The Highest Hurdle Read online

  Maggie helped with coordinating meals. She set up a sign-up online (I am pretty tech savvy but not with this kind of stuff). She also found the blogging app, CaringBridge. She would also get Andy’s work schedule and the kids’ sport schedules and put them on a Google calendar. She was pretty much my copilot.

  Even though we filled out the forms and made up binders, we did not use them like we thought we would. We decided what worked best was the captains of the week would just handle everything themselves for their week. We all liked to know that it was our week with Fran. If the three or four people didn’t have coverage, then we would reach out to others in the group.

  Some of the captains also decided to do specific jobs weekly. Julie would come and clean either every week or every other week. Jen and would come do baths on Tuesdays and Thursdays. Cheryl H. would come and cook special meals for Fran on Wednesdays. Others would just stop by and throw a load of laundry in or come and see if dishes needed to be put away even if they weren’t “on.” Usually, it was an excuse to stop by and say hi to Fran. Kim S. was our holiday-decorating extraordinaire.

  Andy’s sister Terri was always around to help, too. Initially, she wanted to be a captain, but we refused to put her on the list. Our reasoning was that she was already doing so much; we did not want her added on and feel like she was obligated to do more than she already was. Everyone should be so lucky to have a Terri in their life.

  They pretty much had an open-door policy at the house. We had to come up with a sign system for “bad days” or days that they did not want visitors. If the green smiley face was showing, come on in. If the red sleepy face was showing, come back later. We also had a rule: if there were three people already visiting, come in and say hello, then come back later. Even though she loved a good party, the further along she progressed it was harder for her to handle a lot of noise and commotion.

  By fall of 2017, we decided to increase the amount of people on each week to a minimum of three ladies. By this time, it took two people to help shower her and to help her move from place to place in the home, as she was still able to walk with help. We also needed someone to be with her at all times, especially when Andy was at work. At this point, we had our “showering” ladies, “bathroom” ladies, and “putting to bed” ladies. Having these assignments lessened the amount of people having to do her personal care. It also helped her retain some dignity by not having everyone attend to these essential duties. Since she had lost the use of her hands first, she needed help feeding, dressing, and all personal care.

  By the winter of 2018, we had twenty-four active captains. These ladies were an essential part of MaryFran’s care! A couple were nurses, but all were friends of MaryFran’s and not all of us knew each other in the beginning. I can honestly tell you that we are now bonded for life through this journey, and there were no fighting or disagreements. We always came together to help. It wasn’t always easy. But then life is never easy.

  Last Stages of Moving

  By MaryFran Kolp 2/18/2015

  Hello Friends! Great news for the Kolps! Dana, our niece, is doing much better and back to school! We are almost done with renovations before we move in our home…and we are so excited!!! Thank you all for your prayers and blessings and your physical help!!! We have some final dates and some areas where we could use some help to get us through this, hope to be, final process!!! Movers are coming Friday, February 27th therefore, if anyone is willing to help transport/pack smaller loads on Monday, February 23rd between 11 and 1. Or Tuesday, February 24 from 12-2 or Wednesday, February 25th 11-1. Or clean Reycraft on the 26th…any or all help is appreciated!!! No pressure just if your schedule permits you to do so! Thanks everyone!!!

  Moving this week

  By MaryFran Kolp 2/23/2015

  Thank you in advance to all of you for your help moving this week! Since it’s so cold today we will focus on boxing up some things and carrying some boxes and crates from the basement up and possibly start cleaning! Since it’s so cold I don’t want people freezing doing multiple trips to the Petoskey house today! Having said that could some of you check for boxes and bring newspaper for packing stuff? See some of you at 11!

  ShNIKE’s moving is almost complete

  By MaryFran Kolp 2/25/2015

  What an amazing and blessed team we have had in this second or third and fourth moving process! We are almost done moving from the Reycraft home to the Petoskey house! The majority of our items have been so graciously moved! Tomorrow will be a big cleaning day at the Reycraft house. Anyone that has some time is welcome to come help. We have a few more loads to be transported. And then we will be cleaning from top to bottom the Reycraft house. Anytime between 9:30 a.m. until noon! I don’t expect it will take that long! Hugs and thanks to everyone! Blessings and thanks!

