Keep Ben MOVING!

BEN THIMMES FAMILY FUND

For those of you who already know us, hello again!
For those of you who don’t, your friends or family most likely do. They are probably a big part of the Ben Thimmes Care Team, and they are reaching out to you on our behalf. Thank you, Care Team!

OUR STORY: On June 7, 2007, our lives took an unfortunate and devastating detour. At the age of 30, my husband, Ben, was diagnosed with Lou Gehrig’s disease, or ALS. If you are not familiar with this disease, it is life changing. It robs the otherwise healthy person of all voluntary muscle movements over time. For Ben, it wasn’t much time at all. My husband lost the ability to talk, walk, eat and move most muscles within the first year of diagnosis. It was a staggering blow, to say the least, to our new family, which then included our one-year old daughter, Sophie. Those diagnosed with the disease typically die within 2-5 years, mainly because they can no longer use their muscles to breathe or cough to clear secretions. There is no cure, nor is there medication which does much more than extend a patient’s life 2-3 months. ALS has horrible emotional and financial effects on the family, and ours was no exception.

WHAT IT’S REALLY LIKE LIVING WITH ALS:
When people ask me what it’s like caring for someone with this disease, I always try to put a positive spin on things. No one wants to hear what it’s REALLY like. I don’t know what it’s like to have ALS. Only Ben can tell you that. I only know as the wife of someone with ALS, it is heart-wrenching to watch the love of your life slowly lose all his abilities. Especially someone like Ben, who is so caring and loving to his family and friends, loves a good debate, loves going out and socializing, and is so good at everything he tries.

When Ben was first diagnosed, it was like walking through a minefield. We didn’t know what muscle group he would lose next. With every new loss, we grieved. It was like being diagnosed with a new disease every two months. When Ben lost his speech, it impacted everything. He had to give up his high school teaching job, which he enjoyed. He could no longer have conversations with people, especially with his family and young Sophie, who had just learned to speak. We moved to our hometown of Lancaster, Ohio where, luckily, both our families lived and were able to help us soon after diagnosis. The school where Ben taught, Fisher Catholic High School, was extremely helpful by offering the use of their showers when Ben could no longer step into a tub. Ben’s students pulled together and hosted some events and fundraisers for Ben and the ALS Association. Good friends donated their Christmas money and threw a surprise birthday/fundraiser for Ben. It was a time of great loss, but also a time where we saw so many blessings we couldn’t believe our eyes. At a time when we most needed support, it was there. Even the handicapped van we were frantically searching for in order to get him to his shower and doctor’s appointments magically appeared through our Lancaster connections. God showed us he was looking out for us, even when times seemed the darkest. We were very blessed to have another child, as we had always dreamed of having a big family. In January, 2009, Benjamin bounced into our lives. Sophie and Benjamin are our biggest blessings. They keep spirits light during otherwise very trying times. They connect with their daddy in a special way that requires no speech. It is amazing to watch the connection they have.

But the story doesn’t end here. The times are still trying. Finding qualified nurses is an ongoing struggle, as it takes a very special nurse to learn to care for Ben and learn to communicate with him using a special system. Most of the problems that arise with Ben’s positioning needs and medical issues are solved by painstakingly slow problem-solving done by Ben and I, rather than just phoning up a doctor for the answer. In all honesty, doctors have limited experience with ALS, and it often takes a lot of digging and researching for me to come up with possible solutions. That takes a lot of time. I also spend a lot of time each week figuring out the needs for everyone and making a schedule to make sure there are no gaps in care. Sometimes weariness overtakes us, and the normal day-to-day tasks of caring for a family, like laundry and cleaning, or just going to work become next to impossible. The struggles we have faced and are yet to face are too numerous to name. And yet we still get up each day and meet these struggles the best we can.

THE GOOD NEWS:
Thanks to the Ben Thimmes Care Team, which currently numbers about 16, we are beginning year 6 of a 2-5 year diagnosis! Because of these wonderful people who help feed us, clean our house and care for us, many of whom who have been with us since June 8, 2007, we can help Ben LIVE. In January 2011, Ben’s breathing became so compromised, that he needed to get a tracheotomy and go on a ventilator. This decision was not an easy one, but we felt confident with the support of others, we could keep Ben alive, care for him at home and keep him healthy enough to be a loving husband and father to our family.
Technology has also helped us greatly. Ben uses a Dynavox computer with eyegaze technology, allowing him to communicate basic needs. It also controls the TV, reads books, emails, and allows him internet access to play Scrabble and Fantasy Baseball, which keep his mind active, even when his body can’t be. He has a costly wheelchair that allows him to be comfortable and an electric adjustable Bed, which helps him sleep. Technology can be a great blessing, but when it breaks, it can be very costly to fix. I recently paid $1600 to fix the eyegaze part of his Dynavox.

WILL YOU HELP KEEP OUR STORY GOING?
ALS is an expensive disease. Ben requires many medications, expensive equipment, home modifications, vitamins and supplements. As a caregiver, I am only able to work three days a week to bring in money, due to the fact that Ben and my children need me at home the rest of the time to care for them.

WHAT WE NEED:
With each year that an ALS patient lives, the cost of care goes up. As of now, I am continuously tapping into savings each month to cover expenses, which is very bad, I know! We have relied heavily on previous fundraisers. Unfortunately, these have been invested into his care already. Currently I am paying on average $400 or more a month out of pocket for medical supplies/bills/medications.
Please consider donating what you can to help with these specific expenses:
The Ben Thimmes Van Fund:
The Ben Thimmes Van Fund was set up to pay for our handicapped accessible van. This van gets Ben to trache changes once a month, to any doctor’s appointments, the ER, and gets him out of the house to enjoy life with his family once in awhile. Up until now, the fund has helped make the monthly payments. It is now dry. Having two car payments is very draining. There is about $6,000 needed to pay off the van. The monthly payments are $270.

A Generator for the Ventilator and other Medical Equipment
Another top purchasing priority is a generator to run Ben’s ventilator. I’m sure many of you were affected by the week-long power outages to recently hit Ohio and the midwest. Imagine how a power outage would affect our family! Ben’s ventilator batteries run out after 12 hours. Luckily, my parents had power. If they hadn’t, we may have been in the hospital the entire time, with my children being passed around to different homes. We need to purchase a generator, so we can remain in our home during power outages like these. The type we have looked at is about $800, plus fuel, which would also run heat and air/conditioning in extreme temperatures, without which, Ben could easily become ill.

Please consider making a donation of $25, $50 or more, but whatever you can afford is more than appreciated. With your generosity, I hope to fill up the van fund for at least a year, and any donations above that amount will go towards the purchase of the generator or medical expenses.

Remember, what you are really funding is Ben’s life in his home, with his family. If we can’t afford this disease, he can end up in a nursing home, unable to watch his kids grow up each day. Or worse, the stress of being away from his family and people who care for him best could weaken his immune system, making him susceptible to any number of ailments that could eventually kill him.
Please do what you can. We have devoted our lives to caring for Ben.
Thank you for caring for us!
All our love,
Sarah , Ben, Sophie and Benjamin Thimmes

P.S. For ease of deposit, please make checks out to: SARAH THIMMES or BEN THIMMES, and write VAN FUND-7378 on the memo line.
Mail to:
Fairfield National Bank
Account: Ben Thimmes Van Fund
143 West Main Street
Lancaster, OH 43130

PS To see more family photos, go to Jennifer Conklin Photography link on the side and Click on The Thimmes Family! She took these pictures in June, 2012, and we love them!