Two Weeks In the Life Of...

Here’s what I’ve been doing for the last 2 weeks:

Sunday July 15^th:  Rode the bike for 2x15 minute sessions, just a spin ride with the cadence in the 40’s and hit 50 once. Cadence = Pedal RPM. That becomes the competition; try to go faster in the second session.Really stiff today. I think I have a UTI, bladder burns but no cloudy urine. Did some launches, that is, sit on the side of the bed, put my nose over my toes keeping head and chest up then lift my butt off the bed like I am standing.

 Monday July 16^th:Very tight in the morning before and at physio.  Got up in the standing table for another ½ hour. Stimulation on my left arm with Dr. Ho as their expensive machine didn’t work all that well. Disappointed with prone standing which is standing with my trunk over a table and my face in a face toilet. Couldn’t get my arms out and my legs weren’t strong enough to keep me up, I have several excuses, oops reasons 1. Legs tired from the standing table 2. Legs tired from the bike and launches on Sunday. 3. Damn UTI. Couldn’t get my arms out because they had my left leg stretched out, remember, left leg bone is attached to the left arm bone.

Disappointed as this was the first time I couldn’t do what they asked

Saw the respirologist in the afternoon, and I do have sleep apnea.Need a new machine that records some more measurements. What happens now is the face mask goes on at 10:30 to 11 and I wake up at 4 or 5 with a dry mouth and I take it off and snooze and snore ‘til 7. The respirologist can download the info and see what I have been doing.

Something creepy happened in the parking lot when we were getting into the car. Darcy was getting me into the car and a guy pulls up in the next space and asks if we need help, which we didn’t. He got out of the car and came around behind our vehicle and asked again if we needed help, we said no again. I got loaded in the car and Darcy put the chair away, and as we pulled out he drove away. Perhaps he was just a Good Samaritan but we were a bit leery.

Tuesday July 17^th: In the rec pool with Yonna and Grandpa and did lots of stretching of arms and legs, lots of hamstring stretches then squats, to standing. Just about peed in the pool but thought I could hold ‘til I got home, made it out of the pool, then a mad dash to the change room…peed a little on the deck, just a little. Went to lunch with Grandpa, Yonna and The Sarge at Ambrosia House. Had a chicken pie and a bowl of fruit,Yonna left without paying…..she did go back and pay a couple of days later.

Wednesday July 18^th: OT worked my arm for an hour and used Dr. Ho on my left triceps. Then in PTthey put me in prone (lying on my tummy) and then slid me off the end of the table to prone standing…have to work very hard at turning muscles on and off. When they stood me up I was feeling quit nauseous. It is amazing how fast the physios can move when they think I am going to barf. I now know what Procol Harum meant by ‘A Whiter Shade of Pale’…. How many of you remember them? That was the first time I have been nauseous in a long time.

Thursday July 19^th:Another great massage from Jeanie today. Yonna came over and I got up to almost standing straight up about 7 times…felt good I was a afraid at first to stand with only one catcher but Yonna reminded me that she is bigger than me or at least as big as and could easily hold me up and she could probably bench press me as well. Of course I want to stand more on my right leg and since I can’t get my left heel on the floor I tend to rotate to the right. Still tight and having spasms, and it feels like a bladder infection AGAIN. Guess I better see the Doc. Since I sleep on my back and don’t move all night, I am very stiff in the morning and it takes a good hour to loosen up. I know I am stiff when the PSW has to help sit me up on the edge of the bed in the morning.

Friday July 20^th:Supposed to go in the Rec pool but the lift is broken, still waiting for a part. Yonna, Grandpa and Karen came over. Yonna stretched my left arm and Bob worked my left leg then went from sit to stand 6 times with very little help,that is I basically stood up with very little help…yeehaw. The bed was up a bit higher than a normal chair but I got up straight and then everyone let go andI was able to stand on my own a couple of times and stayed up for a minute+ even with weight on my left foot.Grandpa was on the left arm, Yonna was in front holding my hands and Karen was behind making sure my butt was tight which is a very important part of standing and walking. Then Yonna stretched my hamstrings, my quads and hip flexors…yikes. It felt so good when she stopped, but it needs to be done.

