“Cures are within our reach – hope has transformed into certainty – and technology is the catalyst accelerating the pace from bench to bedside.”

Check the Research page above for more details on exciting recovery for those living with SCI.


Hope is here; standing and walking may be around the corner

DETAILS ARE IN THE PAGE ABOVE “SCI RESEARCH.”  Statistically, when a researcher reproduces their study and gets the same results, the findings are stronger, i.e. more apt to be due to the treatment than to chance. Dr. Susan Harkema did just that. When other researchers come to the same findings independently, it makes the findings even stronger yet. UCLA/Mayo Clinic and Swiss researchers have done that. Hope is here; standing and walking may be around the corner. READ ARTICLE (UNDER “SCI RESEARCH”) FOR EXCITING DETAILS.

Who’s Out There?

 I started this blog a year after my devastating accident at the urging of a friend. I began it with the purpose of sharing my thoughts and daily journey with others who either face or are wondering about how I’m doing on my Road to Recovery. Writing is therapeutic for me as well. I have been astounded by the number of people from literally across the world who have read the blog and taken a peek into our world. I say our because spinal cord injuries impact the lives of family and also close friends. They are the ones who step in to help when I cannot step. They help for the many crucial work-arounds as I call the methods to help with functions from my T-6 injury point on down that no longer operate.

Maybe you, like me, also wonder, “Who’s out there?” Well, there have been readers from all the continents except Antartica! There have been readers from 45 different countries. Those are humbling statistics. One thing that my husband and I had looked forward to in our retirement, that has been severely curtailed, was travel, especially international travel. How amazing it would be to visit each of the countries where others have read my blog. You’ve looked into my world; I’d love to visit your world.

Recently, there have been a great many view from Hong Kong. My husband and I thoroughly enjoyed a visit to Hong Kong less than ten years ago. I am intrigued by the person or people who have been reading at this time. If you have questions, want to ‘talk’ in more depth, have specific questions about other work-arounds, or need information, please contact me. If you submit a comment, I can keep it private. No one else needs to see it. I will certainly respond, again privately.

As I said many times, I have been given grace through this accident and experience. It is NOT easy; nothing about it is easy. But, I’ve been helped and supported. I’d like to help and support others.

I’ve been blessed through this experience. Watch for your blessings. Shalom, Collene

Courage and Legacy

  

Typically I would put this link (below) under the page on this blog “SCI Of Interest.” However, as I look forward to the arrival of our first grandchild, a little girl, I am thinking back on the hopes and dreams I had of being your grandma extraordinaire. A grandma who made her a quilt, traveled to her new home to help her Mommy and Daddy around the house so they could bond with you, and a grandma who would pick you up, cuddle you, and read you book after book after book so I could help you become literate and a book lover just like your parents, uncles and aunts, and grandparents. There is so much of that I will not be able to do such as sew you a quilt on which I can hand quilt the special touches which are always my favorite part of a quilt – keeping the legacy alive from my great-grandma and my grandma who sewed quilts for me that I still treasure. To sew with the two machines I have; one fairly “new” and one the antique, treddle Singer that Great-Grandma used, had converted to electric power, and on which I learned to sew in 4-H as a ten-year-old; require foot-power which I cannot provide. Yes, I could move the power foot to the table-top and use my right hand but to sew neatly enough for small quilt pieces one needs two hands to align the fabric. I cannot fly out for an extended time to help your mommy and daddy because I cannot climb the steps or provide the help around the house they would need. Fortunately, your other grandma is able to do an extraordinary job at that. I cannot pick you up out of your crib because I need one arm to keep myself upright. I would never risk dropping you. I cannot be there in person regularly to sing you lullabies or read those hundreds of nursery rhymes and stories to you. But, I can, as your daddy reminded me, do other things.

