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!

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"...no 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.

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, whine...no 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.

 

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.

Friday's

    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.

Nap

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 away...so off to Walmart.

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.

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

Notes Thus Far

Going to surgery soon... but wanted to post a bit of stuff ahead of time.

9/11 - travel

Boarding

People needing assistance go first.  I stay in wheelchair to the plane doorway entrance and then, because I am able, I walk from my chair, through the door to my seat (of my choice, as Southwest airlines no longer does assigned seating - and no more separate classes), my cane gets stowed in an overhead storage bin by the flight assistant, then, boarding continues for other passengers.  I was surprised at how tightly my body fit in the seat, I know that I am overweight, but I never imagined that I was so much over that my hips were a bit pinched getting in.

Security checkpoint

  Really very easy process, just time consuming.  A call to tsa the day before, provided a lot of useful info and a number to call upon arrival to request a “personal ---  assistant”.  I was then met by Roger who helped with getting my wheelchair scanned and tagged for the flight and sset me up with a couple of female tsa officers to pat me down in private.

    medications, my wheelchair and I go through 2 scans, xray and 1 extra (laser).

Crossing the threshhold - next post.

Bathroom

    Yep, as I expected, the toilet room on the plane was, uh, awkward.  The total floorspace couldn’t have been more than 2 square feet and not square at all: I was only just barely able to turn around to close and lock the door.  then after doing that, the thought of turning again to check the state of the toilet was too daunting so, I just sat down without looking only to learn that the seat had been left upright (not so comfy) - (my hubby has me spoiled, our house rule is always put the seat down before leaving the bathroom).  Next, hand washing… because of the tight space, the good news is that I didn’t have to go far to do so and everything was reachable ☺; however it took me a rather long time to find the paper towels!  Everything being the same color as the paper towels (walls, etc) made it difficult to notice the hole in the wall that held the paper towels.

Bye for now.

Surgery Confirmed

So far, so good...Flights,car rental, and hotel accommodations have been confirmed, yea!  So, depending on weather (it's stormy in the northeast right now), I should be on my way to Chicago on Monday, next week.  I've never been there before but I doubt I'll have time to explore (maybe, a half day, at best).  Hubby wants to be sure to have a good steak dinner while there and I'm good with that.

I'm starting to look forward to it.  :-)

I had promised some friends that I'd get photos of me with the head piece they attach to the head prior to surgery (halo? cage?) but it doesn't look like that can happen as it's all done in the OR and hubby cannot be there, of course.

I don't expect to post here until after surgery, so see y'all later.

Rescheduled!

Just a short note today...

Gosh, I've been extra sleepy this week, maybe from the stress of having had my surgical date cancelled; however,  I received word today that my new date is September 13, 2017, to take place in Chicago, IL.
I don't want to get to excited yet, just in case it gets delayed again.  I had been so hopeful previously that I am, once again, dreaming (while I sleep) of doing things that I loved to do pre-stroke, like sewing and walking barefoot on the beach. :-)  Here's to seeing that maybe sometimes dreams do come true. ;-)

Good Night all.

Delays and Disappointment

On the 2nd of this month, I posted that I was scheduled to have surgery this month for the clinical trial of stem cell therapy for ischemic stroke patients with chronic mobility deficits; However, today I was informed it will need to be rescheduled  :-(  They could not yet tell me to when.  Not only am I greatly disappointed that I have to wait some more....hubby is highly frustrated because of all his employment rescheduling and reassigning to cover for him means he'll have to juggle it all again and hope that he will be able to upset the schedule and take the vacation time at the later date instead.

So, I guess it'll be another long while before I have news enough for another blog post. :-(

Feeling Better

I'm feeling better in many ways, so I thought I'd make an attempt at posting news of my progress again (emphasis on "attempt"; although I hope to post more regularly, my current desire to do so could change at any time, so no promises).

Let's see... after my last post in 2015, I had regular visits, over the course of 1 year, with a psychologist who not only got me to consider restarting on anti-depressants (which I did) but also helped me better deal with/accept my current situation and work to improve it. Then I was very fortunate to find a fantastic physical therapist that was a perfect match for me - he worked me very hard for 5 months, where I feel that I gained more progress than I had with all the other sessions with other therapists combined! The psychotherapy, along side the physical therapy, was just the combination that I needed to pull myself out of the deep pit of depression in which I had put myself (and having a most loving and supportive husband certainly helped provide a solid ground upon which I could stand and walk after crawling out of that pit). The love, respect, and gratitude that I have for my husband is so very much beyond words!

One day, (I don't remember when - maybe the end of 2015) I searched the Internet, looking for anything new in the medical world that may help the recovery of stroke survivors such as me; and, WOW!, I discovered that the UCSF had an on line survey for the recruitment of people with chronic mobility deficits after an Ischemic stroke, wishing to participate in the clinical trial of a modified stem cell product/procedure by a company named SanBio. After running it by my husband, I jumped right in! After meeting the requirements of the survey (weeks or months later - I don't remember exactly), I received a telephone call from UCSF at which time I had an interview with more questions, beyond those asked in the survey. Again a chunk of time passed, the length of which I do not remember, having met the requirements of the interview, I was invited to participate in the trial and sent medical request forms to sign that would allow them to request copies of my medical records pertaining to the stroke, to which I willingly and excitedly agreed, signed and mailed. I guess I 'held my breath', so to speak, for a number of months while they collected and reviewed my records. In October, 2016, I was finally told that I had met all the requirements to that point, the next step was to travel to one of there assessment sites for final medical testing (blood work, MRI of my brain and, a measurement of my current physical abilities/deficits,and lots of questions pertaining to my health). Initially, the closest facility to me was more than a 4-hour drive away from my home and, although I was willing to go, their scheduling was such that it would be a long time before I would be scheduled....I guess there were a number of participants in the same situation, so the SanBio people opened more sites around the country (USA). Finally, a site was added only 3 hours away, not as ideal as I had hoped, but better than 4 hours. In June, this year, my husband and I drove to the assessment site in CT, due to traffic, the 3 hours was actually 6. But, I passed the assessment and am now officially participating! I am wearing monitoring anklets, and have 4 different exercises that I must do twice daily and record it in a diary.  To learn more about the trial, check my LINKS tab.

Later this month I'll be flying out to OH for the surgery; I'm beginning to become restless, I want to go NOW! I've not done any flying since having the stroke so, being the worrisome person that I am, I'm hoping that getting to and using the plane's toilet will not prove too difficult for me.

Okay, that's it for today.