NOTE: this is a copy (with minor changes) of a blog I started at strokenet.org (since one cannot leave comments at this, my other stroke blog, unless one is a member there, I decided to create this 'copy blog here at Google's Blogger to enable my friends and family to leave comments if they wish to).
My reasons for starting this blog are three-fold,
- to keep a record of events, experiences and my thoughts since experiencing a CVA (Cerebral Vascular Accident; or cerebrovascular accident - I prefer this term to that of 'stroke').
- to provide an easily accessible resource for my friends and family to learn about and keep abreast of my post-CVA situation as well as the progress I am making in my recovery.
- in hopes that by telling my story it may help another through their own stroke recovery.
Since this blog is started 5 months post-CVA, this first post is mostly to provide a bit of history (time-line from onset to when I returned home and to the current day), as best as I can remember.
COURSE OF EVENTS:Tuesday night, July 16, 2013, After having a late dinner with husband and son, I was at my computer working on finishing up one of my digital scrapbooking designs that I had planned on completing for a project due the end of that month. I remember feeling that I couldn't find a comfortable position in my chair and that I was frequently shifting my bottom in the chair attempting to get more comfortable, then I had a tickle in my throat, which I tried to clear and then promptly started coughing, the sort of cough one gets when liquid is swallowed but doesn't go down correctly (sometimes referred to as 'going down the wrong pipe'). Luckily, both my husband and son were in the same room as I. My son asked me if I was OK and I said that I had a tickle in my throat was all. He then asked if I was sure I was OK because it seemed to him as if I was disoriented. At that moment, my husband promptly got up from his seat and came to my side, took one look at me and told my son that I was having a stroke and to call 911. I remember talking briefly with the 911 operator who asked me to speak the words 'The early bird catches the worm.' I guess I didn't annunciate well. the next thing I knew, there was an ambulance at my house and the paramedics were in the house with a gurney to take me to the ambulance. I don't remember the paramedics transferring me from my chair to the gurney nor the trip to the ambulance nor the trip to the hospital except this one thing: I was in a sitting position on the gurney and I remember looking down at my abdomen area and seeing an arm across me that I didn't recognize as my own so I asked who's arm it was and was told it was mine. That was a very weird experience. I've no idea how long I was in the ER at the hospital and I only remember 2 things happening there (1) vomiting into my oxygen mask and having my mouth suctioned afterward. (2) I remember a male voice (the doctor?) saying they were going to have to cut my shirt off to remove it and me asking, 'Can't you just take it off over my head, the normal way?' they said, 'No, it's too late for that.
I was told that I was given a clot buster,drug called TPA which is what saved my life.
I must have been unconscious for awhile later because I've been told that I had a CT scan of my brain done, but I've no recollection of that at all. I was also told that I spent a week in ICU but my memories there are spotty at best. I remember a couple of the nurses that cared for me and a discussion about hospital gowns (I asked why they were called Johnnies, but no one knew the answer); I also remember the excruciating headaches ( they gave me morphine for those - maybe this is the reason I remember so little else); being very pleased when they allowed me to brush my teeth the first time; having a urinary catheter placed and begging them to remove it every minute afterward (they must of got tired of listening to me - they took it out the next day); going for a ride in the hoyer-lift (a large sling that hangs from the ceiling to mechanically lift and carry a person from bed to other equipment) to use the bedside commode.
Outcome and Therapy:The CVA (which is believed to be the result of a blood clot formed in my heart earlier that day during an episode of Atrial Fibrillation - something I've had intermittently for many years, this translates to an Embolism in my brain) caused a complete paralysis of the left side of my body (medical term for what I am now: left-sided hemiplegic). I could not walk nor use my left arm or hand in any way (not even to lift them) I couldn't even sit upright without assistance nor remain seated without falling over (imagine an adult-sized 4-month-old infant who has not yet developed the skill of sitting without being propped); I smiled with only the right side of my mouth and I drooled just like a teething infant. After the week in ICU I was transferred to the acute rehab unit and was there through the end of August. I received Speech Therapy (mostly to keep watch on my swallowing ability, being sure I could eat without choking, etc. and to help with my mental processing and exercises to strengthen the facial muscles), Physical Therapy (PT) and Occupational therapy(OT) each for 2 hour-long sessions daily, there was an occasional Recreational therapy thrown in too.
I didn't want to leave the acute rehab but was more or less forced to do so by my health insurance provider as I had apparently acquired enough skills to take me out of the 'acute need' status - I could sit without falling over, I could stand and do supervised walking with the help of an AFO(ankle and foot orthotic) and quad cane, I was no longer drooling and my smile was balanced again. I could do some dressing of myself with minimal assistance. So, because I was not ready to go home at that point; home wasn't ready for me; I was considered 'sub-acute' so they wanted me transferred from the more expensive Acute rehab to a less expensive 'sub-acute rehab.
