Marlene's Page
... about me
April 2006:
Dear Friends and Family,
Welcome to our web site. I hope it helps you understand a little more about the disease and what we have been doing and activities that you may like to participate in. I would like to thank Tom, my husband, for creating, organizing and updating our web site. He's done a wonderful job.
It's been about two years since my official diagnosis (unofficially two and a half years) and we are doing well (at least as well as can be expected). Physically, my walking has gotten weaker so I now use a walker in the house and a scooter for outdoors. I stopped driving last spring so most of my shopping (including groceries) is done via the internet. I no longer have much hand strength so caring things and writing has become very difficult. My handwriting is legible just not very neat. I am still able to feed myself and my appetite is very good. My physical limitations have been hard on the whole family. It's not my nature to sit around and watch other people do my work and it's very hard to always ask for assistance. I am so thankful that Anna comes every day. Her being here has allowed me to continue taking care of my family and our home the way I would if I physically could. She never says “No.” Christian adores Anna. He races to greet her at the door every morning. My parent’s stop by everyday to see how they can help. Christian enjoys going to their house and I enjoy a little break.
Mentally, dealing with the disease is difficult. I have spent the past several months creating movies from pictures taken over the last five years for Christian. Although it has been fun making the movies, it is hard to acknowledge the progression of the disease. I prefer to go through my day without comparing myself to the previous day and just try and live for today in the body that I have been given.
Over the past year, Janet has been able to visit several times. It is a treat for the whole family when she comes. The months of March, April and May, she will be in Adelaide Australia, with her family. Dan is working on a research project. If you wish to learn about their trip, visit their web site http://training.incolsa.net/rusyniak/
Through my Clinic, the ALS Hope foundation in Philadelphia, I was involved with a clinical trial for arimoclomol created by www.CytRx.com. It was a 16-week trial, multi-dosed, placebo-controlled trial, which required me to go to Philadelphia every two weeks. My father was a good traveling companion. I will never know if I got the placebo but in a few weeks I am a guaranteed to receive the drug in open label. This probably is not “THE” drug we would all like to cure the disease, but it is a drug that has showed nice results in the mouse. One can only hope. Everyone at the ALS Hope Foundation has been wonderful and they keep me up-to-date on clinical trials on the horizon. At the moment, there is no magical cure. Some ALS patients have gone to China, but from those we have spoken to, the effects have been short-lived. We continue to believe that this is in God’s hands and with prayer we will get through this. I'm still waiting for that miracle. In 2005, Tom, Christian and Anna came with me to pray in Calabria, Italy with Fratel Cosimo. It is a very spiritual place.
During the day Christian is my big helper. Like every four-year-old, we have our moments, but at the end of the day, he is a very loving and caring child. Christian is growing very fast and is looking forward to his fifth birthday in September. We are already planning the party - his favorite event of the year. Next school year, Christian will be in Pre-K and going five days a week. He enjoys learning, sports, and especially play-dates.
This summer we are planning a 10-day trip to Germany. We hope to spend one day at Legoland in Denmark. My aunt was able to secure a scooter for me on Foehr. Other than that, Christian is registered for soccer camp, Vacation Bible School and hopefully swimming lessons.
As you can see from our web site there are so many activities going on. We will personally participate in two walks, Woodbridge and Long Island, and hope to have a team organized by Dan in Indiana.
In May, my dear friends, Diana Hetzel and Elke Rugen are organizing a dinner-dance fundraiser for the ALS Hope foundation in my honor. It should be a fun event - I'm still speechless by it all.
In closing, I would like to thank everyone for their continued prayers and for their participation in my birthday prayer chain. My sister, Janet, amazes me with all that she can accomplish. As you can see, we are doing well. We are praying for a cure, not just for me but also for all ALS patients. Life is a gift - cherished each day.
Love and friendship, Marlene
March 2005:
Dear Friends and Family,
Well it has almost been one year since I was officially diagnosed with ALS. It took 7 months of intensive testing of ruling out other diseases before we got the news. With each negative test result, our biggest fear was coming true. Once we got the bad news out of the way, it was time to focus on the future.
The past year has been challenging both emotionally and physically. I still have not fully accepted my diagnosis though I am treating the symptoms. I have surrounded myself with wonderful caring doctors – interested in taking care of me on an emotional and physical level.
I can still do everything I did a year ago, just much slower. Moving into a ranch in December changed my life for the better. Having everything on one floor has made everything so much easier for me. Before moving in, we made the bathrooms handicap accessible, widened all the doors and put in a new kitchen. We are currently completing our addition, which enlarged the family room, added a bedroom, bathroom and laundry room. We are blessed to still have Anna help with Christian and the housework.
I am doing ok – some days better than others. I try not to think about my situation that often because then I just cry. See, I am still sad and scared. I am afraid for my son – if this disease should progress – what is going to happen to him? Christian is only 3 – I want to be there for him when he needs me and because of that I am never going to stop the fight. My hands and legs have gotten weaker. I now type using pencils and walk with a cane. I know I am sick but I do not dwell on it all day. I would drive myself crazy. The good news is that I am living today and enjoying life.
We as a family (extended family included) have participated in several ALS Walks raising money and awareness. If you are interested in walking this year, please look on www.ALSA.org web page for walks in your area. Our web page details what we will be participating in this year.
In closing, I would like to thank everyone for their caring words, prayers, kindness, and love. I have been blessed by such wonderful friends and family. There is not a day that goes by that I do not think about my many blessings and my angels. Thank you for lifting me up when I have needed it most. Your letters and prayers always arrive when I have needed them most. Please continue to keep me and my family in your prayers and prayer lists. God will keep us strong through this and maybe even send down a little miracle.
Much love,
Marlene (Spring 2005)
My favorite links
To email me
fraehmke@comcast.net