The Highest Hurdle

  Completing my week of treatments in Mill Valley

  Journal entry by MaryFran Kolp — 6/17/2015

  I want to thank all of you for your positive comments and inspirational thoughts I’ve received on my CaringBridge site, and text messages and emails. Don’t ever under estimate the power of prayer and good intentions! They have carried me and my family. I do apologize for some of my posts being so long winded! I just have so much to share! I concluded my second visit to Mill Valley and have completed my physician’s recommended treatments and dental treatments. It has been a long but productive week! I’m looking forward to starting back home with updated supplements, IVs and most importantly being with my family! This experience was very interesting, because all of my symptoms have shown some improvement. I do still have some symptoms that exist and hope to continue to work on them. This visit I was stronger, so we took a slightly more aggressive approach in treatments. As for symptoms that improved or stabilized…feeling returned to my tongue, improved articulate speech, more energy, no neck pain, minimized shoulder pain, walking gait more solid, left arm weakness better but not gone, muscle fasciculations are predominately in my left side not throughout my body as before. During this visit I had some unique treatments. I have posted a few photos in this CaringBridge photo section if you are interested! I too will share the names of these treatments if you are interested in learning more you can go online to do so. I also have to share three quick things before considering any judgement on these treatments. 1.) My disease has no cause and no cure in traditional medicine. 2.) I believe our bodies have limitless potential if given the right support, to cure, heal, or support itself within reason…but nothing is impossible. 3.) Consider my results thus far…I’m not getting worse, possibly better…my treatment may have implications for those in the future diagnosed with the symptoms ALS patients typically have, especially in the early stages. The treatments and testing this visit included: ozone injections, autohemotherapy, detoxification IV’s, Heavy metals assessment (New finding with testing…some toxic levels of heavy metals and environmental toxins were discovered) structural adjustments, a Bioenergy and resonance assessment to assist in determining my supplemental needs and support specifically. The treatments I feel have had the greatest impact for me were instant relief from ozone injections in the cavitations in my teeth. Within 30 seconds, my ear would crackle and clear after receiving the injection. No doubt one of my many symptoms has a bacterial component and the bacteria is not a good thing for my system in my present state. Another big part of my treatment plan included detoxification IV’s and ozone therapies as well. These “cocktails” provided grounding, I didn’t feel as uneasy or jittery in my muscular and nervous systems. An interesting result of autohemotherapy or oxygen-ozone therapy (OOT) is when bacteria and viruses die off and toxins released. Typically, minor symptoms similar to the flu, without the fever, can result. So, I did feel a little ill after this treatment. However, in the morning I felt much better. Lance Armstrong must have too after riding the way he did in the tours! The IV ozone infusion I received was similar to Lance’s cocktail he was busted for! This journey I was blessed with Margaret Kromm, Jacob and Genevieve escorting me to California and then Robin Corrington flew out to be with me and assist me home! I am so grateful! What blessings you are to me! Back home hugs to my kids and Andy! Special thanks to my in-laws for their help and Sue Blankenhagan for dinner for my family, and Cheryl Hooley for having ketogenic treats ready for me at home upon my return!

  Lance Armstrong cocktail

  Journal entry by MaryFran Kolp — 6/20/2015

  Ozone infusion into my blood with a little saline solution and heparin to prevent blood clotting!

  God’s promise

  Journal entry by MaryFran Kolp — 6/20/2015

  “God didn’t promise a life without pain, struggles, and hardships. He promises to give you the strength to get through them! “(Faith Reel, twitter) Andy shared this with me tonight! Some of you may need this reflection too! Enjoy!

  Happy 4th of July

  Journal entry by MaryFran Kolp — 7/3/2015

  This week brings back many memories of the past year! First and foremost, I was diagnosed a year ago on my birthday with ALS. What a gift. Ugh, but if I was to receive such terrible information there wasn’t a better day to get it as I was surrounded by my family and friends and I only had to share the news once and I didn’t have to make numerous calls to those that did not yet know. So, you see it was a blessing. I asked my family and friends to please keep things low key this year for my birthday. Thank you for respecting my wishes. This year has been a lot to process, I can’t deny. My birthday has always been a great time my entire life, parties, picnics, presents, fireworks and of course pies and cake! Not to mention family and friends were always around! I love birthdays! This year it was nice to keep things small and intimate, as this year was loaded to say the least! After a year I’m proud to report, since I’ve been supported more than I deserve by family and friends…through prayer, positive thoughts, financial support for alternative therapies, supplements, hands on support and assistance with our new house and our teens…I have not progressed like many ALS patients. This is a gift. As I’ve shared with many of you…I will never be able to pay back or pay forward all of the out-of-this-world kindness my family and I have received since my diagnosis. I will not deny, those of you in “my tribe” have seen plenty of tears from me this year! I’ve tried to adopt Jimmy V’s philosophy in his last stages of cancer. He said there are 3 things you should do every day, “first laugh. Laugh every day. Second, think…spend some time in thought daily and third, have your emotions move you to tears!” Works for me! I wanted to share with each of you a gift …some interesting reading possibly for you or a family member… I’ve first been inspired by Robin Roberts in her book “Everybody’s Got Something”. I am keeping all of my journaling and medical notes in hopes I have something to offer those that will encounter neuromuscular conditions in the future. Maybe a book of my own? Second, we have truly decluttered and simplified our stuff, with 3 moves and 2 houses… I enjoyed the book “The Life-Changing Magic of Tidying Up: The Japanese Art of Decluttering and Organizing”. And lastly any family with dementia issues, Alzheimer’s, MS, ALS or Parkinson’s should consider, my now retired from clinical practice Neurologist, Dr. David Perlmutter’s publications: “Power Up Your Brain The Neuroscience of Enlightenment.” Also, the “Grain Brain” and lastly, his newest publication, just out, “Brain Maker.” I believe many answers lie in these observations to our overall health, especially neuromuscular health in the future!