Husband and son, went looking at the local sub-acute facilities (skilled nursing homes with rehabilitation services) and located one for me. I transferred there at the end of August (1.5 months after my CVA) and remained there until going home at the end of October. While at this new facility, I had the same therapies that I had at the acute facility (Speech, OT and PT) these were each 1 hour daily. A lot was accomplished in the 1-hour time slot, at least for the PT.. They were trying to get my knee and quad muscles to come back to allow me to walk on my own with only the AFO and cane, mentioned earlier (but it seemed that no matter what they tried nor how hard I worked, my knee just wasn't strong enough, it kept buckling; so after awhile, not sure how long,they had me try walking with a KFO (knee and foot orthotic - the knee area locks in the straight position to kepp the knee from buckling but then must be unlocked before sitting) and a quad cane. With a lot of practice, I finally got the hang of walking with it; it required that I lift my hip in a somewhat unnatural way in order to advance my foot forward to walk. But I did it and I was walking! Two weeks before leaving the sub-acute facility, I received my own custom fitted KFO. Initially, My KFO had the knee unlocking mechanism placed at the top inside -thigh area- but it and the metal locking mechanism at the knee protruded so much it caused bruising to my other leg just from walking with it. It was most uncomfortable. About a week or two after returning home, I made a trip to the prosthesis and orthotic company that fabricated my KFO so they could make adjustments (the knee lock area was reshaped so that it was closer to my left, braced leg and protruding less. They also removed the unlocking mechanism from the inner thigh area and installed what they call a baler (a sort of hoop-shaped bar) at the back of the knee. The baler is lifted to unlock the knee before sitting. Because the baler protrudes from the back of the knee and I need to reach it with my right hand to unlock, they also attached a short strap to it that sort of is pinned to the top of the inner thigh area for easy reach and to ensure that I won't lose my balance and topple over when I intend to sit. As you may imagine, this limited my choice of clothing as I couldn't wear pants that covered the release strap. Luckily I kept my leggings (stretch pants) from the 1980's an also luckily, they fit me again. I wear the leggings under the brace (KFO). Unfortunately, the leggings aren't exactly warm enough for this freezing New England weather; however, I now have some GOOD NEWS to share (See GOOD NEWS (PROGRESS) Section below. Additionally I've had a problem with the entire left side of my body being painfully hyper-sensitive to touch of any kind since the beginning but of late it seems worse on my torso and left arm and hand and toes and fingers. I see my neurologist in January so I'll be sure to talk with him about it.
GOING HOME:Going home was a mix of emotions for me. I was so very homesick after 4 months away and glad to be going home of course but I was scared too; I had developed a routine with which I was comfortable at the nursing home and the staff knew how to help me with my activities of daily living (ADL)... going home meant learning new ways in an environment that was not adapted for handicapped living and learning new ways to do things and teaching Hubby how to help me. The first night was the toughest and Hubby had a lot of running around to do. Because the bathroom toilet is so low and there aren't any bars mounted on the wall next to it, I couldn't get up off the toilet on my own, hubby had to give me a hand every time. He soon went shopping for a commode that would fit aver the toilet. This has worked well, it heightens the seat and has arms from which I can push myself to standing,
It's a good thing I had that KFO when I went home because my wheelchair was too wide to fit down my hall to the bathroom and bedroom.
To this day, I am still without any function in my left arm and hand. I wear a sling when standing and walking (like the kind you may see someone with a broken arm wear) . Initially this was given to me, to be a visual queue to the nursing aids to alert them to not grab my arm when assisting me but, another reason may have been (and I'm not sure of this) to have my arm supported while walking instead of just dangling at my side.
While I was at the sub-acute facility, it was discovered thatI have a subluxation of my left shoulder (as explained to me:the muscles and ligaments that hold the shoulder in it's socket become stretched out causing a partial dislocation of the shoulder.). This, at times is very painful. At a recent visit to an orthopedic, I learned that there's nothing to be done to fix the subluxation (aside from continued therapy and the hope of my brain creating new signals to my arm) but I can, and supposedly will, be fitted for a shoulder support which will hopefully make me more comfortable.
GOOD NEWS (PROGRESS):MY knee control and quad muscles are starting to return and I've been walking with just my AFO and the quad cane for 1 week now! It's the first time I've felt 'HAPPY' since the onset of my CVA! Not only can I now wear clothing that's more appropriate for the weather, but this also gives me hope that I may truly be able to walk again some day without the use of orthotic equipment. Hubby is hoping it will be in time for our 25th wedding anniversary, next year, so we can celebrate BIG and with a romantic slow dance.
Speaking of Hubby, I need to sing big praises for him with all the work he does and great support he's been for me. I married one great man! He's been by my side every day since. Works all day, commutes an hour to get home (sometimes more) takes care of dinner (and clean up after), and the laundry (basically, everything I use to do) and in addition to those, helps me to undress and get into and out of the shower each night,also into bed with all my night time gear (arm and hand splint - to keep my fingers from curling and contracting and another foot orthotic to prevent foot-drop) and a bunch of pillows to support my position or to prevent joint and back pain while I sleep. My shower from start to finish (including gathering clothes and towels)is about 45 minutes, getting settled in bed can take a half hour. Poor guy, he's quite exhausted and starting to feel the affects of the extra physical exertion needed to care for me. His previously injured joints are beginning to complain quite loudly.
My home therapies have been discontinued as of last week now I'm left with having to:
- get my doctor to write a prescription to obtain therapies on an outpatient basis
- find a rehab facility that has adequate services for CVA survivors and that has weekend and/or night services
- find transportation to the rehab facility (any volunteers, my friends?)