Saturday, June 4, 2011


I remember when Karl was first diagnosed with PPMS. Karl had just come home from having emergency surgery on his spinal cord, and was barely able to get up out of his hospital bed and walk. A friend commented that one of her co-workers had MS and was still working and that he should just push himself harder. Anyone who knows Karl knows that pushing himself to do better or work harder was NEVER an issue.

There are LOTS and LOTS of folks with MS, despite the fact that its still considered and "orphan" disease, everyone seems to know someone with MS. There are 4 types of MS, the most common being relapsing remitting which means you have flare-ups but you eventually recover and continue on with your life. However Primary Progressive means there are NO remissions. Once onset occurs, your disease continues on from there, never giving you a breather. Think of it in this way, remember that flu you had when you were so sick and so tired you could barely raise your head? What if every day of your life felt like that? And what if you were faced with the realization that no matter how much rest you got, tomorrow you wouldn't get any better? THAT is primary Progressive MS.

The other thing tickling my brain is that Medical Marijuana is still greatly misunderstood. Even people close to us don't understand what it does for him. Why can't he just take a pill to treat his pain? Think about lifting weights and how your muscles get tight and hard when you're lifting. Now imagine holding that weight all day. Your muscles fatigue and start to shake. Karl's muscles are in a state of constant flex. When you touch his legs they are hard as a rock and spasming. The cannabis relaxes those muscles, as well as helping with the neuropathic pain that sends shooting pains down his arms and legs. Anyone who thinks that its all fun and games is a moron. Imagine getting up every morning and having to have a beer with breakfast so you could make it to the bathroom the rest of the day. Day after day after day. Not too appetizing a thought is it?

I hope I've managed to enlighten a few folks about the realities of living with PPMS.


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  2. I'm currently having PPMS confirmed. Not only is it a situation of no treatment, and symptoms not subsiding, but so far, doctors are reluctant to even guess at prognosis. To me, that's more important than the progression and fact that I have it. Why? Imagine not knowing if it will progress to be debilitating within a year, two years, or 10. Do you get hand controls for your vehicle, or will it progress so fast that it's not worth it? How fast should you prepare for changes? Will you retire, or be on disability before that happens? Should you cash out retirement savings and enjoy life, or risk keeping it in place and a nursing home taking everything, claiming that's what it's going to cost to care for you?
    Waking up wondering what new symptoms, if any, you'll encounter during the day. Feeling better than usual and taking on challenges, but not knowing how long until your body will stop cooperating. Knowing, as I type, I have about 2 hours until I use one finger on each hand because they will stop cooperating at that point.
    Having to look at each item you want to pick up because you can't feel it or tell if you actually have it in your hand. The mental exhaustion is as bad as any physical symptom because EVERY task requires you to focus. Each step. Each movement. Knowing where your hand holds are in case you start to lose your balance. Do you hold onto something for safety, or not, challenging your body to function as normal as possible.
    There are so many levels, but the most important thing I've found is attitude is HUGE. It takes as much energy to smile as it does to feel sorry for yourself, but days are much better when you make the most of them and enjoy life on life's terms.