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My friend and colleague Br. Vito passed away on Feb 28th. Losing Vito has been difficult. We worked so closely and really enjoyed our work. It’s such a mystery that we both fell ill at the same time. Vito was a wise, compassionate and humble man who taught so much by his witness. He provided me tremendous spiritual guidance and support as well. He will be greatly missed. My hope was lost when Vito declined. We both believed in miracles and that we would be healed. Initially, I felt angry that our prayers were not answered. Eventually, I came to terms with the belief that, like a loving parent, God always answers us, but not always with the answer we want to hear. I’m reading a great book, that Fr. Bob Cook shared with me, ‘’Lessons from the School of Suffering” about a priest my age with terminal cancer. Our beliefs, fears and hopes parallel greatly. Somehow it’s comforting to share these feelings with a seemingly beloved priest, as though my thoughts are validated. He writes, “I do not know what my future holds, but I do know who holds my future.” The line is powerful when you’re living with such uncertainty. I’m not sure what the outcome of our prayers will be, but I am confidant God will be with me wherever this journey takes me. We are off to Germany in a couple weeks for the stem cell procedure. A very generous friend donated her miles which allowed us to fly business class round trip. I can’t thank her enough for this gift of comfort. Please pray for a safe journey and good results from the stem cell.
Photo from our Disney trip in December 2009
Sorry its been so long since I’ve written. Tonight I was asked by a good friend to please get back to my blog, so here I am. Thanks Peg! A lot has happened since November. Let me start with a most remarkable December night….. As I was walking out of the bathroom, I noticed my feet moving more fluid than normal. I asked Dan to let go of me and lo and behold, I was walking on my own! Very small steps with bad posture, but on my own. I walked all the way to my bed! It had been many months since I’ve done this. I did it again the next day. Strangely enough, earlier that day I read the reading of the day from Mathew. It told the story of the two blind men asking Jesus to cure them. Jesus asked them if they believed He can and they replied yes-and they could see. After the excitement of walking, I went to bed reading my book of daily inspirations by St. Teresa of Avila and the message of the day was from Paul, “All things are possible in God.” Divine intervention? I think so. And it made for a great day filled with gratitude and hope. The holidays were great. I continued taking more steps. I enjoyed every moment, thinking only about the present moment. We went to Disney the week before and had a nice time, lots of special moments with the kids. Disney was ok, but time away from everything but family was priceless. I had a little accident on 12.29… My brother and I were walking into hyperbaric, he was getting the door to go into the building and somehow I lost my footing. He went to grab me and we both slipped on some ice and fell. I hit my head pretty hard. I got three stitches in my head. After a ct scan, mri and 11 hours later the results came back showing a hematoma at the site of the wound and some bleeding in the back of the brain. They had to transport me to Hinsdale hospital’s Neurology ICU for observation. I stayed there overnight and a new scan on Wednesday showed less bleeding, so I got to go home. Unfortunately, the fall took a toll on me. I took 5 steps back after my miraculous steps forward. I was pretty weak with a touch of vertigo for a while. However, as of today, my overall strength has returned, yet my balance is still off and my voice is very weak. Hopefully, they will both improve in time. I’ve taken a leave from work to focus on regaining strength and weight. I feel our vacation, the holidays and the fall really took a toll on me. My hope is this new time will allow for healing with a focus on prayer and various treatments; exercise, acupuncture, pt, and hyperbaric. Strengthening has become even more crucial now, because we have decided to go to Germany for an experimental stem cell procedure. Germany has been performing this procedure for a few years. The stem cells are taken from my own bone marrow. About 45% have seen improvement. We spoke to an acquaintance with ALS who just returned home from Germany and was very positive about the experience. We hope to go in March or April. My mom has said she feels I have a spiritual shield protecting me because I smile so much and I am beginning to believe it myself. While there are many tear filled moments, I still marvel at how God’s presence has given me peace, strength and hope. Please keep my family and me in your prayers, along with my dear friend Br. Vito. The power of prayer keeps hope alive.