  Moving update

  By MaryFran Kolp 2/26/2015

  Great progress! Friday movers come to get the big stuff at 9am. Some cleaning and transporting some items, like plants and hamsters are needed, but no pressure if you’re crazy busy…I’m just putting it out there but hope to not put anyone out! Hugs to all! I’m hanging in there! I can say certainly without the help of many I don’t know how we could have done this move! Andy and I both are spinning! Thanks to all of our gracious help with sugar and whip cream and a cherry on top! Next steps, Andy may need assistance from someone or two with trucks to get a few things, like tools and such from the garage… If anyone has a truck and doesn’t mind a little dirt 10- noon on Saturday, he could use your help! Please call Andy and let him know you can lend a hand!

  Kolps are moved in but not yet settled

  By MaryFran Kolp 3/4/2015

  We can’t begin to thank all of you that have made this move as smooth as possible! I must admit once moved I thought things would get easier with the house but sorting boxes, deciding what goes and what stays and where it goes has been a little crazy! The kids’ social calendars have picked up momentum, just as we hoped it would! Friends in and out…we’re loving every minute of it!

  I must admit health wise I’m tired but who wouldn’t be, even under normal circumstances!

  As for medical updates…I am doing one day at a time! We are looking forward to going on spring break with family to Florida and spending time with my folks and the Collins family. The kids can’t wait! After that, Andy and I will be visiting some specialists in the San Francisco Bay area in April on neurological disorders and detoxification of mitochondria! It will be interesting.

  We are almost through the final stages of moving in and renovations for this phase. If you have some time or energy not compromising your own family needs we will love an hour or two to help with whatever… Carrying boxes or gifting of items to Salvation Army or the Women’s Resource Center, cleaning, organizing… Will gladly take an hour or two or come have tea! Hugs to all of you and again thank you for your prayers and support!

  During this time, I found out that another young woman in our area was dealing with ALS. MaryFran wanted to visit her. We set up a meeting and MaryFran asked me if I would drive her to meet her, as she lived about forty-five minutes away. The young woman was in her early thirties and had a young son. She unfortunately did not have as much help as we did. She was in fairly-advanced stages and could barely speak. It was very sobering for MaryFran to see and the drive back home was terrible. MaryFran kept saying, “I cannot believe I’m going to end up like that.” It was one of the first times in my life when I honestly did not know what I could say to her. I just told her that she was going to be trying different treatments that this other lady had not tried, and that hopefully she would not end up like that. It took everything I could do in my power not to break down and cry uncontrollably. I kept thinking, this cannot be possible. She asked me if I thought she should try alternative treatments. I told her that if I were in her shoes and they told me I had to drink horse pee, I would. It became a joke between us. Unfortunately, this young lady died on January 14, 2018.

  My first fa
ll but humorous story

  By MaryFran Kolp 3/13/2015

  I just felt I had to share the story. Yes, I had my official first fall… But was it really a fall because of ALS? On my way to La Dolce Vita, the best salon in town in my opinion, as the ladies at the salon have really taken care of me and offered treatments to keep me going since my diagnosis! On with the story… I was getting ready to go for a pedicure. When I drove my car and parked I had contemplated in the middle of March with snow banks still piled high in Northern Michigan whether I should hurdle the snow bank in flip flops, or walk around and put money in the meter that way? I proceeded to hurdle the snowbank wiped out on my caboose and had re-created the reenactment of Ralphie from the Christmas story movie with my glasses all plugged up with snow! So, a lesson learned…don’t hurdle snow banks in flip flops!!!

  Moving update

  By MaryFran Kolp 3/13/2015

  We are officially moved in! New carpet is due to arrive next week. Then we’re taking a break, to do taxes and start saving to do more with the house later this year! We absolutely love our kitchen! Most of our painting is complete due to “two chicks and a stick” Julie Izzard and Lynn Rawson are amazing painters they don’t even tape off! We are really enjoying the house, especially its location! It seems like weeks ago when we were trying to move all of our belongings in - 13 to - 23 degree weather. With snow blowing sideways! And dust still flying at our new destination to be called home due to renovations!

