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Tuesday, August 29, 2017

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.


Tuesday, August 15, 2017

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. :-(


Wednesday, August 2, 2017

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.