Home Modifications: From Falls to Freedom

After my multiple sclerosis diagnosis in 1997, I knew that I would be faced with obstacles in my life, but didn't know when they would occur or what they would be. I was a school teacher and coach, a former college athlete and father of two daughters. In my mind…I was still invincible.

In 1999 my son was born, and like most fathers I still remember dreaming of the day I would get to run alongside him, teaching him how to ride his bike. Four years later that day came. I placed my hand on his back and together we took off down the street ready for his first ride…or so I thought. My legs simply would not move. My son fell over on his bike and my strong legs could not run to help him. That was the moment I realized that MS was going to affect me more than I had anticipated. It had slowed me down and tainted a moment I had looked forward to for years.

My son is now 15 and he doesn’t know a dad that doesn’t have MS. Both he and his sisters, along with my wife, have grown into strong MS advocates attending State Action Day in Kansas as well as Walk MS events for almost two decades. Having the support of your family at home is important, but so is physically having a home that can support your family – a home that can help you live your best life despite the diagnosis.

For years we lived in a California style spilt-level ranch house that had four flights of stairs. We loved this home, but it was not a safe space for me to navigate. The doorways were not large enough for my chair, the stairs were difficult to climb and falls were frequent and dangerous. I was limited to life on the first floor of our home.

Last year we bid adieu to our family home and prepared to make memories in a new space. Upon arriving, I found out that my family and church had pitched in to build a small ramp at the entrance of our home so that I could cross the threshold in my chair with ease. In addition, we installed hand rails on my shower, replaced the tub with a walk-in shower, installed a larger stool and widened the door to the master bathroom so that my chair could fit through the door. I didn’t think we would fall in love with a house like we loved our last home, but we did! For the first time in several years, I could finally move around to every corner of our home without relying on assistance.

Knowing my story, the National MS Society reached out to me about moving forward with a home modification tax credit bill known as the Kansas Disabled Access Tax Credit. Last year, I was asked to speak and tell my story at Kansas MS Action Day. Not only did I get to speak in front of fellow MS activists, but I was invited to speak in front of the Senate State Tax committee. As I spoke, I looked around the room and was overwhelmed by the concern and "want to help" expressions on the faces of committee members.

The president of the committee took the floor and said, “We don’t usually do this, but I want to move this bill forward and vote right now to move this out of committee.” The group voted unanimously.

Sadly, the bill did not move to the House before the session had ended that year. During the interim time I made it my mission to get to know state representative JR Claeys, who represented my previous home's district of Salina, KS. As the new legislative session began, he and his colleagues made sure to get the bill moving and made it retroactive so that people who made modifications in 2013 could benefit as well. It was passed in 2014 through both houses and signed into law by Governor Brownback. It was exhilarating!

It’s common knowledge that home modifications serve people living with disabilities – but they also serve their families. Being able to make these modifications has given my family the comfort of knowing that I am safe. They know that together we can live in this house longer together – as a family. Modifying our home has allowed me to take the initiative to assist myself. My family no longer needs to worry about leaving me alone at home, because the vast majority of our home is accessible.

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Brent

Brent Kirkhart

Brent Kirkhart was diagnosed with multiple sclerosis in 1997 and serves the National MS Society as a member of the Government Relations Committee for the Mid America Chapter. Prior to his diagnosis, Brent worked as a school teacher, and football and basketball coach. Brent lives in Salina, KS with his wife and son and has two grown daughters.

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    21 Comments

  • GiGi   Mar 30, 2015 10:16 AM
    Your post was very touching. Life sometimes throws us curves but as it is not the end. Keep a positive attitude well dealing with this life change. Your family loves you. Is there a Chapter in Philadelphia?
  • Carol   Mar 30, 2015 10:17 AM
    What a powerful story. God Bless You
  • Jan   Mar 30, 2015 10:25 AM
    My husband was diagnosed finally at 65. He was a avid runner in his 30's and we got to do a lot of the things we enjoyed in our younger years. Now it is a difficulty to walk out to get the trash cans in! I think I would have liked to know sooner when something could be done to help him as he sure doesn't have very much to look forward to!
  • Anita   Mar 30, 2015 11:02 AM
    I was diagnosed in 2004.....10 years I could hide the problems but not any more.....my father passed away 2 years ago I wrote many poems but in Dutch, because I am from the Netherlands

