Monday, August 20, 2018

Clinical Trial Completed

It's been awhile, I know, since I posted here.

Well, the "news" is only that my participation in the Study of Modified Stem Cells for Ischemic stroke survivors has ended.  I'm relieved because the 6-hour drive every few months was so tiring for both hubby and I.

However, there are a few participants yet to complete their one-year term in the study. I've been told to expect hearing results by January or February, 2019. That is when I will learn whether or not I received the stem cells; though my guess is that I did not, based on the fact that I've seen no improvement in my motor functions.

I've been told also, that, if I was not a recipient in this phase, then I may qualify to receive them for certain in the next phase.  Hubby is super excited about that; I'm not yet sure how I feel about it.

I still continue with my fatigue and some depression over my loss of independence, but otherwise, I feel fairly well.

I've no idea when (or if) I will post again but, if I do, it most likely won't be until next year.

Good-bye for now...thanks for stopping by.

Wednesday, March 21, 2018

Still The Same

It's been three months since I last posted...and, I'm still the improvements in my mobility/motor skills.

Had another visit the study's research team in CT, earlier this month.  Same testing as I've previously mentioned.

In general, I am still quite amazingly fatigued, which, if I had not mentioned previously, is worse since the surgery for the clinical trial, than the fatigue I had following the stroke.  I spend much time in bed, having no motivation for much else. :-(

One good thing, however, I have finally mastered the skill of putting on socks one-handed!  I don't have the wakefulness at the moment, to explain why this is a BIG deal for me, but it is really big.  :-)

I hope that all my readers, whoever you are, are doing well.

Friday, December 15, 2017

Maybe Some Improvement

Hi all,

Had another visit with the clinical trial's research team earlier this month where they interview me and have me perform a few tests; I assume, looking for signs of any changes in my motor abilities, be it improvement or worsening.

With one of the tests, I am asked to pick-up objects of different sizes and shapes and then place them in another location; first using my unaffected right hand and arm, then   I am to repeat it using my paralyzed/affected left hand and arm.   The test equipment looks very much and (most likely is the same) as the "Action Research Arm Test" (ARAT) kit seen at the home page of Arat Kits. This testresults in me feeling really sad because I cannot do any of it with my affected arm, so it feels like a test of futility when I try. 🙍  Since the CVA/stroke, I've been unable to voluntarily move my left arm, hand  and fingers.  Although, now, with great concentration and the strong tensing of the muscles of my upper body (torso,chest and shoulders), I am able to move my arm upward some (to about waist level) against my body. However this causes my clonicity to painfully  increase in the hand and arm.

Another test is to time me walking in a marked off section of their offices, I've never asked, but it looks to be about 20 to 25 feet in length.  Although my gait is still awkward and unnatural, this month's  test showed a slight improvement with the speed of my walk.  At the prior assessment in September, it took me 33 seconds; this month, only 29 seconds.  So, I guess I'll accept that as 'some' improvement 😌;  however, I don't feel any different and the positive hope that I experienced going into the study has waned and I periodically have moments of great disappointment in the current state of my body and the inability to do things that I use to do easily.

I don't wish to close this post on that not-so-positive note so.....hmmmm...... Hubby and I just passed our 28th year of being married!  I'm most proud of that, especially given that we've had quite a few hardships thrown our way over the years and its my second marriage (his first). 

Until next time...Merry Everything to you all!

Saturday, November 4, 2017

Nothing New - Just Checking In

I decided to make a post today, only to inform my readers that there is thus far, nothing new to report.

I'm still in a "mood" energy, nor ambitions...whenever I start something new, I tend to easily get overwhelmed and frustrated :-(  For instance, today, I thought I would post some photos here but,just the act of finding them on my computer and arranging in an organized way for posting (because I am a person who needs to do things "neatly"and in a "just-so" way) I got exasperated and gave up...decided instead to kick back, enjoy my cup of coffee and make this quick and short.

I've another assessment appointment, for the clinical trial, coming up early next month; I am staying hopeful that, even though I am not seeing progress, maybe they will.

That is all for today.

Thursday, October 12, 2017

Trying To Catch-up

So sorry for the long gap between posts!  I am fine, no worries there, it's just that every attempt that I made at composing, put me to sleep :-(, I sure hope it's not the same for my readers :-)

The chronic fatigue that I've both experienced and about which posted here, in the past, seems to have  come back on worse than before.

Trouble Following  This blog?

