My husband Dan has MS. He was diagnosed in 2005. It hit him “hard and fast.” His older sister has also been diagnosed with MS. She was just diagnosed a year ago.
We ran out of funds to pay for Dan’s infusion. We had to get assistance to pay for it. It costs $6,000 a month for his infusions.
The National MS Society helped cover some expenses of a bathroom modification. We had the bathroom door widened and a grab bar installed. Dan’s chair couldn’t fit inside before the modification. Dan was falling every day.
I was an LPN for a living. I worked at a pediatric office that I loved for 26 years. When Dan couldn’t work anymore, I lost my insurance through his work and I couldn’t afford the insurance that my employer offered. I had to change jobs to get reasonable benefits.
We used to love dancing and belonged to a dance group. It was the disco years when we first met. Then disco went out of style and we joined a country western group. We aren’t able to dance anymore. We also used to eat out more and go to movies, but now it’s cumbersome with the mobility equipment that is necessary to get around and we just can’t afford it. Living with MS is too expensive.
As a caregiver…you need to let them know that you will take care of them and that you love them. I’m not going to leave him because he can’t dance. A life with MS is stressful and it can be downright scary.