Tuesday, April 20, 2010

Prayers for BobRobert and Steve

BobRobert and Steve

Steve began his blog near the beginning of 2009 and I have been following his journey as partner, spouse, and caregiver to BobRobert. BobRobert was diagnosed only 3 short years ago and for almost half of the time since then, Steve has been sharing stories of their life and his experiences with the MS community.

Here is his original telling of their MS story (posted in November 2008 as a comment on HealthCentral) and again on his blog in February 2009.
First Year with PPMS
Friday, November 28, 2008 at 05:52 PM

My partner was diagnosed with MS in April 2007 at the age of 46. He had been experiencing tingling in the hands, bladder control issues, and short periods (1-2 hours) where his legs would just give out without notice. Within months, it became clear he had one of the most aggressive forms of MS anyone had ever seen.

He started using a cane in July. A walker in September. In October, as we boarded a flight to start a 2 week vacation celebrating our 15th anniversary, he took his last steps. And as he lost the use of his legs, they took on a life of their own, constantly jumping with painful spasms. His November MRIs were a complete bust due to all of the movement. By April 2008, the spasms had left his legs and started in his arms.

In those early days, I remember the bladder control issues as being a really difficult challenge. We didn't discover condom catheters until after that 2 week vacation, and instead relied on a hand-held urinal for emergency situations. We learned to always scan an unfamiliar location for either a wheelchair accessible rest room, or a secluded corner where he could use the urinal.

October also brought the first complaints of occasional abdominal pain. We initially mistook the pain for neuropathy. Big mistake. Two days before Thanksgiving, the pain had become unbearable and a fever started to spike. I wheeled him down to the emergency room, where they drained 2 liters of urine from his bladder. Who would have thought that a bladder that leaked so frequently could at the same time be holding on to so much? They kept him overnight to treat an acute bladder infection, and then for another 2 weeks of rehab so that he could learn how to use an intermittent catheter and gain some upper body strength.

When he came home from the hospital in December, the weakness in his legs had spread to his trunk, requiring the addition of a hospital bed, hoyer lift, and commode to our apartment. We didn't have an accessible shower or tub, so bed baths became the routine. But the intermittent catheterization was not keeping his bladder under control, so in January he had suprapubic cystotomy surgery. That was probably the happiest day he had had since they drained the 2 liters.

Then there was the neuropathy that started in July. His feet were either burning or freezing, with periods of feeling like he was walking on glass. By the time he became wheelchair bound, the pain had spread to his legs and rear. [Conventional and alternative neuropathy treatments provided limited relief.]

February through April 2008 brought a plateau to the symptoms. Things weren't getting better, but at least they weren't getting worse.

One of the biggest frustrations with PPMS has been the lack of any recommendable course of treatment. With RRMS, you have your interferons and Copaxone, which reduce the frequency and severity of attacks. But none of these have proven to help him with his one big, neverending attack.

I almost wish this wasn't classified as MS. Everyone seems to know somebody who has MS, but we've yet to find anybody with MS who can commiserate with what we've been going through. The closest we've found was a social worker we met in January who had worked with a client with the same type of symptom progression. She was reluctant to give any details, but we were starving for any kind of insight into what the future may hold, so we insisted. She told us that the client's decline went on for 2 years before he passed away from respiratory failure. That information oddly gave us some comfort.
Steve and BobRobert were married in October 1992 and have been together for almost 20 years. Unfortunately for the last 3 of those years, MS has aggressively asserted itself into their lives.

With the recommendation of his neurologist, BobRobert has been under hospice care since January. But it is just this week that the decision was made to keep BobRobert comfortable and to allow his body to rest.

BobRobert was transferred to Christopher House and he and Steve are surrounded by family and friends. I hope that this brings comfort to them both as BobRobert is dying.

Please keep them both in your thoughts and prayers, and perhaps stop by Steve's blog to leave a kind word. Although we have never met, my heart goes out to them right now.

Big hugs to you both!!


  1. Thanks for this post Lisa.What a sad and beautiful story.Mary

  2. This comment has been removed by the author.

  3. [Let's try that again...]

    Lisa - It was through you that we became connected to the MS blogging community, and I can't thank you enough.

  4. Lisa, I am glad you posted this (and many thanks to Steve) because PPMS is rarely talked about. The bladder is a killer and in all MS stages it is so important to be very aware of its health.