Thursday, February 23, 2012

The Grim Reality: It Won't Get Any Better

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.


Anthony said...

I wish you and your wife the best as she continues to try to cope with this disease. Some of my family members had MS, so I can sympathize.

Anthony said...

And it is likely that more members (including perhaps myself) will develop this disease when we get a little older.

Cranky said...

Anthony - greetings! Thanks for your good wishes. I hope you never do develop MS. It's a really sucky disease, to put it mildly.

Muffie said...

Cranky, your description really his home. I can still move around the house, albeit awkwardly, with a walker or the walls, but I need a w/c for other travels. My right hand has been shot for a while, and now I'm noticing the left one weakening. I did OT for a while, but I was exhausted.
Your definition of MS as sucky is right on the money!


Cranky said...

Muff - I know some folks with MS read this blog and I was conscious of how it might sound all too familiar to some. I'm glad you still have the ability to walk, even a bit. sorry to hear about your hands. Skip's hand weakening is scaring me.

Have Myelin? said...

I wish I had magic words that would make you feel better but I don't.

I am sorry - MS is a bitch. No question.

Cranky said...

Sherry - right back at ya! I wish I had magic words for you, too.

kmilyun said...

Hope the next round of adaptive devices help Skip.

As this sucko disease progresses finding new ways to adapt is one royal and frustration pain in the arse.

For both those of us with it and for those of you that love us.


P.S. the word verifications on blogger are getting harder and harder to figure out. Stupid blogger . ... maybe forth time will be the charmed one. Ok now the fifth . ..

Have Myelin? said...

Re: word verifications.... blogger changed the format. I had to turn mine off due to complaints. Then I changed the settings to moderate comments that were older than 7 days old.

So far, so good.

Makes me cranky, Cranky. LOL.

Cranky said...

Jan - what you said, most def.

Jan and Sherry - I think I'll turn off word verification since it sounds like it's become quite the pain in the ass. The only reason I turned it on was because I was getting some spam and the word verf'n stopped it.

Sherry - I use the moderation on older comments, too. It alerts me when someone decides to respond to an older post.

Patrick said...

Powerfully and poignantly told, Cranky! Thank you both for sharing.

Caregivingly Yours, Patrick

FYI for all the new two word captchas have nothing to do with word verification just spam filters verifying we are human - kind of reassuring. :)

Cranky said...

Patrick - thanks for the kudos.

SirFWALGMan said...

I have not read your blog much, seen your comments on Josies blog. Very well written. I will be reading some of the other posts. It is really awesome to see the love you have for each other. It comes through in your writing.

lightning36 said...

Hmmm ... Waffles is acting like a human being? Did someone hack into his account?

The word verifications have been messy lately. And I thought it was just me and my shitty eyesight.

Please continue to take good care of yourself. And share your burden whenever you can to keep your life moving in the right direction.

Cranky said...

Waffles - Greetings! Thanks! I've been checking out your blog lately as well. Sorry for your troubles, but it sounds like you're doing a great job of dealing with it.

Lightning - thanks for your good wishes.