More good news, the indoor Rec pool is closing for the month of August not good news,but there is an outdoor wave pool that has an adult swim period,with no waves.They will take the lift over, if and when the part comes in, so I won’t miss a month out of the pool…another yeehaw

Saturday July 21^st:A rest day, went to Karen and Terry’s for a BBQ, felt good to get out. Again everyone drank wine and I had water…should have taken some wine gums…. hee,hee.

Sunday July 22^nd:Peed on Darcytoday. You know how baby boys sometimes create a fountain when gettingtheir diapers changed, well it was something like that as she was positioning the urinal.

Rode the bikefor ½ hour. Watched the great escape on TCM. Did exercises in bed, pelvic tilts, leg extensions, crunches and used Dr.Ho on my forearm and on my triceps. I usually do about an hour exercise routine in bed in the evenings.

Monday July23^rd:No physio today as Laura is away. Yonna came over and did some massage and stretched the hamstrings and stood me up 5 times. Stood just holding Yonna’s hand and then I let go and stood by myself with Darcy making sure my bum was tight. The legs got tired and form fell apart so we quit. My heel was on the ground but it doesn’t hurt the calf as much as standing in PT. After lunch went on the computer and watched several episodes of Cosmic Journey…neat stuff.

Tuesday July 24^th:A rest day, watchedmore stuff on the origin of the universe. Did exercise routine at night in bed.

Wednesday July 25^th:In PT did prone standing, need to take some more pain pills so I can straighten out my knee and flex it more. Straightening my knee hurts the calf and hamstring and when they hurt I tighten up my left arm and it won’t come out to the side. They want me to actively sit up straight, that is, head up shoulders back, chest out. I have never sat up so straight.

Rode the bike for ½ hour in the afternoon and tried moving my arms like in the chicken dance and kept pedaling. Trying to separate the body parts and have the arms and legs move independently. The brain needs to figure out what to move. I don’t stop pedaling when I do the chicken dance but the cadence does fall off.

Thursday July 26^th:Rode the bike for ½ hour did chicken dance and the arms and legs were moving independently. It’s like rubbing your tummy and patting your head

Friday July27^th:PT got me sitting straight up and got me thinking about separating movementsand I must do it all the time, move the left arm without tightening shoulder. Must move left leg without moving left arm. Same as sparring when I move, I must not lead with my head must start to lead with my chest.Had fastest speed to date on the bike, first time over 20 kph in a 15 minute ride and distance over 5 K.

Saturday July 28^th:Thanks to all the Karate club members who came over and weeded the gardens and trimmed the shrubs etc., it looks great. Wow can Marianne chug a beer.

Backvery tight and sore did 30 minutes on the bike…easy spin. Tired and I slept most of morning…damn UTI, must see the Doc.

Sunday July 30:Went to Coffee Cultures and met Sensei John and some guys from the cycling club. I drove the electric chair and Darcy rode her bike and I knocked her off it. No she wasn’t hurt…much. I was in front and turned to miss a pot hole and hit her front wheel and she went down and got a little road rash on her knee.Did  ½ hour on the bike and kept the speed up over 20 kph

How am I feeling?

Went surfing for spinal cord injury (SCI) and perhaps I shouldn’t have. The literature says what you have at 6 months is what you get and after 9 months you plateau. I’m now at a little over 11 months and let’s see what I have. Right arm has about 40 – 50% function and I have to see what I am doing as the sensory is not all there i.e. can’t feelwith my fingers. Left arm moves a bit but it is very stiff at the elbow and I can’t straighten it out. The wrist won’t bend much and stays at about a 30 degree angle most of the time. The index finger and thumb move a bit and there is very weak pinch strength.The other 3 fingers are usually curled up in my palm. Sometimes they are soft and can be straightened easily, other times they are very stiff and it takes a lot of work to straighten them. When they are soft I can wiggle them a bit but nowhere near opening my hand. Since there is some movement it means some message is getting through…perhaps it means I need to get the extender muscles on the back of my arm stronger. Sensory on the left hand changes and some days it is numb and sometimes it is hypersensitive…very strange. Sometimes when I connect Dr. Ho (electrical stimulation) the fingers open a bit and sometimes they don’t move at all….again very strange.

The legs are getting stronger and they tell me all the motor muscles are there, I have to stop moving as one big block and strengthen my core. The goal is to walk, the question is ‘When’?

I guess it is like any training plateau you just have to work harder to get off it.