Once again, creative problem solving is essential. I have found options beyond traditional quilting. I can hold you, once you’re placed on my lap, and lovingly rub your back, talk with you, and play silly facial games. I can send you short audio tapes of me reading books so you learn my voice and are enriched by the benefits I, as a former reading specialist, understand. We can FaceTime you so you know my voice and enjoy the stories I select to share especially with you. Now, today on TV, Christopher & Dana Reeves’ son read his words to his younger self of what he learned from his parents. This reminds me that I can be there for you in very special ways – even if not it the dreamed-of, more traditional ones. You will learn about love, learning, family, responsibility, character, giving, faith, self-worth, and so much more from us, your parents, and other family members. You are loved even though you are not yet born.


 

One Who Makes Slow Progress

Sensitive questions are sometimes asked in masked ways. Only a crass person would ask, “So, you making any progress at all on your ability to recover?” Of course not, but friends and family who DO care are hoping and praying that recovery continues and they understandably want to know. Any positive movement would be a cause for celebration. A question that I do get, especially when I haven’t seen someone in a while, is, “Are you in physical therapy?” That sounds to me like a question I wrestled with myself early on. I mean, really, if I (you) work at it just a little harder, I (your) legs, feet, or even torso should begin to work, right? Wrong.

It isn’t about working harder. It’s about a spinal cord that was damaged badly enough from being hit by a fast-moving vehicle and being dragged out of my own vehicle and dropped on my head by a well-meaning, but uninformed passerby, to now block messages from my brain to my body below mid-chest. Therefore, my lower body doesn’t obey those commands that are given by my brain. Yes, I do exercise my upper body religiously and stretch as directed to maintain flexibility. But, more exercise won’t fix what’s wrong. Only a miracle or new medical research will fix it. That’s exactly why my family and I search for related, promising research and share it through this blog. (See Pages: SCI Research& SCI Of Interest in menu bar next to Home.)

Does that mean I’ve given up? Of course not! What I do is measure progress: progress that is made in minuscule steps forward. How do I know I’m improving? Lots of little ways:

  • Being able to reach buttons on the microwave touchpad that I used to need a stylus-on-a-metal-pole to activate.
  • Being able to bend and reach far enough over the sink to be able to spit after brushing my teeth without needing a small receptacle.
  • Being able to bend to retrieve items from the floor – without fear of tipping out. [I reach higher & further and am better balanced.]
  • Being able to slide into Van Gogh’s driver’s seat without planning 15 minutes to do so.
  • Going outside to drive Van Gogh without forgetting my transfer board.
  • Realizing that I am comfortable driving without tensing up and worrying that I would forget how to stop or accelerate at a reasonable pace around corners.
  • Realizing that a car started to enter the intersection and I automatically depressed the left lever, which is the way to brake. [Practice pays off.]
  • Learning that some bodily functions aren’t on the strict timeline I had when I left Mary Free Bed Rehab Hospital – and others are still on a strict clock. [Fine-tuning workarounds.]
  • Baking more quickly. The first time I made blueberry muffins, it took 30 minutes just to get out all the ingredients. Just recently I made them and I had them ready for the oven in a half hour. I still need help getting things out of the oven, unless quite light with an easy way to grasp the tray, but I can usually move the item onto the oven rack. It’s progress.
  • Realizing that my husband and I could together prepare a whole meal good enough to invite someone (elderly man at church) or two special people (parents) over without them having to bring any food – let alone bring in the whole meal like during the first years. [Progress with cooking and baking.]
  • Being able to maneuver my wheelchair to fit in a space or get out of one without hitting any furniture, cupboard, appliance, or wall as frequently. Note, I didn’t say never, but there are fewer dings, gouges, and smudges. Fine-tuning furniture placement has been imperative. [More mobile.]
  • Moving from the first summer of not being able to close the very-tight-fitting door, to being able to close it only if positioned just right with wheels locked, to being in an absolutely correct position but no lock to the wheels, to closing it with a good oomph.
  • Having success with one-handed-rolling. Progressing from simply rolling in circles, to very slow progress rolling one hand 1-2 pushes before switching hands for whatever I was carrying and pushing 1-2 times; to that process increasing to faster than a snails pace, to utilizing doors/ counters / handy stable items with one hand and the opposite wheel with the free hand. [More independence.]
  • Moving from discussions with spouse from guarded and ignoring the elephant in the room by closing the other out from daily discussions, to occasional ‘used to be’ types of conversation, to honest discussions of losses and what ‘died,’ to laughing and more normal conversations more often. [Real quality of life.]

