s presently under first step approval from our FDA. Then STEM cell adventures to follow. Now that we have taken care of gut health (ketogenic diet, probiotics and supplements), oral health (amalgam filling removal, cavitation surgery) and metal toxicity… onto other stuff to investigate…possibly a “stealth” pathogen, as derived from some of my blood work. We may entertain the UVLrx therapy for this along with continued hyperbaric oxygen therapy. (I love hyperbaric treatments. This infusion of oxygen in every cell of mine makes me feel in a good way that I ran a marathon but didn’t have to sweat! Although exhausting Hyperbaric treatments also make my skin look amazing! No wrinkles…

  I have friends contemplating Hyperbaric treatments for anti-aging purposes!) Lol. I’m still walking but getting much more help with showers, dressing, food prep…due to the atrophy in my neck and scapular area both arms are weak and affected. I continue to be surrounded by help and blessed with support. Well thanks for listening and praying. I’ll keep you posted. Here’s to hoping for a snow day for the kids of Petoskey tomorrow!

  Funny stuff to share and a twist of reality.

  Journal entry by MaryFran Kolp — 2/6/2016

  I often tell my girlfriends…seriously…If I look like I have bed head, or something in my teeth or spots on my shirt please fix it!!! My uppe
r body is now so weak help is not only appreciated but necessary! As many of you can imagine, it’s been difficult accepting help. Andy and my Frantabulous Friends are all angels. I am so grateful. Words are simply not enough. I now have Andy bath me, my Frantabulous Friends dress and pull up my drawers also a special thanks to Chanin Spadafore and her staff at La Dolce Vita Salon in Petoskey. They donate their time and service to me weekly and my family. Please consider them in Petoskey for your families’ hair care and nail and skin care needs. They are very gracious and professional! I again have difficulties with help and service, but I’ve learned to look at this a special way. Those of you that have followed the “Downtown Abby” series, I’ve quit the self-pity of needing help and simply pretend I’m like a queen or like “Mary” from the series, waited on, dressed, made meals, driven everywhere… I bet Mary even had Anna pluck the unwanted hairs on her chin! The other day I asked a friend to help me rid the few coarse hairs that show up monthly on me! We laughed she couldn’t see them! Ha-ha! All my friends are at the beginning of bifocal stage or in the middle of it and they can’t see them either! Ha-ha! As for health updates, I actually look good…with my slim frame I either look like Twiggy (a model from the 60’s) or an Ethiopian! Nevertheless, I don’t need to drop weight for spring break this year! Also, I’m continuing ozone treatments, hyperbaric and acupuncture! I still do some physical therapy and walk daily. I’m undergoing more testing…blood work and other excreted body waste. Next steps include possible Ultraviolet light therapy and then more testing and revisiting STEM cell stuff. Day by day is how we’re doing it!

  Danny and Megan are doing great in school and athletics! Meg’s basketball season is done. The girls did well 11-9, not bad for a rebuilding year. Meg is now fully engrossed with travel AAU volleyball out of Midland! They are climbing up and ranked 12th out of 50 in their division! We travel every other weekend for tournaments until mid-June! The Petoskey Northman Varsity went undefeated in their BNC conference this year. Districts start in a week! Good luck Northmen! Danny had a great season with this special group of 11 seniors! As for Andy he’s cutting back on work to help more at home. All is good! Keep the prayers coming! Hugs and blessings to all of you!

  Petoskey Northmen had a great season!

  Journal entry by MaryFran Kolp — 3/11/2016

  A 20-2 season and a conference championship are nothing to be bummed about! Unfortunately, the streak came to an end at Traverse City West High school against TC West. We lost 68-60. We were down by 15 at halftime, honestly TC West played real well. We came within 4 but didn’t break away. The 11 seniors were amazing and great leaders. Danny learned a lot. Danny played well and a lot tonight. He had a great learning season. Now we’re off to Waterford, MI for Megan’s travel volleyball with the Midland team this weekend. Then Danny starts travel AAU basketball. Keep moving forward, learn from life lessons and always be grateful. Have a great weekend! Remember God’s always got your back!

  Megan’s 16U Midland AAU team Champions!

  Journal entry by MaryFran Kolp — 3/13/2016

  Success this weekend! The 16U Midland team, of which Meg is a part, won in the 18U open Gold bracket! We are so proud of the girls they played way over-the-top!!! Thank you, Mike & Shelly Davis, Carl & Carol Kolp, Doug, Tracy, Nathan, Madeline and Nora Skene, Uncle Bob Gurzick and Josh & Natalie, Sydney and Ethan Reed!!! I’m sure our cheering session helped with win!