  To top it off…We also survived moving without Andy’s truck due to his third accident all of which he wasn’t even near his truck when a semi took the whole side of his vehicle out! While he was enjoying a coffee at North Perks! So, there we were moving without our truck. But, due to many of you and your vehicles we were successful and getting everything moved over! We still can’t believe all of the help and support not one time not even 2 times but assisting us in moving 3 times all within a 6 month time period! Crazy! Lastly, life continues to happen as the heat has gone out twice in our new house. Luckily, I think the problem is now fixed! Maybe we’re destined to be cold this winter! Thanks again for stepping up and all your help, moving, painting, cooking, meals, support, cleaning, sorting, putting my closet together and love! Hugs and blessings to all of you!

  Spring is in the air

  By MaryFran Kolp 3/20/2015

  I am sitting at my new counter, in my new kitchen, with my old dog counting my blessings! So many of you, and others, have just stepped up or stepped in and just did what needed to be done to get this house and my family in working order. It was done with love and true gratitude. We truly don’t deserve this beyond spectacular help and treatment! Your prayers, support and actions have fed our bodies and souls. Thank YOU, no-matter how much or how little you feel you’ve done, it’s been huge to us!

  Medical update…Yesterday, I had an appointment with, my local physician Dr. Greg Putalik. He has been very supportive of me and in working with the groups of physicians and health professionals contributing their knowledge to my case! My appointment went well! I haven’t progressed. Not better but not worse. I am stable. Also, I’ve put on 4 lbs. That’s good for me! Thanks Cheryl Hooley to tastefully increasing the fat and calories in my diet! Or maybe it’s weight gain by osmosis! I’ve been frequenting Julienne Tomatoes picking up pecan rolls for our helpers at the house!

  Now that I am in a stable state I have decided to push forward with alternative treatments. We can’t beat this wondering when it’s going to progress and how…therefore, no cause no cure…press on. Andy and I will be leaving for the San Francisco bay area in late April. I will be seeing and receiving treatment from 3 specialists. Dr. Stephen Feig, D.O., Dr. Lin, D.O. and Dr. Beth McDougal, D.O. Dr. Feig has been my sounding board and has prepared me with supplements, referrals and support while preparing for my visit with Dr. Perlmutter in Naples. If you haven’t checked out the book “The Grain Brain” written by Dr. David Perlmutter, do so…dementia, Alzheimer’s, ADD… Neurological disorders… Something in there for all of us or our families. Good news for Dr. Perlmutter he’s retiring. Happy for him as he will be retired but still working in the field of neurology rumor has it, ALS research! I will be working closely with Dr. Feig and some of his colleagues. Dr. Lin, DO is a structural wizard and uses a lot of energy work. Also, Dr. Beth McDougal, DO her emphasis is mitochondrial detoxification. I will be going for an evaluation and a treatment. I have been continuing with acupuncture and cranial sacral therapy with Helen Diriglio at Root Health these past few months. She has assisted my body in amazing energy movement work. I highly recommend her. Also, I have been working with Flora Waters utilizing homeopathic remedies to provide support for my systems and organs where needed. I too am so grateful for the hand, wrist and shoulder therapy from Dr. Fred Wroblewski’s Hand Therapy of Petoskey and PT support from the Budnicks at Orthosport. Some may think I’m a little crazy doing all this alternative support. I am crazy, but it’s working, helping anyway…traditional medicine literature regarding ALS doesn’t impress me yet. Time will tell! As for hyperbaric oxygen treatments, I’ll get back to them, but for now financially I have selected to stay local and focus on acupuncture/cranial sacral therapy. I miss hyperbaric but with moving and traveling with Megan to her AAU tournaments for volleyball… I haven’t been able to get downstate to fit them in. As for immediate next steps, thanks to the assistance of Marie Law I am in the process of doing voice recordings in the event disease progression expedites and I can no longer yell at my children Ha-ha! I hope I don’t need this for a long time but its best to over prepare! I apologize this is pretty long-winded but wanted to bring all of you up to speed. Your continued prayers are felt and appreciated! More than you’ll ever know! Happy spring!!!