These small measures of progress are within the context of my 60-something body that is physically succumbing to the ravages of age more quickly than it should. There are some things I cannot control but I’m doing my best to control what I can – my attitude.

I run across acquaintances, friends, or distant relatives who say, “I’ve been thinking about you a lot and I pray for you.” I pray for those who pray for me. I don’t know all their names so I pray in broad terms; God knows their names.

Blessings! Shalom, Collene (aka One Who Makes Slow Process)


Haste Makes Waste


If you’re reading this as a SCI survivor or family member, you understand that everything, I mean E-V-E-R-Y-T-H-I-N-G, takes longer to do than it used to. If you’re able bodied in how you move about, here is an insight for you into our world and a reason for you to count your blessings. Given limited time in a day, it is only logical that I work to streamline or use as few steps as are necessary in everything I do. However, my Dad’s adage haste makes waste comes back to haunt me.

Want to hear some of the problems I’ve gotten myself into? Some are embarrassing but I share to remind myself and to warn others of the risks.

  • One day it had been raining and my ramp was wet from our earlier stop. We arrived for a brunch at a new venue and finally found a parking spot with an opening on the correct side of the van so I could lower and exit the ramp safely. Feeling like we were in a bit of a hurry, I didn’t make sure my feet were both still on the footrest and also neglected to hook my left elbow around the handle located behind my left shoulder designed for someone to push. I started down the ramp, and it seemed we had a perfect storm. Whether it was the wet ramp, the toe of my shoe skidding down, or my body not hooked and secured into place, but my wheelchair slowed and my body kept going. I quickly found myself lying on the floor of the parking lot at the foot of my van’s ramp. Thankfully my husband was right there and has the strength to lift me back into the WC. Haste makes waste.
  • One day we arrived back in our condo parking lot and I decided to quickly release my seatbelt, unhook the security hooks in the van floor, turn 90* to exit the van, and be ready to go as soon as the car stopped and ramp was lowered. I was even feeling a bit smug for ‘beating the clock’ on this series of maneuvers. Imagine my shock when I looked down to watch the ramp’s final decline and noticed my feet. They had slipped off the footrest and were positioned IN the exit opening. I was horrified to see the ramp make its final decent where the top end of the ramp locks snuggly over the van floor. By this time, my shoe toes were being squeezed under the metal ramp. It’s as scared as I’ve been. Of course, I couldn’t feel my toes, and I envisioned crushed bones. I just knew once I got upstairs and removed my shoes, there would be blood pooled inside and I’d have toes that would need immediate attention by highly trained medical staff. While still in the car, I had automatically yelled to stop the ramp’s descent but pushing that button by my husband, of course, couldn’t do a thing to stop it. Using self-talk, calmly as I could, I headed upstairs, noting and thankful I wasn’t leaving a trail of blood. Ok, maybe only the ends of my toes had been damaged. Once I got upstairs, I could have cried with relief. You should know that the shoes SCI people buy need to be half to a full size larger than before. The shoes I was wearing (purchased post-accident) were large enough that the rounded, rubber ends that had been crushed only held open space, not my toes! Well, that’s a rushing mistake I’ll never make again. I now leave ample room between my feet and the ramp that will be lowered and always glance down for a visual on my feet.
