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Secondary-Progressive Multiple Sclerosis
Around 2000, we believe Cir went from RRMS to SPMS, or secondary-progressive multiple sclerosis. In this form, the disease gradually gets worse. In between, there may be remissions or plateaus where the disease stays the same for long periods of time.
When it started
Secondary-progressive multiple sclerosis came on very gradually. It eventually became a turning point in Cir's life and ultimately our family life. Walking became more difficult. His right leg and right side became weaker.
Cir went from working full-time to part-time. He used a cane, but frequent episodes of fatigue made it impossible to continue working even part-time. He had a sales job where he was on his feet 90% of the time. Sitting wasn't an option.
He had to walk long distances. Falling also became an issue because of the hard fixtures around the department. Walking up and down stairs was near impossible. And getting to the elevator and then to the lunch room was a big problem because of the distance.
Incontinence was another issue. He made frequent trips to the bathroom. No one said anything, but for him it was an inconvenience and at times an embarrassment. He finally had to resort to wearing what he called "adult diapers".
(Note: He doesn't use them now, but he does self-cathe; which is short for intermittent self-catheterization. Given the choice, he would do self-cathing in a minute.)
This journey down secondary-progressive multiple sclerosis was proving to be a big headache. I'm sure Cir would have described it a lot differently, because he was actually experiencing it.
The "BIG" decision
He finally made the decision to stop working. We spent long hours talking about how we would make this work.
- How would we live?
- How could we make money if we needed to?
- How would we pay for insurance?
- What about the future?
We had so many questions and hardly any answers. We didn't even know where to start. That's when we found the National MS Society - NMSS. The office was right around the corner from our house at the time. We walked into the office one day and Cir became a member.
Among other things they helped us realize the many resources that are available to MSers. We started down the long road of applying for social security disability insurance.
At a stand still
We believe he has stayed on the secondary-progressive multiple sclerosis course till until now. His disability was getting increasingly worse. But because of some alternative treatments he's been using, he feels that the progression has actually slowed.
Right now, it seems as though he hasn't really progressed at all. Or at least the progression is so gradual that we can barely tell if there is any worsening. Some say that after awhile you get to a point where the disease just stops or freezes.
The ideal patient
According to his doctor at the Oak Clinic, Cir is the ideal MS patient. Dr. Carrabine feels that if all of his patients were like Cir, he wouldn't have a job.
Cir's most recent MRI showed no new plaques or scars. He hasn't had a major exacerbation in years. He's had pseudo-exacerbations or worsening symptoms that didn't last more than a few days. But "knock on wood", as Dr. Carrabine would say, nothing major.
Still no progression
Cir even had back surgery recently. Major surgery is not something people with MS go into lightly. Any type of surgery is a risk which may cause an exacerbation or even worse; permanent disability.
We talked about it for years before he finally decided to go ahead with the surgery. Fortunately it did help the back problem. And so far, he hasn't had any flare-ups of any symptoms. He has, in fact, felt much better.
We're really grateful that even with secondary-progressive multiple sclerosis he seems to be pretty stable. We still take each day as it comes, but we're thankful more and more for the good ones.
About 10% of people who are diagnosed with MS begin with primary-progressive MS or ppms. We are so grateful that this was not the case for Cir. With this type of multiple sclerosis the person gets progressively worse. Click here for more information about ppms.
Go from Secondary-Progressive Multiple Sclerosis back to Types of MS
Go from Secondary-Progressive Multiple Sclerosis to find out more of What MS is.
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Sincerely,
Cir & Akrista
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