I seem to have come out of my slump. After taking time off of work and doing much soul searching, praying, reading, crying, sharing my feelings with family and friends, I feel more at peace. I continue to try to surrender; to put this into God’s hands with total trust. It’s difficult to do this in my mind but is becoming easier in my heart and soul. I am learning to dismiss those things, places or people that distract me from feeling at peace. It’s amazing how many distractions are present in our lives, distractions that keep us from the Lord and who we could or should be. Had I known then what I now!
I went back to hyperbaric while I was off work. I noticed an improvement in my voice and overall strength. I will continue to do monthly “mini” treatments to track whether it is helping. I’m back to physical therapy for general als symptoms but mostly for my shoulder. It is helping a lot. My range of motion is beginning to return in my right arm. My PT comes to my house 3 times a week. She is awesome (Southwest Physical Therapy). I’m still eating organic. My mother in law just brought a batch of homemade organic choc chip cookies-what a treat! I stay away from sugar for the most part, but these are definately worth cheating! I’m at Marist three days a week and continue to spend every weekend going to the Marist football games. This weekend they play Glenbard North to go downstate! Wish them luck.
Not much more to report. As my voice gets weaker I look forward to emails or blog messages so please say hello and let me know whats new with you! I’m also enjoying visitors and am pushing myself to get out more. One day at a time, I try to live in the present and keep God’s presence in my heart, mind and soul. Life is so much easier this way. Please continue to pray for peace and healing for my friend Vito and me. God bless
I’ve taken a couple weeks off of work to do therapy on my shoulder and to regroup. I’m also doing hyperbaric oxygen therapy again. Being home has proven to be difficult-too much time to think and I really miss work. My favorite time is in the evening, sitting around the table with Dan and the kids. Life seems so normal. Marist football games are also great, although a bit wet and cold. Again, sitting in the stands watching the game takes my mind to a better place, and life seems normal. And they are having a great season. One of my new favorites is playing Rumicube with the O’Neils-our new weekend fun. Anyone care to join in?
I hope to go back to work soon. Also thinking of a family get away. Looking for Disney vacation on a smaller scale. Let me know if you have any ideas.
Please continue to pray for peace and healing. Thank you.
God bless
I have had a difficult month. My right shoulder has been bothering me and they found a spur rubbing against the rotator cuff. It has limited my use of my arm even more. I tried a cortizone shot to no avail. My voice has become quite weak also. I guess as a result I’m feeling pretty down as my hope fades. Please continue to pray for hope, strength and healing.
Thanks once again to the admin at Marist. Working five days proved to be too much so I am now working four days, one of them from home.
Thanks also to Sue Olo and Beth and Susan for their delicious organic meals and to my Fisher friends for cooking for the family.
It’s been awhile since I’ve written. Getting back to work has made for a very busy life once again. We’ve been enjoying our Friday night football games at Marist;good weather, good friends and a 4 and 1 record! We face highly ranked Joliet Catholic next week for homecoming. Should be a good game. Hallie and Luke will be going to the homecoming dance and Emily just went to her first St. Linus homecoming dance last night. We had the pleasure of having fifteen 7th grade girls here for pictures! It seems like yesterday we were at the Rita football games and McAuley dances. How time flies!
Nothing much new. I continue the regimen of meds, shots, organic food. Hoping to get back to acupuncture and massage soon. No obvious effects from the HBO although my energy seems a little better.
Friends and family walked the two miles along the lake on a beautiful Saturday morning to make the ALS walk a success. Thank you to all who joined us! We had over sixty Marist kids, teachers and administrators. Representing our family was everyone from our beautiful two month old, Owen Olofsson to my eighty three year old mom, Dee O’Neil, and so many in between. It was wonderful to see so much support.
Thank you to the “good samaratin” who has hired our favorite chef, Colleen, to cook for me. Colleen is the chef at Trio Restaurant who has been preparing organic meals for me when we go to Trio. She makes a special trip to Whole Foods each time I go. Now, thanks to a good samaratin, she is bringing organic meals to my home. Thank you Colleen and thank you to my mystery angel.