  • Some wastes, thankfully, aren’t quite that dramatic, just frustrating. Thanks again to the SCI, my digestive system is a bit touchy. I’ve learned that my most reliable yet delicious breakfast is a bowl of steel cut oatmeal. My dear husband, who does the lion’s share of grocery shopping, happened on a 3-minute “quick” variety that I could cook in the microwave. I bought a safe microwave dish for this. By safe, read: light weight, large enough to prevent boil-overs, handles, lid that ‘locks’, and vents for safely draining. My sisters had helped me reorganize the kitchen so the items I need are low and within arms’ reach. Ok, picture me rolling to get out all the needed utensils and ingredients. When I went to grab the (heavy) oatmeal box, I lifted it but not slowly and carefully enough. (Haste) It slipped from my outstretched right fingers and thudded to the floor. Pause. (Waste) Can you picture the next step? Of course, the cover is off, lying next to an overturned cylindrical oatmeal box, with dry, lightweight, granular oatmeal in a heap. Ok, now think what you’d do. Pause. Nope, I can’t go get a broom and dustpan. Nope, I can’t drop to the floor to scoop up what’s there. Nope, I can’t go grab a vacuum. My only recourse was to get out the wastebasket, a piece of stiff cardboard, a spoon, and a small flat-edge device. Let’s just say that the cleanup was a slow process with many repeated moves. The worst part is that I didn’t do this once, but twice. Argh! These days I am REALLY cautious to get a firm grip on that oatmeal box.
  • The worst was the time that I got up during the night to use the bathroom. Upon careful reflection, there are three steps I might have short-circuited; I’m just not sure. Bottom line, it was dark and I had a controlled fall from the height of 24” (bed and wheelchair seat height). I was holding my transfer board and the far wheelchair arm as I transferred and felt myself go down to the floor. I broke my femur but it took 4 days to realize something was wrong and a week to realize there was a broken bone that needed treatment. I’ve been transferring for a couple years so it shouldn’t have been a problem. But, once again, any action not extremely cautiously executed can be dangerous. Haste makes waste.
  • Driving: I’m beginning to feel like the hand control for acceleration and braking is becoming automatic. Thankfully. But, the wheelchair I carefully position to get ONTO the driver’s seat MUST be in the same position at my destination in order for me to get OUT of the drivers’ seat. Any quick acceleration, sharp turn, or very firm braking can tip the chair backwards or shuffle it out of position. I’ve found that if I leave the transfer board on the wheelchair, it can slip off the chair or exacerbate the chair’s movement. So, another step – sliding the transfer board into the magazine pouch built into the back of the passenger seat. I also need to securely lock both wheels to help keep the chair in place. Guess how I learned I needed the extra step of sliding the board into the seatback pouch? On occasion I also forgot to lock BOTH wheels. Thankfully in both situations, there were people at my destination that I could call out to for some help once the ramp was lowered. Any haste in the steps makes waste.
  • There are countless times I have tried to open a door, drawer, appliance, or go through a doorway without making all the adjustments and checks before that move. Bang. Think of a three-point turn in your car. A three-point adjustment to my positioning would be ‘short.’ In order to get close to a wall or cabinet, I roll forward and back repeatedly in short, narrow, angled adjustments to get close enough to minimize damage from banging, scratching, or gouging surfaces.

So, the haste makes waste adage from my Dad is a daily reminder to just plain accept the extended time I need for everyday tasks. I’m thankful that I CAN make these adjustments in my own wheelchair and have good use of hands and arms to help maintain the independence I do enjoy. Appreciate your own blessings of mobility.

Shalom, Collenes

I Only Wish It Were Fiction

Sometimes people doubt that what they read in fiction could be true. Who would really do that? I only wish the following were not true. Unfortunately, they are.

My husband and I decided to go to the Coast Guard Festival but went the opening morning even though the real action and fun occurs weekends. Experience taught us the scarcity of parking spots for a handicapped [H] vehicle, especially one designed for vans which provide space to lower the wheelchair ramp. Obviously, any town with a Coast Guard Festival is on the water and already very popular.