I've heard from a family member that they tried to sign-up for email follow-ups here but didn't received any notices of my posts; so I'm hoping to have solved that problem by manually adding his email address to my list of followers.  He also mentioned being unable to leave comments, although, I don't know for sure why that was, I suspect it may be that non-gmail accounts don't work, so I've allowed the feature to allow anonymous commenters.  Hopefully that will fix that issue too. 

9/12/17 in Chicago:

I am going to try to follow my earlier bullet list of notes to continue my story but my memory of the details is no longer clear, so no promises here.

Early Start:

Had lots to do this day so we awoke early (6AM- I think).  Although we gained an hour,crossing time zones the previous day; it felt more like we lost one or two.  We showered the previous evening to enable us to be more efficient, time-wise, this day. We needed to be at the hospital, a half hour’s drive away, by 10AM for a day of pee-op testing.  We also needed to checkout of the Marriott Courtyard as after my testing we  would need to check in at the Hyatt Regency Hotel, where we stayed for the remainder of our time in Chicago.  So after getting dressed, we packed most everything, then went to the lobby for breakfast at the cafe there;  I’ll tell you now, everywhere we went in Chicago, we met the nicest, most helpful people ever but this cafe  had the cheeriest staff of all; I don’t think that I could ever be that cheery so early in the day!  They were like extra rays of sunshine :D Some may have found them to be sickeningly sweet.

After breakfast, we returned to the room to brush my teeth (an absolute must for me, after every meal); finished packing, then headed out.

Incorrect Address:

Our itinerary for the week was jam-packed into one unorganized paragraph in an email, so I needed to scan it to find the address for our day’s schedule.  I accidentally gave, to hubby, for programming the car’s sat.nav. system, the address for the next day’s appointment which we realized after parking in the parking garage; however, once we got back into the car and reset the navigator, it told us we were at our designated site. Phew; as it turns out, the various buildings that comprise the University of Chicago Medical Center, although having separate addresses, are all connected, so we stayed parked where we were and ventured off to the maze of buildings.
Long day of Tests & details of trial & surgery - We entered the building most easily accessed, across the street from the parking garage, received directions to the correct place and were met by the trial coordinator for the Chicago site, she (Regan) was so sweet and adorable, I just had to tell her “you are really cute”; hubby, somewhat  awkwardly, I think, confirmed what I said and she thankfully responded and mentioned that she hears that often, so, needing to be my unique self,I asked if she has before heard it from a woman; apparently, I was the first. :-)

She then lead us to her office, where she went over the details of the clinical trial and explained the surgical procedure, which would be dependent upon the group into which group I am randomly placed (stem cell recipient or placebo), both would involve the placement of an apparatus screwed to my head, to allow the doctor exact alignment to the portion of my brain where lies the scar tissue from the stroke and prevent me from moving my head out of alignment (I imagine some of you are cringing now, I did when I heard it, but they don't use pointy screws,they are flat screws,used like anchoring clamps.  I have a photo of me in it but it's a rather unflattering photo so I'm not yet sure I will post it here..   Then I was told that if in one of the two stem cell recipient groups (the only difference between the two is the total number/count of cells that are to be implanted) it would entail what they call "bore-hole" surgery ( a hole is drilled into the scull for access to the brain and the stem cells are placed into the brain, at the site of the stroke's damage, using a very long and thin syringe needle; inserted a total of 3 angles and depositing cells at 5 locations on each angle. If in the placebo group, then they would only drill a tiny bit into the scull, not to the brain,and nothing is implanted.  It was about this point that I would be lightly sedated but awake for the entire procedure.  I must have appeared horrified by this news as, Regan then reminded me that I can drop out of the study at any time, if I wish.  I told her, "No,no, I've waited so long and have come his far, I'm all in!"  But there was whining....

Whine, good sleep with Propofol:

I was so looking forward to getting some restful and refreshing sleep, which, from experience, is a sedative that provides such a sleep.  Hey, maybe that's why I'm still extra tired, four weeks later...I was given Propofol but didn't receive enough to put me to sleep... maybe it has the opposite effect of feeling refreshed when not fully administered?  Need I mention that this is the medication on which Michael Jackson O.D.'d?

OK, SORRY, I'M DONE FOR TODAY - If you are one of my friends with whom I gather monthly, I may not be attending this weekend (not yet sure) but don't worry, my health is good right now, no signs of improvements yet but also no ill effects.