Thanks for listening to two weeks in the life of….

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July 14th

July 14^th

At physio I am really focusing on my body parts and not kibitzing with the therapists. They like my progress but I have to concentrate on not tensing my left arm every time I move my left leg. If I try to move anything my traps (neck muscles) turn on. I was in the pool at Parkwood on Wednesday, July 11 and the thing I heard most was ‘Glen relax your neck!’ I must consciously think about my neck as well as what I am doing with my legs.  It takes a lot of energy for me to multi-task. For those of you who saw the video of me walking in the pool I found out there was quite a bit wrong with it. It felt great to be moving on my own but my bum was out and I was not over my feet. To walk I must turn on my gluts (bum) first and then put my weight on one leg and step with the other with my butt under my shoulders and this is where I must concentrate on relaxing the rest of my body. That’s the kind of rewiring the ol’ brain needs to do. The brain ain’t got it yet.

I was in the pool with one of my old, oops, former roommates. He was told that he would never walk again as he had an infection in his spine and had several vertebrae fused in his lower back. He drove in from St. Mary’s and walked in unassisted, talk about encouragement. He mentioned that he was where I am 3 to 4 months ago.

Grandpa Bob was in the pool with me at Parkwood and one of the physios showed him what I should be doing in the pool. They seem to be pleased with the way I am standing both in and out of the pool. I need to do a lot of core work and get my bum back…do lots of pelvic tilts…I am doing them right now. 

Got a great email from a friend’s mother, I’ll call her Marj.  Note I have never met her and we just started communicating via FB when I fell off the wagon in January and February. She would send me these subtle notes just at the right time, now I find out that she was/is a psych nurse. Now I’ve had 4 professionals, 3 psych nurses and a psychiatrist telling me to stay on the antidepressants. Marj explained it the best, I am good at healing my body but my mind and brain have taken a beating in this whole event and I have to take meds and give my brain time to heal as well. I have to let the people who know how to treat my brain do their job.  I am on the meds until they say I can come off.  Marj gave me the perspective that I understand. I need to heal my brain, simple as that. Perhaps if I had sought help for my claustrophobia, anxiety and panic attacks prior to the crash I could have been cured a long time ago.

Things you learn along the way. We thought it would be great to get one of those nice curved, ergonomic pillows that would keep my head and neck in a comfortable position with a notch in the side so I could lie on my side and use the CPAP…the face mask that I wear for sleep apnea. After several tries it just didn’t work. The reason was a Homer Simpson ‘Doh’….my neck is fused and doesn’t bend so the curved support becomes a pain in the neck. Someone was also being a smart ass, since I can’t drink wine she bought me a bag of wine gums.

Last Monday, the 9^th, I stood at a standing table for ½ hour. The standing table is just that, a table that you stand up to. The interesting part is getting up. Wheel up in the chair and belts are strapped around my butt and the machine pulls me up to a standing position and I put my arms on the table and stood like that for ½ hour. They also tried stimulating my arm but the unit didn’t work very well. I took my Dr. Hoh unit that I used to relax my legs after a hard ride, to the physio for her to see if it’ll work on my left arm. I’ll find out on Monday.

My left quad is very weak and I was told to put a ball under my knee and straighten my leg and hold for 5 seconds and do 3 sets of 10. I cheated a bit, put a ball under my knee and did 5 sets of 10 with a 5 pound weight on my foot and held it as long as I could.…yup as Darcy says, I overdo everything. Speaking of overdoing, on Wednesday, July 11th, I had OT for an hour to loosen up my arms and then an hour of physio in the pool. I was invited to watch Le Tour de France at John’s with The Sarge and Grandpa Bob. Came home from London at 1:30, ate lunch and went to John’s at 2:30, but of course we had to wait for The Sarge. Oh yes, Grandpa Bob came to my place and pushed me over to John’s in my manual chair about ½ a K. Needed the manual chair so they could get me into the house and I had to train them to do that. John taped Le Tour and we watched it commercial free. It was good time watching them drink wine and eat snacks while I drank water…just kidding it was great to be out. Since I don’t move around too much and burn any calories, I watch what I eat so no snacks. I digress. About ½ way through le Tour I started to tighten up, my arms and legs started to tingle and I was very uncomfortable but stayed for another two hours got home at 6:30.When I got home…again Grandpa pushed me home, I was absolutely pooped, had trouble eating supper and getting into bed. I will never learn.

