There's been a little too much positivity and sweetness and light on this blog of late. Time to get back to some down and dirty crankiness. I was originally writing this as a cranky reason, but really, this reality doesn't make me cranky, more feeling sad with tinges of fear, wondering what's coming next.
Most people who have MS have the relapsing-remitting kind, where symptoms can come and go. Others have progressive forms where what you lose to the ravages of the disease never comes back. That's the form Skip has. It's true she had some sight issues that recovered (thankfully), but other than that, once it was gone it stayed gone.
Flashback 28 years. It's 1984 and we're living in a wonderful apartment on the 4th floor, no elevator, with a cool roof deck in Boston's South End. At the time, it was Boston's gay mecca and we loved living there. I was going to computer programming school and Skip was the bar manager at a Japanese restaurant on the waterfront. She started having feelings of pins and needles on her thigh and lost some sensation in her fingers. She thought it was pinched nerves and went to a chiropractor for a few months. Not surprisingly, the treatment was ineffective. Fast forward to the present and Skip no longer walks, can't even move a toe. Basically, nothing below her armpits works anymore. And, her arms and hands are becoming increasingly weaker. Her left hand doesn't do much of anything anymore. She needs help for just about all tasks of daily living. Even feeding herself is becoming a challenge on many days.
Between then and now, there've been lots of little and large losses, where we've said goodbye and mourned each successive loss. And, most importantly, made accomodations to the new world order. Skip went from the funky sensations she first experienced on to weakness and foot dragging in her left leg. This brought on a cane. As the disease progressed, we went on to a walker (fun for a woman in her 30s), then a manual wheelchair when we were out and about to full-time wheelchair use in the house. And so on.
We have a fairly standard routine whenever a new device comes into the home. I greet it with gusto as I see it as a wonderful boon to Skip's life and it will make my life easier as well. Skip finds its arrival very depressing because it's only necessary due to some new MS symptom and loss of functioning. Eventually, though, she adapts to the new device and is glad for the assist.
Now, I'm thinking about assistive technology devices that we need to replace her hand functionality as it continues to degrade. She's having problems with the tv remote and the computer keyboard. We need to get in an Occupational Therapist to assess the situation and recommend some tools. In fact, there's an OT with the agency that provides visiting nursing and home health aide services. She's on vacation this week but will be contacting us next week so we can begin discussions. Soon to come, I suspect is another round of tools that Skip will be depressed about but eventually accept as she learns to use them and sees how much they help her life.
Re-posting of a blog post from last year
6 days ago