  I pray you and your loved ones had a wonderful 4th of July! What a precious celebration for each of us and our country.

  Dr. Fran explains some supplements she’s taking

  Journal entry by MaryFran Kolp — 7/9/2015

  Warning! For some of you this entry may be very boring, others intriguing. Supplements 101… Many of you have asked what supplements am I taking and why? This may be boring for many of you, but I’ve been asked so I’ll do my best to share. Because I am an exercise physiologist, with a doctorate in the field, I thought I would attempt explaining what I am taking and why. I will just do a few supplements at a time as to not overwhelm or become too long winded on any one supplement. From my study of the energy production cycles years ago, glycolysis, gluconeogenesis, fatty acid oxidation and others…I understand (or once did) the intermediates in these metabolic cycles and the enzymes that support them. Knowing I was given, a no cause and no cure…therefore no treatment disease, we have opted to provide supplemental support for the intermediates in metabolism in hopes of halting, reversing or slowing the progression of this disease. We know nerves die, muscles go limp, structural support is lost and the end process of physical life is severely shortened. But, if we “unpeel the onion” if you will, and address each potential factor contributing or sustaining this disease…we may get some control of it. We may not, but it’s worth a shot!
First, before discussing any supplements, understand I’m on a ketogenic diet. I call it “Atkins diet on steroids”. I consume all organics, free range, grass fed stuff I can get my hands on! Including veggies, many meats and fish, tons of nuts, and a lot of healthy fats. Sugars are neurotoxic. Therefore, no sugar, no grains and 1/2 piece of fruit per day. Actually, it’s not that hard for me. And as others will agree my skin and my waistline really look good! This ketogenic diet most importantly is neuroprotective! Quickly, a good example of nerve damage from sugars are those most commonly seen in diabetic patients. They lose sensation in limbs and sometimes blindness and amputation can result if sugar levels are not controlled.

  The first supplement I am on is developed by Dr. David Perlmutter the author of the” Grain Brain” and other books, and he is also a board-certified Neurologist. This supplement is called nrf2 activator. Nrf2 is a protein messenger carried in every cell of our body. Nrf2 activators presence is necessary to release enzymes necessary to reduce oxidative stress which can be damaging to cells. These enzymes then protect your oligodendrocytes (myelin forming cells) and keep them from dying when under oxidative stress. Anyone with ALS or MS, in my opinion, should be on this support. Google the supplement first and consult with your physician on this before you consider taking it. You may have to educate your physician on this one! Second supplement I take is Inosine. Inosine is a chemical compound found in our bodies. No supplementation is typically required. This compound’s main function is to support transfer ribonucleic acid (t-RNA) which supplies polypeptide chains with amino acids. There is some mention Inosine may help nerve branches (axons) grow from healthy nerve cells to injured nerve cells in the brain and the spine. Inosine assists in supporting muscle movement as well, and in some instances is used by body builders. More research is needed on this topic. There can be some side effects even with supplements so again, Google search this and share your findings with your physician prior to taking this. Third to discuss, L-serine powder and Trehalouse. Serine is found in the proteins that make up the brain and it is found in the protective myelinated sheaths that cover our nerves. It is necessary for proper function of our central nervous system and our brain. Deficit serine levels can cause thinning or deterioration of our myelin sheaths that protect our nerves and affects cell communication within the body. Some folks with fibromyalgia and chronic fatigue syndrome have also been noted as having low L-serine levels. Lord knows naps are a huge part of my disorder and adrenal support and serine really helps me…this supplement is my “cup of coffee” midafternoon! Trehalouse is an unusual disaccharide. It’s composed of 2 sugars (glucose molecules), it has an unusual bond that can tolerate high temperatures and highly acidic conditions without reducing down in form and also acts as an antioxidant. Lastly for tonight, I can’t leave you without one more supplement for the night…adrenal DMG. After extensive blood work on numerous occasions, urine tests, fecal tests and saliva testing. Adrenal burnout was another “layer to my onion”. My adrenal glands were in overdrive! Therefore, instead of an “extra shot of expresso” I take Adrenal DMG! Adrenal DMG supports appropriate adrenal function and cortisol levels. Low cortisol symptoms include difficulty getting out of bed in the morning, lack of concentration, anxiety and depression with a twist of indecisiveness! This supplement has been a notable saving grace for me! Speaking of not being able to get up in the morning I best get to bed! We picked up Megan from volleyball camp at U of M and then we’re off to Grand Rapids for the first summer league AAU tournament at “Brawl for the Ball”! I’ll continue my list tomorrow! Thanks for your continued prayers and support! Sweet dreams!