  Happy Easter to all!

  By MaryFran Kolp 4/4/2015

  I hope all of you had a great spring break and Holy Week! Happy Easter to all of you! We had a fabulous break in Fort Myers Florida! We were blessed to hang with some of our friends and family over break! My folks, the Collins family, Law and Hammond families, the Kromms, the Kirbys, Burnhams, Jakeways, O’learys and new friends Rex and Nan!!! With sand on our toes, great food and beverage and gorgeous weather & great socializing… What a blessed blast! It felt so good to thaw out! I pray too you had a wonderful Easter celebration wherever you may be! I so enjoyed the warm weather! I attempted to pack some warmth and sunshine in my suitcase for home! We’ll see what happens!

  Our next journey is a visit to Mill Valley, California to see specialists in April! We’re still working on this illness day by day! We will be staying part of the time with the Collins family in between appointments, we look forward to some positive direction from the docs in California! I had a lesson in HOPE watching March madness basketball…Anyone watch the final four Kentucky Wisconsin game? Kentucky was a stacked team 38-0 this season…. But once again I was reminded nothing is impossible… Wisconsin beat Kentucky… And Wisconsin will be playing in the national championship game against Duke! With will power and hard work…you always have a shot! Nothing is impossible is it? I’ll remember this in my daily struggles! I hope you will too! Happy Easter! May you appreciate what our Lord has given you!!! Always remember you are very special and more than enough… You are made in his image, never underestimate the power in that alone!

  What’s MaryFran really feeling

  By MaryFran Kolp 4/5/2015

  I had hoped the sunshine and warmth I packed in my suitcase would have made it at least 24 hours to Northern Michigan Ha-ha! Mother nature had other plans as I watch the snowflakes fall on the bushes in our backyard! As for this post I’ve been texted and emailed by many of you…how am I REALLY doing? So, I thought I would share a little more, it too will help me work through my answers to this question. Like Robin Roberts says, “everybody’s got something!” This journey with ALS has shown me I am loved more than I deserve by those around me, my family, friends, church and community, even friends from the past, high school and college have con
tacted me and we’ve caught up and reconnected. This has been a pretty incredible experience! I usually don’t mind being the center of attention, but this has been a different experience. I’m not sure if it is fear that I’m going to wear out the help I have? Or that I’m going to really need a lot of help in the future? Or If I beat this disease people will question whether I had it at all. I do believe this journey has a lesson in it. Don’t think I’m not frightened from time to time I asked why me? Why ALS? In response, Why not me? I’m not sure if I’m supposed to show people how to live? Or how to die? There are a ton of emotions and questions, as you can imagine, that go along with this. That now I’m forced to face. Some days I feel like I can beat this, hands down! Other days, I think about getting my voice digitalized because I may lose it… So like Marie Law says, “Plan for the worst and hope for the best!” I think about writing letters to my husband and children and friends if I proceed to the other side before they do. And then there’s grandchildren and great-grand babies. I will be with all of them but differently! The thought makes me sad to not be here, if that’s what God wills, but if it is, I must trust, and you should too.

  I have to say this Holy Week and Easter season has been different from others for me. I put myself in Jesus’ shoes in the garden of Gethsemane. What a deep faith but torment he must have felt. No words can explain his journey. While myself being sick and knowing what I might die from and the potential grueling end process, it is scary, but I BELIEVE in the after physical life. I have too!!! If I’m made in God’s image this can’t be it. But I do think we’ve seen glimpses of it here on earth. A sunset, a new born child, first steps, making love with your spouse after a nice glass of wine by the fire place, smiles, Christmas morning in a child’s eyes, new carpet…a gourmet kitchen finished… ha, ha, ha, ha, …don’t you agree? Jesus died a gruesome death for us all. I offer up my suffering to others that are sick, poor, lonely, or in pain or contemplating abortion. I think, children’s prayers are heard first… But you move up on the list when sick too. So, if you need a prayer please let me know!