    Thank you so much 4 your words
  • christine staffieri   Mar 30, 2015 11:38 AM
    i am currenyly in an apt. bldg,left my home because of divorce, the apt. building is not in any way handicapped friendly, how do they get away with this? im in a wheelchair, courtesy of ms and if a smoke alarm sounds i sill be a crispy critter im on the 6th fl !!! the front of my bldg has 4 steps before you can even get in do i move or fight
  • Maggie   Mar 30, 2015 12:27 PM
    Great story, Brent! It would be great to have tax credits. My husband has been living with relapsing/remitting MS since he was 17. He is now 55. Unfortunately, we live in a 2 story townhouse and do not have the financial option to find something with better access. Nor do we have the funds to change things. He has been living downstairs sleeping in a recliner for the last 1 1/2 years. What I would give for a single story home!
  • Riun   Mar 30, 2015 2:28 PM
    Great story Brent. Wonderful that your family is aware and participating. Working through these issues at home and in community is beneficial to all that choose to be involved. As your story points out there is a strong desire to help out. This coupled with gratitude points an important way to step froward in the time we share. Double hinges and all!
  • Alissa   Mar 30, 2015 2:51 PM
    What a wonderful story. I am so happy for you. I too was diagnosed in 1997. Since then things slowly got worse-- it was ok-- my life was perfect. (so I thought). I married the love of my life. Had a beautiful son lived in a dream house. All was great. 20 years passed-- we did have obstacles-- we worked together and made it through. Until this past year-- my life fell apart. My husband cheated and abandon me and our son -- he stopped paying our mortgage and his response to me was,--- people change!!! My house is in foreclosure now. My only money sorce is SSI- disibility. I'll be homeless soon I'm sure. It's a mess. My life was sucked away from me and I need help. Thanks for listening and god bless you.
  • Mary Morton   Mar 30, 2015 8:23 PM
    Never in my life I thought I would end up with a disease like MS. But to have houses that would let people have houses that would be disabled friendly where they can get around smoothly because MS will take away your independence, dignity and spirit. I was dx in 2008.
  • Susan Seymour   Mar 30, 2015 9:56 PM
    Our married daughter with three young children was diagnosed at 37, last Christmas. Thank you for your inspiring story. I gives our family hope.
  • Katrina Hallam   Mar 31, 2015 12:11 AM
    I was diagnosed just after the birth of my daughter in 1986.
    Still kicking!!
    Try Dr. Hans Neiper's formula Calcium 2-eap. Available from Swanson's health products.
  • roz kaplan   Mar 31, 2015 6:36 AM
    I too have MS. I too would love to modify my home or move. It`s not so easy to find a place that can accommodate me. I live in Queens, NY. I wish you and your family all the best. Stay strong!
  • barney mayse   Mar 31, 2015 8:02 AM
    Great story Brent. You are a genuine hero.
  • Gerri Evans   Mar 31, 2015 10:16 AM
    help!! My son has MS dx last year h and his wife and son moved in with me were trying some modifications I rent the house been living here 10 yrs trying to get him on disability His wife earns $100 dollars over limit for SS assistance food stamps etc... We are struggling financially and emotionally He keeps falling very depresses
  • NancyOldham   Mar 31, 2015 2:30 PM
    My daughter was diagnosed with MS 6 1/2 years ago. Her son was born with spina bifida. When she and her husband built their house, they totally made it wheel chair accessible. Are they entitled to any tax credits because of this?
  • Leanne Brackett   Mar 31, 2015 4:05 PM
    I think it would be great to be able to get a tax credit. I have been living with MS since I was 23. At first I did great but now I find myself stumbling over the smallest things. The people who lived in our house before us repaired pianos and would drag them across the floor which stretched the carpet out. So you can only imagine how bad I need to replace the carpet or put tile down. And redo the bathroom so it is easier for me to navigate.
  • Thank you for sharing your story with us; it's greatly appreciated.   Apr 10, 2015 10:34 AM
    My daughter is the one suffering with MS; like you we just move to a new home and are trying to get the house safe for her. I did not know about the Tax Credit for home modification. My daughter is falling all over the house and due to a lack of funds the house is not updated to suit her needs. One day at a time; we are taking the necessary steps to make it safe for her. We need to build a ramp at the entrance of our home so that she could get in with ease. We already installed hand rails on her shower. We still need to replace the tub with a walk-in shower, and widened the doors to her bedroom and bathroom so that her "Rollator" could fit through. We are also in need of a Bruno Lift so she can get up the stairs to her bedroom. We need to make so many changes to the house just so she will be a comfortable. One day at a time with God's help we will get them all done.

    Sincerely,
    Maggie
  • Dawn Adragna   Apr 10, 2015 1:04 PM
    YOUR STORY IS SIMILAR TO MINE. I WAS DIAGNOSED IN 1999. I AM CONFINED TO MY FIRST FLOOR IN A HOSPITAL BED IN MY LIVING ROOM.
    I WOULD LOVE TO BE ABLE TO USE MY WHEEL CHAIR IN MY HOME. DOORWAYS ARE NOT WIFE ENOUGH.
    I FEEL LIKE A PRISONER IN THIS BED.
    IM VERY HAPPY THAT EVERYTHING WORKED OUT FOR YOU...😀
  • Terri   Apr 10, 2015 2:37 PM
    I have also re-modeled my home for MS and aging in place. I was able to use state and federal tax credits. I know in the greater Kansas City area, Christmas in October building events help some in doing minor modifications to your home. Contact your local MS chapter to see if they can help you with the application process or if they know of other sources to help defray your costs. Many adaptations are minimal in total costs....ie. Taking doors off hinges can give you precious inches, plug in lights to safely get around at night, take off shower doors to easily access bath benches, grab bars, and hand held shower heads. On the web you can look up recommendations for AGING IN PLACE....all help people who have MS. They give suggestions on documenting your modifications for tax purposes. Also UMB BANK has a bank specialist who can help you get low interest loans for re-modeling(if you qualify to pay back the loan). We can live successfully in our homes with the right modifications. A PT or OT are wonderful resources for adaptations. Take care and keep on moving!!!
  • Donn Hockman   Apr 13, 2015 7:05 AM
    Thanks Brent for sharing your story with us. As one challenged by MS since 1998, I sincerely appreciate your tenacity in seeing this bill through. All of us living with MS in some capacity can benefit from what you have accomplished. Continued good luck to you and to tour wonderful, supportive family.

    Donn
  • Darlene   Apr 14, 2015 7:12 AM
    Thanks for sharing it really touched home for me. I was diagnosed in 1990 I've tried very hard to be independent unfortunately it's been a struggle, the last couple of yrs., I'm not one to ask for help, as my family will tell you. we need to make our home handicap friendly unfortunately we do note have the finances to make that happen, any advice would be appreciated.