Share. Connect. Love.

Posted 2020-03-21T20:35:53Z

Eerie Times

Sorry it has been so long since we've posted.  The last three months have been hectic for both of us but now with the covid virus we are being forced to slow down and change our routines.  We are trying to look at that as a good thing.  There is a lot of news to catch up on, but I have to provide some sad news - the PostHope platform will be shutting down in June.  That gives us two more months to communicate with you this way before we need to find another route to provide you with updates.  If you have suggestions (please something other than Facebook) send us a comment to let us know.[...]

Posted 2019-12-07T13:10:42Z

The Gym

Suzy and I had a very exciting week - we got a head start on the NewYears resolution crowd and we went to the gym!  This something we used to do regularly but it was the first time we’ve gone since her stroke. She has wanted to go for a while, but I dragged my feet as I was nervous as to how it would go. I know Suzy and I knew she would have no fear and want to try everything. I was concerned that she might get hurt or discouraged.  I couldn’t have been more wrong.  She did great and it clearly was working to help her engage muscles she is learning to use again. [...]

Posted 2019-11-30T20:08:00Z

Open Season

We are currently in Open Season for health insurance with the DC government. In the next couple of weeks Suzy and I need to make a decision about what insurance to have for us for the upcoming year and it is difficult to know what to do.  Do we stick with what we know?  Suzy currently has the Kaiser HMO plan.  Or do we go with a PPO where we may be able to try more unconventional treatments for Suzy that are not covered by the HMO.[...]

Posted 2019-11-30T20:02:29Z

Bioness

We are soon going to get a new device for Suzy.  It is made by a company called Bioness.  It is cuff that fits around the leg just below the knee.  It has electrodes that stimulate the calf muscle to fire lifting her foot when she takes a step.  It is exciting for a lot of reasons.  First, we only recently understood that the device she currently has will cause her calf muscle to atrophy if she wears it all the time.  We are not interested in that.  Second, the device she has now fits in her shoe around her foot and it means that she has to wear oversized running shoes all the time - not exactly fashionable!  [...]

Posted 2019-11-30T19:49:32Z

A Year and a Day

One year and one day ago Suzy suffered her stroke.  It is very difficult for me to think back to that time.  It is easy to remember how frightened I was not knowing if Suzy would live or what her condition would be.  It is still so vivid seeing Suzy helpless in the ICU with tons of tubes and cords attached to her.  I don't know if it is avoidance, but I try not to go there.  [...]

Posted 2019-09-20T15:37:48Z

Vacation

Suzy and I are taking our first planned vacation post-stroke.  We aren't going far - just north of Philadelphia to Bucks County.  Currently we have no plans at all for the trip.  The place we are staying as a hot tub, a pool, and an outdoor fireplace.  We may never leave it!  We are really looking forward to getting away and recharging our batteries.  This past nine months has been a struggle and we are tired.  We are determined though.  Hopefully the next few days will give us a respite and we will come back ready to go for another nine months![...]

Posted 2019-09-20T15:29:20Z

Two Things

I think for both Suzy and me, there are two difficult aspects of her recovery: not knowing and guilt.

The not knowing is not knowing what the endpoint of Suzy's recovery will be (if there is one).  It is hard to know if she will return to work.  If she will run.  If she will bike.  Knowing this would help us accept, accommodate, and plan.  The reality is that Suzy continues to show improvement weekly - sometimes in subtle ways and sometimes in astounding ways. [...]

Posted 2019-09-20T13:28:28Z

Another Surgery

Once again I am waiting as Suzy has a surgery.  Luckily, this is a very minor procedure to remove a "loop recorder" - essentially a passive heart monitor that was watching for any abnormal heart rhythms.  This device was installed when Suzy was in the hospital in December 2018 because doctors couldn't find a reason for Suzy's stroke.  One thought was that she may have had an arrhythmia which can create blood clots.[...]

Posted 2019-08-26T18:52:45Z

Mind Pop

If you aren't getting enough about what Suzy is going through from this journal (and given my posting rate, you aren't), you might check out this site:  https://mindpop.net/.  This journal is written by a young woman who also had a stroke.  What is clear to me from reading it is that no two strokes are alike, but there are a lot of similarities.  For example the blog writer started posting soon after her stroke.  There is no way Suzy could have done that.  Suzy could now write a post, but it would be a lot for her and would take some time.  As she gets better, we'll post together. [...]

Posted 2019-08-26T18:35:38Z

Saeboflex

Suzy has a new toy - well... workout tool.  It is called a Saeboflex.  (Google it and watch a youtube video of people using it.) It is a glove that helps Suzy strengthen her hand and open her hand.  It is simple yet technical at the same time.  [...]