  Happy Easter to all!!!

  Journal entry by MaryFran Kolp — 3/23/2016

  Warning this is the longest entry yet! Forgive me but lots to share! This Lenten and Easter season has been most interesting for me this year. This season has been about sacrifice, offering, service, hope and renewal. Previous years I have offered help, service and encouraged and practiced sacrifice. It’s been almost 2 years since my diagnosis, since then I’ve grown in my Faith and I’ve been the recipient of divine interventions. It’s an odd feeling being the one in need of help. Family, friends, church members, community members and strangers have all stepped up to help my family and me. Friends and family have driven our kids to their AAU basketball and volleyball events. I’ve tried to express my heartfelt gratitude and appreciation, but my word choices don’t do justice to my true feelings. This journey has been terrible at moments mostly because of the fear of the unknown. Daily slowly slipping away, my freedoms to drive, self-dress, coming and going as I please and drinking a cappuccino with one hand…all ending. BUT God has surrounded me with warriors! Those that drive me, accompany me, dress me and assist with cappuccino consumption!!! There you have it…like all situations is your cup half full or half empty? God gives us that choice and we get to pick!

  We’re looking forward to spring break as a family. Heading to San Diego, hanging at the beach with the Collins family very dear friends. I’m looking forward to quality time with Jeff, Mel, and my “other son and daughter” Hunter and Kira! In addition, I’ll be having my first consultant with doctors in California regarding STEM cell treatment and what’s entailed. Thanks to many of you for the possibility to start this process through gifts and fundraising done so far. As many of you know many treatments, including this experimental procedure, are costly and not covered by insurance. But, crossing off the list, things that are not systematically balanced in me is a process. If we can gain any answers from my case for future recipients of this ALS beast…we should do it!

  Recently I had more blood work and other testing done. My blood work indicated I’m hormonally deficient therefore I’m now on natural compounded thyroid, progesterone, testosterone and DHEA supplements. Iron infusion is being investigated too, as these levels are deficient. As for my lung capacity this is surprisingly pretty good and efficient! Often with ALS patients breathing and swallowing become issues. I apparently am not there yet! Another interesting to note, it’s been over a month since my amalgam fillings extractions and my urine assessment indicates my metal toxins are down. We’re now on to treat something else. I am still continuing hyperbaric oxygen treatments whenever I go downstate for the kids AAU events. My body responds great to this treatment. I love oxygen! In addition, following my last treatment, I will share I also did an “anal ozone” treatment. The patient, me, simply places a small tube with a hole in it in the rectum and ozone is then slowly and a small amount infused. I only mention this because after this treatment I had an immediate positive response. I had no fasciculations and no twitching for about 8 hours after the treatment. It has been a long time since I felt this way. Normal…no twitching. I even was able to drive half way home from downstate after this treatment. Therefore, I felt it was worth noting. Since this response, being the researcher, I am…I did it again and had again a similar response. Now I’m looking to purchase this unit for home use. Small expense for the benefit. There have been suggestions that a virus may contribute to ALS, at least in part. Therefore, I will be starting IVLrx…IV light therapy, there has been some research in other countries utilizing this therapy. Many pathogens and viruses are so difficult to get rid of. The thought is if you don’t rid or dismantle the pathogen… What good can STEM cell treatment do if the element still causing the body distress is present? This is why this is such a tricky process. It would be great if it was so easy as taking a pill to fix this, or simply have STEM cells infused in my spine to be fixed. But we all know it’s not that simple! Again, there are no guarantees! What do I have to lose?

  You see my ALS symptoms may be associated with my gut health. To find out more about how many diseases, especially neurological problems may have a direct correlation with gut health consider a couple of reads. “Brain Maker” by Dr. David Perlmutter, “Medical Medium” by Anthony Williams. Focusing more intensely on gut health is my medical team’s plan.

  I may have shared more then you ever cared to know but others with ALS have been reading and following this blog. In traditional medicine many with ALS are not given hope. There is still so much to do and explore. One day at a time. Don’t leave any stone unturned!
Happy Easter! Don’t lose the magic of this Holy season! Keep on going! Spring is here! God bless each and every one of you!

  ALS friends and those with neurological disorders

  Journal entry by MaryFran Kolp — 4/2/2016