  More supplements… Not kidding!

  Journal entry by MaryFran Kolp — 7/10/2015

  First and most importantly… Megan had a very successful experience at volleyball camp at U of M! She enjoyed spending time with her cousin Sydney and her childhood -sister- from- another-mother Kira! Ha-ha!! Also, more success for the parallel 45 team Danny is part of in Grand Rapids! They won the first 2 games! Way to go boys! More basketball at 11:30 am tomorrow! Pray they stay healthy and keep winning!

  Now onto some more supplements, Glutathione IV, vitamin B12 shot daily, vitamin D. Glutathione naturally occurs in our bodies. It supports our defense system (immune system) in fighting metal and drug poisoning. It is an antioxidant and assists in detoxifying the liver from heavy metal poisoning. I take an oral supplement daily and weekly I also receive a glutathione IV, Andy gives to me. Often after the IV I feel a little flush and light headed. This feeling goes away about 5 to 10 minutes after the IV is administered. I have had some testing done that has revealed I have heavy metals in my system. We’re not sure why, some thoughts, Mercury from my amalgam fillings? From immunizations? Environmental toxins… The list goes on! Next, daily I give myself a vitamin B12 shot. At first, I would hunt down anyone that would give me the shot! Now I’ve graduated and poke myself. Vitamin B12 is a water-soluble vitamin that keeps your nerves and blood cells healthy. If a vitamin B12 deficiency is left untreated it can lead to anemia, causing one to be fatigued and this deficiency can lead to brain damage. I was severely deficit in vitamin B12 and Vitamin D. Vitamin D is made by the body when exposed to sunlight. Also, consumption of vitamin D helps the immune system fight infection, assist with muscle function, cardiovascular and respiratory efficiency functioning and brain development and anti-cancer effects. In a nut shell, vitamin D manages calcium in your gut, blood and bones to ensure your cells communicate efficiently. Time for bed! Have a peace filled night! I’ll add some more supplements tomorrow! I’m sure each of you are waiting with bated breath for more…ha-ha! Hugs and good wishes to all.

  Supplements continued…

  Journal entry by MaryFran Kolp — 7/11/2015

  P45 basketball boys are successful again! Won their 11:30 game by 20! Unfortunately, the winning streak ended there! Lost our next game. We made a good effort! Off to Romulus next weekend for more hoops!

  On to my list of supplements continued and I’m almost done. Ugh! Ubiquniol CoQ10, Magnesium Taurate, Magnesium Citrate, and Gaba. Ubiquinol CoQ10 is essential in the production of cellular energy. Recall I’m on a ketogenic diet this means my mitochondria (power houses that produce cellular energy) are in overdrive. When CoQ10 is oxidized, it is then used by the body in its reduced form called Ubiquinol. This is the reduced form I choose to take, although our bodies are brilliant and can breakdown CoQ10 for cellular use typically, I am taking a reduced form in hopes that my system doesn’t have to take that “extra step” to metabolize CoQ10, speculating I’m assisting my system. CoQ10 again exists in a reduced form in our bodies naturally, especially in the heart and liver, muscles and kidneys. Next, magnesium taurate is a scientifically designed amino acid mineral complex to ensure maximal bioavailability of magnesium to my system. I often get muscle cramps when my cell salts are out of balance. Magnesium helps me with this problem. Also, I take magnesium citrate, with all the meat and fiber I consume it ensures regularity! In fact, if you travel and have a tough time going (ha-ha), take some magnesium! It’s water soluble so don’t be too concerned about overdosing, but be smart, follow the bottle or consult your doctor or the internet for dosing! This should not be used on a regular basis but a little mag citrate on vacation may get you going. GABA is a neurotransmitter that blocks nerve impulses in the brain. This can help to reduce anxiety and may boost mood and have a relaxing effect! Given my diagnosis, regardless of my faith, some stressful moments still occur! I can’t deny I’m slowing down a bit! Maybe God’s just forcing me to stop and smell the roses along my journey. I hope this Sunday is peace filled for you and your family! Hugs and blessings sent your way! P.S your comments on these posts keep me going! Thank you! I too enjoy hearing back from you!