Another special thanks to Alyssa Adasiak. Alyssa is a friend of Emily’s. I recently found out she took it upon herself to make her own flyers and went out on her own to collect donations for my benefit. She raised $375! Quite a success for a twelve year old girl. Thank you so much Alyssa. It means so much to me.
These stories and so many others I have witnessed are constant reminders of the goodness of people. Goodness that appears quietly. Recently, I’ve thought a lot about humility. Strangely, this virtue has surfaced daily for me; in books I’m reading, emails, discussions and in the daily readings of the mass. In today’s world of promoting one’s self, pushing self confidence and self esteem and the “me” generation, it can be difficult to be humble. It is a virtue I have not possessed but am striving to achieve. My brother Steve gave me this simple advice, “let humility prevail everyday but let self esteem carry you through quietly.” Makes perfect sense.
My hyperbaric oxygen therapy is over. Thanks to all my drivers and for the many of you who offered. Special thanks to my brother Bill for driving so often! Hopefully I will notice some improvements.
In my last posting, I mentioned that I spoke to the sophomores at Marist as part of a special project. Since then, many of you asked to see it. So here it is…
ALS IS A MOTOR NUERON DISEASE The motor neurons die, causing the connection from the brain to the muscles to fail, so my muscles become very weak, making it hard to do simple things. They say it is rare, but I don’t believe it. I have met or heard of several people who also have it. Its been around for over 100 years and there is still no cure. I’m fortunate to be doing a lot of experimental treatments right now. I would ask you to work together to help raise money and awareness so we can find a cure.
Daily impacts…
EVERYTHING TAKES MUCH MORE TIME. As you already observed last year, my walking is pretty slow. I used to run 3 miles in a half hour, now it takes me 30 minutes to walk a few blocks. And as you have probably noticed by now, I talk slower too, and it’s worse when I’m nervous, so please bear with me. Everyday things like tying shoes, buttoning, cutting food and writing are difficult if not impossible
THE GREATEST IMPACT HAS BEEN THE REVERSAL OF ROLES IN MY LIFE: My family takes care of me much more than me taking care of them. Lost independence; I rarely go out by myself, someone is with me for simple things like taking a walk, going shopping.
Most days are spent working and then doing various treatments, therapies, acupuncture and hanging out at home because I get tired very easily.
I HAVE ALWAYS TRIED TO FOCUS ON THE POSITIVE SIDE OF THINGS AND BELIEVE IT OR NOT I HAVE FOUND SOME POSITIVES.
As my life has slowed down I have more time to enjoy the really important things in life: The simple things you always are suppose to appreciate, but can’t find the time for. I’m still the same person inside. I’m much more aware of the blessings in my life. I spend much more down time with my family. I spend a lot more time with God and really feel God’s presence. These things give me a great sense of peace. I know you probably don’t think about it much as sophomores, BUT MY HOPE FOR YOU IS THAT YOU WILL LEAVE MARIST WITH A STRONG FAITH.
Future Outlook…
I don’t think about the future too much anymore. I HAVE FINALLY LEARNED TO LIVE IN THE PRESENT. I have put my faith in the Lord and the family and friends with whom He has blessed me. I try to do the very best I can with what I have, knowing God will take care of me.
I take one day at a time. I love working here at Marist. I have a wonderful husband and three great kids whom I love more than anything. Life has been good to me.
I used to spend a lot of time sweating the small stuff. Worrying about things I can’t control-what a waste of time! I no longer do that, which makes the future look much brighter and the present a better place to be.