We arrived and immediately went to the parking area set aside for [H] vehicles near the channel. Nope, that section was closed and instead held enough proverbial junk food trailers to keep several dentists in business. Everyone needs an “elephant ear” sugar-laden pastry at a festival, right? The alternate [H] parking area was not indicated in any way we noticed. However, we knew of out-of-the way, overflow parking tucked between the state park camping and the channel. We were delighted to find a [H] spot and it even had the slashed line section for vans. Our lucky day!

After enjoying a taste of the festival (not literally), we headed back to our van. Here is where it got interesting. A car with a [H] hangtag was parked next to our car but it was parked half in their spot and half on the slashed space. (Infraction) Luckily we were in angled parking so we hoped our lowered ramp, at this angle, could avoid their front bumper. My husband and I came around the back of our car, him holding out his fob about to push it and lower the ramp and me rolling up. Oops, in the slashed space that remained, the car occupants had set out their lawn chairs and were watching the boats going through the channel. They could have set their chairs on the sidewalk in front of their car but chose not to do that. (Rudeness) As they saw us, the woman asked if she should move. (Duh) We thanked her. Her husband stayed planted on his chair. The ramp was lowered, barely missing Mr. Rude, and I maneuvered my way back and forth so I could manage to position my chair to get up the ramp while avoiding damaging their vehicle. “You know,” I bravely and cautiously commented, “you really shouldn’t be parked on the slashed lines. That’s for ramps.” “Oh,” quipped Ms Rude, “it’s hard for my husband to park.” I bit my tongue and refrained from saying, “Well, it’s hard for us to lower the ramp without hitting your vehicle, leaving a crease in the metal, or rolling around the end of the ramp without gouging your car.” Sometimes it’s better to take the high road.

If only that were the only incident.

It takes arriving early and often driving around to find a [H] spot designed for a van. We appropriately park next to the slashed lines either straight in or backed in, dependent on which side the extra, slashed space is. Imagine our surprise and consternation to return to our van, not once but twice (!!), to find another car sandwiched between the two legally parked cars, right on top of the boldly, slashed lines! The first time we saw this we were stunned! My husband backed the car out into the drive area blocking traffic where we could, as quickly as possible, lower the ramp and get in. The second time, we were fed up and prepared. I now have the local police number programmed in my phone. I called the dispatcher to report the situation. She said a squad car would be there within 20 minutes. As promised, the car arrived in about 18 minutes; blocked traffic in the busy parking lot; prepared to write the ticket for the offending car; and said we could safely pull out, load up, and leave. Thankfully, my husband could drive. If it had been only me, even with the offending car ticketed, I would have had to wait for the offensive driver to return. On both cases, the car was so tightly parked that I can’t imagine how the driver or passenger could squeeze out. Having it towed would have been the other option. (More expensive) If the rude people had just arrived and were doing some shopping and dining over a lovely meal in this quaint mall, I would have been at their mercy. This was a repurposed, fishing cannery. It had obviously been grandfathered and had not upgraded their restrooms to ADA requirements. The stall in the mall bathroom marked ‘handicapped’ would not even allow my wheelchair to enter, let alone have the door close. Yes, I reported that to the manager of one of their restaurants. Yes, he had heard the complaint before and would pass it along -again- to the establishment management.

What can be done?

  • I believe we all need to advocate for what is right.
  • Don’t park in a marked handicap spot unless you have documented and current accessibility needs.
  • Even if you do have a tag to hang on rear-view mirror or permanent [H] license plate, use van-marked spots ONLY if you need one or it is the only spot left.
  • Call police if you see offenders. The police need to see the car incorrectly parked. A photo of the car, its license plate, and the sign are not enough.
  • Never use a tag unless it was given to you by a doctor and then for only as long as it is needed. Never share it with others. It is abuse; it is illegal.
  • It is illegal to misuse handicapped spots. Penalties range by state but are up to $1,250, 6 months in jail, and 50 hours of community service.

Hats off to Texas where Park Houston trains volunteers to monitor and write tickets for those who abuse handicap parking spots.http://www.houstontx.gov/parking/volunteer.htm

Count your blessings. Shalom, may all be well with you. Collene

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