MS Caregivers

Look In the Book

I came across an excellent resource for those of us who are caregivers for someone with progressive MS.  It's a book published by the National Multiple Sclerosis Society called, "Caring for Loved Ones with Advanced MS: A Guide for Families".

If you were gong to gather all of the topics that caregivers need to understand (starting with the oft-overlooked topic of taking care of the caregiver!) you would end up with a book just like this one.  It's an amazing and complete resource that will assist any caregiver in finding answers to their questions, as well as prompting them to consider questions they may not yet be thinking about.

Contact your local chapter of the MS Society to find out how to get a copy of this excellent resource.  It deserves a place on every caregiver's bookshelf.

Tap Into the Wisdom of the Crowd

I came across a very cool web site called  PatientsLikeMe.  This site creates online communities for people with chronic illnesses, including a pretty vibrant MS community, with over 4,000 people with MS participating online.  There are forums, there is even an opportunity to provide a profile so that you can see what kinds of symptoms and treatments others are currently dealing with.  What's most interesting is that you can update your online profile as your symptoms and/or treatments change.  The site provides a chronological view that indicates the status of your MS over time.  It's definitely worth checking out.  And they even have forums for caregivers, as well!

My Own "Caregiver Walk"

No, this isn't about the upcoming WALK MS...although if you haven't signed up to participate or made a donation, there's still time for you to step up and take care of that right now.

This is about a whole different kind of a walk that I've decided to undertake.  Most of us have heard that part of caregiving is remembering to take care of the caregiver.  And it's difficult to manage your caregiving duties while you are dealing with your own health issues.  But that's where we caregivers, as a group, seem to have a problem.  Because study after study support the observation that caregivers generally don't do a very good job of taking care of their own health issues.  And that includes me.

I'm overweight.  It's not a new situation, but it's a worsening situation.  And as I grow older (currently holding steady at 53) it becomes a situation too important to ignore.  Why am I gaining weight?  Well, there are 2 popular theories that may be at work here.  Theory #1 hypothesizes that because I typically face a reduced set of "options" in life due to my caregiving duties, when I do have options I make the most of them and overindulge.  Food is one of those areas of life where I can still exercise full control -- so I tend to choose more than I should.  Theory #2 is simple -- I don't make time to exercise.  Coupled with Theory #1, we have a popular formula for poor health now or in the future. 

I've decided to try to do something about all of this because proactiely solving my own potential health problems is a positive step for me and for Jeanne.  After all, I won't be much of a caregiver if I'm not around to provide care, right?  And so...I'm going to start walking.  I have few excuses -- we live in Southern California, so it's not as if there's a foot of snow outside my door.  Actually, we live right at the beach, with a park on the other side of the street.  Enough walking options?  I think so.

I've bought my pedometer, and I'm going to start pressing it into daily service as of today.  I'm also going to begin making smarter food choices.  Nothing incredibly drastic at first.  Just a few steps in a healthier direction.  You'll be along for the virtual ride here, as I report in on my progress.  And if anyone cares to add their own words of wisdom or encouragement, you're welcome to.  I can definitely use all the support that I can get!

If you are a caregiver and, like the majority of caregivers, you are overlooking your own health and exercise needs, feel free to join me in this effort.  It has a multitude of benefits, but perhaps the most important benefit is in just knowing that you're going to be there to continue providing care for that special person in your life.

Destiny Calls

Some of you who have been reading this blog since its inception may recall that back in September, I struggled with the decision of whether or not to take advantage of a free trip to Las Vegas.  Carving out vacation time is a major decision for caregivers.  And I've found that knowing the "right" answer is not always enough.  As things turned out, this particular decision was taken out of my hands.  I did make a reservation to go to Las Vegas, but Jeanne ended up back in the hospital, so I cancelled the trip.

Well, it seems as though there is something in the universe that wants me to make this decision and then follow through on it.  And so Destiny came calling today, in the form of yet another invitation for a free hotel stay in Las Vegas.  I can reserve 2 nights in May, 2 nights in June and 2 nights in July.  As things turn out, July won't work because of business-related "stuff" on my calendar.  Same with May.  That leaves us June.  And so I've decided once again to take advantage of the free hotel accomodations and make the trip to Las Vegas.  All that's left is for me to actually get there.  Then I can work on the details, like having a good time.

More to follow.

MS Awareness Week -- Join the Movement!

Today kicks off MS Awareness Week, although it seems like it's MS Awareness Week every week at our house.  And if you're reading this, chances are I don't really need to raise your awareness of MS.  But I can at least take this opportunity to invite you -- make that challenge you -- to take action!

It would be great if the scientists and doctors working so dilligently could be that much closer to finding a cure for MS just because people cared.  And it would be equally wonderful if organizations like the National MS Society could continue to roll out programs and services that can literally be life-saving to the MS community based purely on everyone's level of concern.

But the reality is that it takes money to fund research.  It takes money to provide programs.  And it takes contributions from people like you to keep all of this going!  So I'm choosing to celebrate MS Awareness Week by telling you that we need more than just your awareness...we need your participation!  I'll get the ball rolling by inviting you to support my team in the upcoming WALK MS.  Or you could choose to start your own team.  You could choose to volunteer through your local chapter of the National MS Society.  You could take a moment and write your congressional representative or your senator and ask that they not overlook funding for important MS research when considering their own health care agenda.  Or, if you're a caregiver like me, you can share some extra time with that special someone in your life with MS.

There you have it -- everything from donating your money to contacting our political leaders to giving of your time.  Pick one.  Pick them all.  Take that high level of awareness and then take action!

No News Is Good News

First, let me apologize for not posting more frequently over the past couple of weeks.  There are 2 phenomena occurring in my life that might explain the paltry number of posts. 

Phenomenon #1 -- I'm in the final stages of launching a new business, and there seems to be at least 1,000 things to get done every day as "the big day" grows nearer. 

Phenomenon #2 -- I've tried to make this blog a 'real-time' reflection of the wins, losses, trials & tribulations that occur in our lives.  The truth is that the past couple of weeks have been pretty much 'status quo' as far as Jeanne's condition and all of the MS-related variables that swirl around our lives seem to go. 

So there you have it...a case of 'no news is good news', but no news is still no news.  Unless you start thinking too much about it.

Yesterday, someone asked me what Jeanne does all day.  It's actually a difficult question for me because it forces me to re-focus on the extent of her disability.  I know that a lot of folks who are home with disabilities are able to "break down the walls' by getting online.  Unfortunately, it's not an option for Jeanne...she can't sit up, her tremor keeps her from successfully navigating with a mouse, her swallowing and speech issues keep her from using voice-recognition software to navigate, her vision problems preclude her from reading any online content...as I said, it's not a real option for her.  And that goes for email and instant messaging as well.

The same set of disabilities keep her from using a personal computer to write -- which used to be her profession and her passion.  And her cognitive decline makes even the act of dictating to someone else someething that lies beyond her abilities.

Jeanne's vision problems make it impossible for her to read.  And her cognitive decline makes following an audio book difficult but sometimes doable.  Needless to say, we have lots of audio books.  Jeanne watches television to pass the time.  But it's really listening to television, as her vision problems get in the way of her watching even a big-screen TV.  Thank God for DirecTV and it's hundreds of channels...there's usually something available at any hour that will help the time pass.  But I know that's all it is...Jeanne was never a real fan of television even when she was writing for it!

And yet in spite of the dismal picture I may have painted in the preceding paragraphs, Jeanne is almost never without a smile.  So how does Jeanne spend her day?  More bravely than I ever could.