Support…
I can’t begin to tell you how the support of family and friends has helped me through this time. IF I CAN PASS ALONG ONE THING TO YOU IT WOULD BE TO STAY CLOSE TO YOUR FAMILY AND FRIENDS, NEVER TAKE THEM FOR GRANTED. Having people who love and care for you makes the good times better and the difficult times so much more manageable. I have been truly blessed with overwhelming support. My husband is always by my side and my kids take great care of me. They also bring so much love and laughter to each day, which is the best medicine in the world! One of my sisters has gone to every doctor’s appointment from Northwestern to Mayo Clinic in Minnesota to Naples, Florida. She comes over twice a week to give me shots. My other sister, Mrs. Gainer, takes care of me here at work as well as home. She’s there to help me with laundry, cleaning the house or just be with me. Mr. Duffy’s sister cooks several meals for me every Sunday because I am on a special diet. My other sister also cooks for me. I’ve been fortunate to have so many great people in my life take care of basics like cooking dinners for my family, driving me different places and shopping for us. The people at Marist have made it possible for me to come back to work. Mrs. Pochyly even decorated my living room!
My family planned a healing mass for me when all this began. On December 23rd, St. Linus Church was filled with family, friends and students wrapping me in prayer. What a wonderful feeling! The next day, on Christmas Eve, our good friends stopped by with baked goods and a box of cash, donated by our St. Linus friends. This summer family and friends organized an awesome benefit, which I know many of you worked and attended, and I really appreciate that. These acts of kindness have allowed me to continue my experimental treatments. But most importantly, THE PEOPLE WHO SURROUND ME OFFER CONSTANT LOVE AND PRAYERS. AND WITH THAT, MY FAITH AND HOPE REMAIN STRONG.
Thank you for listening to me and for working together toward this cause.
My hyperbaric oxygen therapy is over. Thanks to all my drivers and for the many of you who offered. Special thanks to my brother Bill for driving so often! Hopefully I will notice some improvements.
In my last posting, I mentioned that I spoke to the sophomores at Marist as part of a special project. Since then, many of you asked to see it. So here it is…
ALS IS A MOTOR NUERON DISEASE The motor neurons die, causing the connection from the brain to the muscles to fail, so my muscles become very weak, making it hard to do simple things. They say it is rare, but I don’t believe it. I have met or heard of several people who also have it. Its been around for over 100 years and there is still no cure. I’m fortunate to be doing a lot of experimental treatments right now. I would ask you to work together to help raise money and awareness so we can find a cure.
Daily impacts…
EVERYTHING TAKES MUCH MORE TIME. As you already observed last year, my walking is pretty slow. I used to run 3 miles in a half hour, now it takes me 30 minutes to walk a few blocks. And as you have probably noticed by now, I talk slower too, and it’s worse when I’m nervous, so please bear with me. Everyday things like tying shoes, buttoning, cutting food and writing are difficult if not impossible
THE GREATEST IMPACT HAS BEEN THE REVERSAL OF ROLES IN MY LIFE: My family takes care of me much more than me taking care of them. Lost independence; I rarely go out by myself, someone is with me for simple things like taking a walk, going shopping.
Most days are spent working and then doing various treatments, therapies, acupuncture and hanging out at home because I get tired very easily.
I HAVE ALWAYS TRIED TO FOCUS ON THE POSITIVE SIDE OF THINGS AND BELIEVE IT OR NOT I HAVE FOUND SOME POSITIVES.
As my life has slowed down I have more time to enjoy the really important things in life: The simple things you always are suppose to appreciate, but can’t find the time for. I’m still the same person inside. I’m much more aware of the blessings in my life. I spend much more down time with my family. I spend a lot more time with God and really feel God’s presence. These things give me a great sense of peace. I know you probably don’t think about it much as sophomores, BUT MY HOPE FOR YOU IS THAT YOU WILL LEAVE MARIST WITH A STRONG FAITH.
Future Outlook…
I don’t think about the future too much anymore. I HAVE FINALLY LEARNED TO LIVE IN THE PRESENT. I have put my faith in the Lord and the family and friends with whom He has blessed me. I try to do the very best I can with what I have, knowing God will take care of me.
I take one day at a time. I love working here at Marist. I have a wonderful husband and three great kids whom I love more than anything. Life has been good to me.
I used to spend a lot of time sweating the small stuff. Worrying about things I can’t control-what a waste of time! I no longer do that, which makes the future look much brighter and the present a better place to be.
