Tuesday, February 17, 2009

How all this got started

Back in November, when I was struggling under the weight of all the life changes that we had experienced so rapidly, I came across a post by Merely Me on HealthCentral's Multiple Sclerosis site. In it, she described her first year with MS, and asked others to contribute theirs. So the day after Thanksgiving, as I was laying in bed trying to cope with BR's abscessed gum, I posted our MS story in a comment.

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.

I am reposting it now as I am once again struggling with all the responsibilities. The last time, I was lead via the Carnival of MS Bloggers to Herrad's and Richie's blogs. Reading their story makes me feel not so alone.

And so I blog.



I'm so glad that you did start the blog, otherwise I would never have 'met' you. And, I'm very much glad that you discovered Herrad and Richie who are two of my personal heros.

So much more needs to be learned and understood about the aggressive forms of PPMS. This is one way to help create some of that understanding.

Thank you.

herrad said...

Hello Steve,

Thanks for this post.

What a quick journey and what alot of adjustments.

Sending you lots of love and support.
Love to you both,


Anonymous said...

My love and prayers are with you both.D

Richie said...

Thanks for sharing- I guess you know our story was similar.
It has been hard to tell people Herrad has the version that doesn't have good periods. Some still ask.
Nothing makes our darlings well but we can make them feel a little better.
You two have made me feel better too.

mortonlake said...

hi,i have a double whammy.im a 24/7 carer for elderly mother,and i have ms.not too bad at the moment.but bad enough.you know?just found your blog via richie.take care,mort

herrad said...

Sending you lots of love.