I don’t know if anyone else experienced this, but after my diagnosis, I felt like half a person. I felt like everyone around me could see that I was “incomplete” because of the way I walked, slurred my speech or lost my ability to write my name. Bouncing back from this initial shock wasn’t easy.
Through my journey with MS, I’ve struggled to accept that I will not be able to do certain things all the time. Sometimes my friends want to go hiking on the weekend and my body just says “No!” There are days where I want to accomplish so many things and I have to face the reality that I’m celebrating the fact that I even got out of bed that day. This is reality.
I write this from my wife’s bedside in an acute respiratory rehabilitation unit in a South Florida hospital. We are beginning our 7th week of hospitalization. You may ask yourself, “What does the journey of this couple have to do with MS?” The answer is: everything.
The purpose of this blog is more than a source of therapy for a spouse caregiver and greater than the need to rant about the inequities of life. The sole purpose of this article is to shine a very bright light on the difference between MS-related fatigue that may accompany an exacerbation and the ever so subtle presence of coronary disease and how it may present itself in women...
My heart is in my stomach.
My mouth is dry and he’s standing there, almost bracing himself, scanning my face for a reaction.
But I am numb—not in the tingly MS way, but I’m briefly stunned, mentally and emotionally.
My husband has just revealed to me that a longtime friend of his, someone he trusted in moments of private human emotion, has likened me to a child and, further implied, a burden...
My wife, Becky, and I will celebrate 23 years of marriage this month. We will reminisce through memories of our steamy romance and the early years of our relationship. We will not celebrate that numbness in my right hand that has been there a long time, nor the tight feeling around my torso that started in the late 1990s, nor the fact that I stumbled a lot…
I saw the first doctor in the spring of 2000. Not quite two years later I was diagnosed with multiple sclerosis. I suspected that I had the progressive type, and that suspicion was confirmed. This is not relapsing-remitting MS. There is no treatment. I’m not getting better. In fact, I will get worse as time goes on. I told Becky to go have a life but she wouldn’t hear of it. I know she was hurting then and I know it hurts her to see me struggle now, but she is strong. When I got my first assistive device, the mobility was liberating but my confidence and self-image were really hurting. Her strength helped me through that first trip. She opened the doors and cleared the obstacles as she has done for me now for 14 years...
We recently sat down with Dr. Peggy Crawford to discuss relationships and intimacy. As a health psychologist, Dr. Crawford has worked with individuals and families with multiple sclerosis for the past 25 years. She was a member of the staff at the Mellen Center for Research and Treatment of MS at the Cleveland Clinic and then a faculty member in the Department of Neurology at the University of Cincinnati. Over the years, Dr. Crawford has been actively involved with the National MS Society as a presenter, consultant and committee member and with CAN DO MS as a member of the program staff.
In your experience working with people with MS, what do you see as the greatest challenges that couples face when it comes to MS and intimacy?...
For the last few years, I have been making Rice Krispies treats and giving them to others. Although I am a pretty good cook, I have been drawn to make these easy cereal and marshmallow treats with rice cereal or corn flakes, and molding them into seasonal shapes. (They are, after all, gluten free!)
For the Super Bowl, I make footballs. There will be flowers for Spring, Autumn pumpkins, candy corn shapes for Halloween, wreaths for Christmas, and right now, I am trying to design something that looks like a ground hog for our annual Ground Hog Day celebration. I have posted pictures of my creations on social media. My sister teases that my fixation with these sweet creations is an “addiction” and suggests I need an intervention because I “can’t stop anytime I want to.”...
My wife, Pam, was diagnosed with MS in her mid-30s, after bouts of double-vision and “clumsiness.” For the first year or two, I sort of pretended like it wasn’t that big of a deal. However, she fairly quickly became dependent on a wheelchair and eventually lost all function except some use of her right hand. Now she needs round-the-clock care. Our three boys are grown up and moved out—one recently diagnosed with MS—and Pam and I both really want her to keep living at home. So far she is able to do so with in-home care and me: her husband and family caregiver.
For the past 15 years, our days have gone like this: I get up at 6:00 a.m. and help Pam out of bed with the lift. I take care of her restroom needs, then wash her and get her into her wheelchair. Then the certified nurse assistant (CNA) arrives so I can leave for work. Pam’s CNA feeds her breakfast, lunch and dinner, and manages her other needs including positioning to avoid pressure sores. Pam can be in her wheelchair for four hours at a time, and then she must be on the alternating-air mattress on her hospital bed (in our living room). After I get home from work we watch TV and talk; I scratch her nose for her or smooth her hair until bedtime. It may sound repetitive or leaden, and sometimes it is tough. But people get used to things—we’ve been doing this for a long time. Pam and I wouldn’t have it any other way.
When we first started writing the “Unspeakable Bits” blog, I resolved not to candy-coat the difficult parts of living with multiple sclerosis. I’d always intended to open the conversation about end-of-life and MS. I decided to broach the subject now, in the wake of the recent passing of our fellow “MSketeer,” Annette Funicello.
Social media sites erupted with kind words and remembrances of the actress. Soon, however, confusion began to set in as Disney’s press release attributed her death to “complications from multiple sclerosis.” When a Canadian television video of her last days was broadcast as a remembrance, confusion became fear and concern.
Every mom wants to do the best she can to care for her kids and keep them safe from harm: We make sure our cars are equipped with proper safety equipment like anti-lock brakes and strap them lovingly into child seats and seatbelts to protect them in case of an accident. We make sure they are wearing a helmet when learning to ride a bike. At home, we hide the dangerous chemicals and put away the knives.But there are some things we can't prepare for, or protect our children from, such as devastating illnesses. Sometimes, our babies grow up safe and sound, and we still find ourselves taking care of them later in life. In that case, we want to ensure they are comfortable and looked after, and do our best to keep life as normal as possible when it might feel out of our control.