Support…
I can’t begin to tell you how the support of family and friends has helped me through this time. IF I CAN PASS ALONG ONE THING TO YOU IT WOULD BE TO STAY CLOSE TO YOUR FAMILY AND FRIENDS, NEVER TAKE THEM FOR GRANTED. Having people who love and care for you makes the good times better and the difficult times so much more manageable. I have been truly blessed with overwhelming support. My husband is always by my side and my kids take great care of me. They also bring so much love and laughter to each day, which is the best medicine in the world! One of my sisters has gone to every doctor’s appointment from Northwestern to Mayo Clinic in Minnesota to Naples, Florida. She comes over twice a week to give me shots. My other sister, Mrs. Gainer, takes care of me here at work as well as home. She’s there to help me with laundry, cleaning the house or just be with me. Mr. Duffy’s sister cooks several meals for me every Sunday because I am on a special diet. My other sister also cooks for me. I’ve been fortunate to have so many great people in my life take care of basics like cooking dinners for my family, driving me different places and shopping for us. The people at Marist have made it possible for me to come back to work. Mrs. Pochyly even decorated my living room!
My family planned a healing mass for me when all this began. On December 23rd , St. Linus Church was filled with family, friends and students wrapping me in prayer. What a wonderful feeling! The next day, on Christmas Eve, our good friends stopped by with baked goods and a box of cash, donated by our St. Linus friends. This summer family and friends organized an awesome benefit, which I know many of you worked and attended, and I really appreciate that. These acts of kindness have allowed me to continue my experimental treatments. But most importantly, THE PEOPLE WHO SURROUND ME OFFER CONSTANT LOVE AND PRAYERS. AND WITH THAT, MY FAITH AND HOPE REMAIN STRONG.
Thank you for listening to me and for working together toward this cause.
I just completed my first week back at work, ending it with an awesome Friday Night Lights at Marist. Marist killed CVS 54-14. Luke had a pretty good game as well. Hallie and Emily were in the crowd, not really watching the game but being fans nevertheless. Who would have thought the highlight of my week would be watching Luke and his buddies play football! (Three years ago, my dad and I offered him $1500 not to play fb.) It was a busy week going from HBO to work., but it felt great to be back. My new working buddy, Margie Sweeney, has made coming back a breeze. Marist and I are so lucky to have her.
The progression from the summer became more apparent getting back to work. My hands have lost a lot of muscle, so things like writing, opening envelopes and pulling files are difficult. My voice is weaker too, but God willing, it will remain with clarity. The speech path at Northwestern felt the muscle strength was still very good. Perhaps my diet and supplements are doing something though, because I feel more focused and my memory actually seems to be better. My hope is to work M-F this year with shortened days. As always, I will take one day at a time.
As the new year begins, I have much support from everyone at Marist and great inspiration from my good friend and Marcellin partner, Br. Vito. Vito was diagnosed with Stage 4, Esophogial Cancer six months before I was diagnosed. He has been going through chemo for over a year, yet never misses a day between treaments. He has provided me emotional and spiritual support as we often walk our individual journeys together. He inspires me by his faith in the Lord, his committment to work and his unique sense of humor. Please pray we both have a successful year. Also needing your prayers, two other members of our department, Maggie Rief and Holly Cox. (The four of us make up half the dept. so please squeeze the beads hard!)
The week was filled with many emotions, but Wednesday in particular, was quite special. The administration and campus ministry developed a plan for each year level to work toward a cause as a year long project. Providing support, service and spirituality to the cause would be the theme. I was asked to be the “face” of the cause, ALS. Hallie asked if I would work with her class, so Wednesday morning, I found myself telling my story to 475 sophomores, teachers, counselors and admin. I spoke of the daily impacts of ALS, my faith in God, how I look toward the future and the tremendous support I have received. Dan, as always, was by my side. I was nervous, yet comfortable. I feel privileged to have been asked and blessed to have a great group of kids supporting me and others with ALS.
I’m running out of steam so I will stop here. As I read over this post it sounds like an ad for Marist! Obviously, I love Marist. I feel fortunate to be part of the family and that my kids are experiencing it as well. Next post, hopefully feeling positive effects from HBO-3 more left.