Featured Family: The Noeskes

Thank you to Todd & Keri Noeske who were willing to share their story!


In February of 2003 my mother began having problems with balance and moving her legs. She could not walk down a wheelchair ramp. The doctors began doing tests. As they did more and more tests (too numerous to recount) they were painstakingly working their way toward a diagnosis. A diagnosis that can be made only by ruling out every other possible diagnosis. She was diagnosed with ALS in the spring of 2003 which was then confirmed after she spent a week at the Mayo Clinic undergoing the same tests and more in August of that year. Our family was introduced to a new world of possibilities for the future. Where we had spent the previous fall looking at 5th wheel campers and talking about retirement plans with my parents, now we were trying to figure out where to put a wheelchair ramp and how to get in and out of the brand new Ford F-150 they had just bought to pull that 5th wheel in a few years. Decisions for the future became a frequent topic of conversations. Decisions like never being placed on a ventilator or not performing CPR if a life threatening emergency happened. My wife and I also had to make some decisions, what kind of impact could we have on the lives of my parents over the next few years. My wife had just started nursing school, we had been married for a year and a half and my son was turning 5 years old, starting school himself. We chose to do whatever it took to be a part of their lives as often as possible and support them with any decisions that had to be made. We also made a very important decision that has shaped the rest of our lives as we learned the life expectancy for someone with ALS is 2-5 years, time for more children so they can have some time with their Nana. We did not have our other children because my mom was sick, we had them so she could be as much a part of their lives as possible. We hoped and prayed that time would be long and they would have memories of her but we also knew that it might be short.

We never found the magic wand that made the experience easier, it's not there. We struggled to respect the wishes of my mom and that was to remain at home. My dad continued to work full time. After a hospitalization for blood clots in the lungs that lasted from before Thanksgiving until the New Year, my mom was not the same. She could no longer pull herself to a standing position and walk to the bathroom. My dad would come home on breaks and at lunch to help her to the bathroom. We hired a caregiver for over a year to help alleviate that strain during the day. Where one strain was alleviated, another was born. A caregiver was a blessing, paying her was a curse. Of course we did not have handicapped accessible anything in the home, so remodeling a porch into a bathroom was the next step. Then when she could no longer sleep in her bed, a hospital bed was moved into the living room. My dad slept on a bed pushed right up to the side of that bed and they always made sure to share the covers. A ramp into the yard made going outside easy during those beautiful summer months. We were lucky to have assistance from the ALS Association who seemed to know so much more about ALS than we did...They gave us a mechanical lift, helped with appropriate wheelchairs and so much more support. We still needed to care for my mom at home though, that is where she wanted to stay.

Over the first year of Josh's life, my mom continued to live with the disease and we spent more time than I can remember on that route from Kalamazoo to Jenison, Josh probably could have driven it. As she continued to fight and my wife moved through her second year of nursing school, we decided that it was time for that third child. We wanted to give her that dark-haired granddaughter she had always wanted. We wanted her to be able to hold another grandbaby and have pictures of her with that one too if possible. We also wanted to be able to share her name with that child. She would not make it to that third grandchild's birth but at least she was able to laugh with us that God had it in for my wife and it would be another boy coming along. She named that angel before he was born and his memory of his Nana is that she named him and their initials are the same.

As the summer of 2005 approached, my mom was no longer able to talk with us, but it was amazing how she could still tell us exactly what she needed with her eyes or her lips. We would spend 30-40 minutes at night positioning her hands, her legs, her neck...everything. There were pillows specifically for her right arm and ones specifically for her left. There were blankets for behind her head and a hand towel for just a little extra height behind her neck. She went to bed after 9pm on Tuesdays but had to be in bed and comfortable by 8pm on Wednesdays because we could not miss American Idol. Our family has a special place in our hearts for Carrie Underwood from that year, we have never been able to watch it since then.

My mom passed away from ALS at home with my dad at her side on June 7th, 2005. My son had his first birthday 3 days earlier. Could we have done things better or different during that time? Maybe, but we had no idea what we were supposed to do, we just did what we could do. Do we wish everyday that my mom was still here to enjoy these wonderful children and be their Nana? Absolutely. As much as my wife and I have tried to figure out a way to change the past, we cannot. So, we accept our reality of having lost a very special and strong woman to a disease way too early in life. Now we hope to help others affected by ALS by promoting awareness of the disease and pushing for legislation to allow the extent of research necessary not only to cure this disease but to understand it. When people hear the name ALS, we want them to have hope for the future by being able to offer them a cure. Right now ALS can be pretty hopeless for people. I still cringe when I hear of more people affected because I know the suffering, fear and hopelessness. I also know that with a continued rise in awareness and a push for support that we can bring hope to so many, it has happened with other diseases thought impossible and it will happen with ALS.

We had been through a tremendous loss and even two and a half years to prepare for it is not enough. The most important part of surviving the loss of my mom to ALS is the strength of my family throughout. Family members have to remain together and strong, they need one another during that time. The burden of caring for someone with ALS is too great for any one person, allow family members and friends in to help. Family members and friends, never hesitate to insist on helping and taking away some of the responsibility of the care. My dad would never have stopped caring for my mom, but by insisting on being there the rest of the family was able to spend time with that very special woman as often as possible.