Tuesday, September 19, 2017

Travels Continued

This post begins where my post of  Wednesday, September 13, 2017, left off

Crossing the Threshold from the walkway into the plane was, for me, utterly terrifying!  I had to walk it as my wheelchair was not allowed on, Although Hubby assured me that the walkway and the plane were level to each other and flat, the sunlight reflecting on the metal of the plane, combined with my view through progressive lens glasses,  made it appear to me as if the plane's threshold was concave, plus there was a bit of a gap between the walkway and the plane where I could see the ground some ten or twenty feet below (of course, I'm afraid of heights too).  I was frozen in fear and couldn't to it, so hubby bear-hugged me from the plane and supported me  as I took the step.  I love my guy!  He always knows the way to fix things for me.

Car rental - I found their process interesting. From the airport (Chicago-Midway) we took a shuttle bus to the car rental company,each one is located at the same location with check-in counters similar to the airport for the different airlines; from there we are directed to take the elevator to a specific level, it turns out that we are in a parking garage, which holds the vehicles for each rental company, once on the floor to where we had been directed there is an attendant who greeted us,  checks our papers and directs us to a vehicle of our order type and says “how about this red one here?”  I got the impression that we could choose whatever one suited our taste.  There was no inspection, it’s a take as is and return at end of rental period with no inspection on return.  Hubby informs me that is because he bought the extra coverage called ‘dent & scratch’  The only problem with this is our vehicle wasn’t very clean inside ; otherwise, I like the convenience of it all.
Hotel- Our first night was at the Marriott Courtyard, in close proximity to the airport, but even with it being close we still ended up driving in circles before we found it.

    This is a Restaurant that we like near home, since there was one in the hotel lobby, we decided to have lunch there.  In comparison,  It’s mostly the same, although this one had no reference to the T.G.I. portion of the restaurant’s name and it had a bit of history printed in the front portion of it’s menu that was news to me… I had thought that it had originated in Boston ( I often went there for lunch in the late 1970’s & early 1980’s, with my very best friend, with whom I have, sadly, lost touch - the restaurant had hand written menus with hand drawn illustrations - written in those old style black and white composition Notebooks, which I found quite fun to look through) but it turns out I was wrong; the first one opened in New York in 1965.
Our Room
    Like most of our hotel stays since becoming a person requiring special needs, there was a slight hiccup  with our bathroom.  We were given a room with a roll-in shower as we requested (because I don’t have balance control to step over the wall of a tub), but there was no bath seat (often, the hotels have a fold-down bench) so, back to the front desk to fix the problem; it was fixed immediately; they delivered a bath chair to our room, much like the one  I use at home.
We were both so very tired from all the travel and anxiety, that we took a 2-hour nap. Hubby had left his hat and sunglasses at home and since without those protective items, while driving in the sun, usually gives him migraine headaches we thought we should seek out a store suitable to make those purchases.  We started by googling for nearby shopping malls and after driving to 2 of the locations and finding no such suitable store, I decided to google for a nearby Walmart and at the time of my search we were then only a very short distance off to Walmart.
    Those of you who know my hubby personally, may find this next part funny: we couldn’t find any fully-brimmed hats. Like the Tilly he usually wears so he had to settle for a ball-cap, what he referred to as a “goofy cap”; however it was a solid color (his favorite, black) without an emblem on it, which made it more to his liking.  He also found clip-on shades to his liking☺.  I know there are many people who are not fans of the Walmart company, but I've always found them useful in a pinch, like we were.

At this point, I wish I had the time and energy to continue my story but I am unable right now.
Hubby and I are driving to the research assessment site, in CT, tomorrow for my 1 week post-op follow-up and MRI.

So, I am unsure how I will continue with this blog but I will tell you now, that I will not write about the procedure here except this...I did not have general anesthesia, I was kept awake for the entire thing! However, if any of my family and friends, reading this, and having knowledge of my cell phone number, wish to hear more of the details, I will welcome your calls and answer any questions you ask.

Based on a number of factors, post-surgery headaches being one, I feel certain that I am one of the recipients of the stem-cells.

Don't know when I'll post again, but I promise I will at some point.

Saturday, September 16, 2017

I Survived

Just aa qoick & short post to assure all my loved ones that I made it through surgery fine and am now back home; I had not been able to post earlier for an assortment of reasons but hope to catch up over the next couple of days.I'm still recovering-healing but also feeling positive that this is going to rake some good changes to my current deficits.

My next post should pick up from where I finished my previous post, with the following bullet list of topics
  • Friday's
  • Room
  • Nap
  • Walmart
  • 9/12
  • Early start
  • Incorrect address
  • Long day of Tests & details of trial & surgery -
  • Whine, whine, no good sleep with propofol
  • Hotel swap
  • Battle of the navigators
  • Nap
  • Dinner