In February Tom noticed he was having some issues with his jaw being tight and occasional slurred speech and coughing while eating or drinking. He attributed this to maybe a winter cold and sore muscles due to the weather. After these symptoms did not go away, he went to his primary doctor. Tom endured several months of doctor appointments, referrals to specialists; endless physical tests, labs and painful nerve tests; and finally a second opinion. On August 8th – Tom’s 54th birthday they received the life shattering diagnosis they were not prepared for - Amyotrophic Lateral Sclerosis also known as ALS or Lou Gehrig Disease. Specifically, he had Bulbar Onset ALS. Bulbar Onset ALS affects the speech, swallowing and breathing functions first before spreading to the limbs. As an overachiever, of COURSE Tom was diagnosed with the rare type of ALS that proves to be fatal in a shorter time span! Over time, this progressive disease causes the death of neurons that control voluntary muscles leading to paralysis of the entire body. There is no cure for this horrific disease and since his diagnosis, Tom has declined at a rapid pace.
Tom and Kelly have been jumping thru medical/insurance hoops trying to get treatments and medications approved while paying full costs out of pocket. Kelly has been working 2 jobs to pay for these added costs while they fight relentlessly with their insurance to cover specialists, tests and treatments. Unfortunately, time is not on Tom’s side. Most patients diagnosed with Bulbar onset ALS have a life span of approximately 18 months.
In September it was recommended Tom begin Radicava infusions. This is the only medication approved by the FDA known to slow the progression of ALS. Tom’s insurance denied the approval of this medication which costs approximately $13,000 a month. He has met every insurance requirement such as additional tests to verify if he qualifies for the infusions. Many of these additional tests, the insurance did not cover. An appeal was made to the insurance company which was also denied. They are not giving up and will continue to fight to get this medication approved by their insurance.
According to the Huff Post; ALS is a very expensive disease, costing patients an estimated $300,000 a year. The majority of patients bankrupt their families with the costs and an even larger number simply can’t afford the cost to stay alive, so they don’t. Can you imagine – having to stop BEING ALIVE because it’s too expensive?
Well – we are approaching that point with Tom.
Kelly and Tom have begun seeking alternative, herbal, and other treatments in conjunction with traditional treatments to help extend his useful life and slow the progression. They have seen some positive results however, these are all out of pocket costs that are mounting and not covered by insurance; not to mention the astronomical amounts of co-pays for doctors, specialists and medications. They are also seeking clinical trials and treatments out of state which requires travel and more time off work.
Tom and Kelly’s employers have been incredibly understanding and accommodating, but the additional expenses are proving to be more than they can afford. Tom will need specialized equipment and home modifications soon. All expenses no one ever prepares or saves for.
Tom does not have long term care insurance. Caregivers and specialized equipment are not covered by health insurance. Tom currently carries the family health insurance thru his employer and knows full well the time is approaching when he will no longer be able to work and provide for his family.
Before this diagnosis, Tom was a healthy guy who ate right, played hockey 2-4 times a week and enjoyed motorcycle rides with his wife and children. A true lover of music and an accomplished drummer; he has been in numerous bands over the years including Tattoo and No Mercy in his early days and has had the honor of performing and recording with Kevin M. Buck and Lyden Moon in recent years. The list of projects he has been involved with in the last 40+ years could go on forever! His current projects are Bad Medicine and Motley II and he has been with both for several years now. 2 years ago, Tom formed his dream project - Coopers Dead Things and hand-picked the musicians to perform in this amazing tribute to Alice Cooper. Tom was the front man and his son was his drummer. Unfortunately, as this disease has progressed Tom realized it was time for his final show just as the band was beginning to enjoy the successes of their hard work and, were filling venues to near capacity.
This disease is robbing Tom of all that he loves – he no longer can sing or talk, lift his grandson in the air or play hockey; and the time is coming soon to put the drum sticks away and his future motorcycle adventures are questionable. He loves his job as a machinist/fabricator/welder, but it is a job that requires physical agility and the ability to use his arms and hands. His arms, hands and legs are starting to show signs of weakness and the fine motor skills in his hands are diminishing each day. Simple tasks such as shaving and changing a tire are becoming more cumbersome and difficult. He will soon be wheelchair bound and need full time assistance. Tom coughs and aspirates on food and liquids more often than not lately and his physical strength and energy is declining quickly. He is trying his hardest to fight these ailments, but the realization is that Tom’s life is now limited with no cure at this time. To know that he will be leaving his family sooner than later is agonizing.
Tom does not want to be a financial or physical burden to Kelly and their kids. He’s always been the guy to take care of everyone else.
Through the years, Tom has volunteered and performed at countless fundraisers for his community, church, and at numerous benefits for families in need. Kelly has organized, run, and volunteered for more fundraisers than her family can count. She is the one you will find involved in just about any fundraiser her family, friends or acquaintances may need assistance with. Tom and Kelly have selflessly given their time and energy to help make life better for others. They are not ones to ask for help, nor will they – which is where their family and friends come in…..THEY NEED HELP.
Rather than surrendering to this ugly disease, Tom is facing it courageously and is prepared for the fight of his life. Since we all know Tom and Kelly would never ask for help, we are now reaching out on their behalf and asking all of you to help us help them in the ultimate fight for his life.
The GoFundMe has been started to help with some of the immediate medical costs and home modifications Tom will need in the coming months. A fundraiser is being planned for a future date. Please consider donating to help offset these costs so Tom doesn’t have to give up fighting for treatments that could ultimately extend his useful life.
An account for the family has also been established and donations can be sent to the following:
Checks made payable to:
BMO Harris Bank
101 Burr Ridge Parkway
Burr Ridge, IL 60527
Attn: Jason K.
Please reference acct. number ending in: 5432
We thank you in advance for your generosity. More importantly; we ask for your prayers as Tom and his family navigate through this sad and difficult journey.