If I did every exercise that PT and OT wanted me to I’d be working out from 6 to 6. I do work out and I was on the trainer for ½ hour and did 8.3 K at an average speed of 17.3 KPH, average heart rate of 102 and a maximum of 125. The trainer helps my left knee a lot as it bends the knee from about 15 degrees to about 95 degrees and it strengthens my quad and gluts. Hopefully this will get my bum back!

I was in the pool again on Thursday the 12^th, and Yonna had me floating around to try any relax my body from my Wednesday escapades. The water helps a lot. I was standing at the edge of the pool hanging on to the edge trying to shift my weight from one leg to the other. An older lady who I see in the pool told me I am getting better every time she sees me, that was great encouragement. I got home at 12:30 ate lunch and had a great massage from Jeanie who comes to the house once a week. She loosens up everything with a deep muscle massage, painful at the time but feels good after.

How am I feeling?

I am feeling good about OT and PT. The pool is working well both at Parkwood and at the Rec centre and as mentioned the massage is helping a lot. The email from Marj was uplifting as she says, ’Acceptance is not defeat!’ Marj was very active as a runner, cyclist, yoga instructor, loved working in her garden and as mentioned a psych nurse.  Marj is in a power chair too and she helps me out a lot.

Constipation is gone for now and you don’t know how good that makes me feel. I am eating a tablespoon or two of hemp hearts and then I smoke some and that makes me feel real good….just kidding.

I am not feeling depressed as things seem to be heading in the right direction.  My mood is good and Darcy and I have had a good couple of weeks.

Thanks for listening….

Happy Canada Day

July 1^st

It is surprising how fast the time goes, hard to believe it’s almost 3 weeks since the last blog and lots has happened. On June 14 Darcy and I got a Red Cross van and went to Meghan’s School, Worsley Public School in Wasaga Beach. The students, 500 of them did laps, 0.8 k around the school for equivalent distance of the Rick Hansen 25^th Anniversary of his Man in Motion ride across Canada. The students did 15,000 laps, 12 000km, in 4 weeks and completed the distance on May 22 the same day the Hansen Relay of Many finished in Vancouver. I was supposed to have been there on May 22 but there was not a Red Cross driver available. The van picked up Darcy and me at 9 am on the 14^thand we arrived at the school at 12:30. Meghan teaches grade 2 and her class had won a pizza lunch. They all agreed to have the lunch on the day that I was there.

After pizza, Meghan had arranged for the entire school to go out and do as many laps in 20 minutes to get points for their teams. They got 10 points a lap. Note: the rest of the school didn’t know that I would be there and they seemed genuinely excited to see me. As mentioned there were 500 kids, kindergarten  to Grade 8. I did 2 laps with them and many stopped to say ’hi’ and one little fellow stayed with the entire first lap and didn’t stop talking the entire lap.  One student in Grade 8 did 200 laps, that is 160 k in the month and another did 151 laps, 124 k. I had a Rick Hansen medal and a touque that Kelly, my daughter received doing the Hansen Relay in Tillsonburg. First place got the medal and second place got the touque.  Got a little surprise as the grass was a little rougher than I thought it would, just glad the 20 minutes was up after the second lap. Then back into the class room to say good bye to the kids.  I was under the impression that kids were out of shape but, I was impressed with the condition of these kids as even the kindergartens did laps and surprisingly the Grade 8’s did as well. Back in the van by 3 and home by 6 pm. A rather long day but well worth it. If you ever ride 500 k in a van in a wheelchair, being tied down in front of the back wheels is a lot better than being behind the wheels.  It is quite amazing how high you can bounce when behind the wheels, the chair needed 4 tethers and a seat belt to hold me down.

It seems you can make a difference. Meghan is receiving letters from parents about how her program of walking for Rick Hansen’s Relay of Many and keeping them updated on my condition and the visit has had a positive effect on some of the kids. 

a letter Meghan received:

    

"Miss. Steen,

Thank you for all you have done for E----- this year. It is very much appreciated! I really admire how your family has turned your father's accident into such a positive and inspirational learning experience for the kids.  I think it will be one of those 'life changing-life lessons' that they will remember all their lives.  thanks for sharing your lives this year.

-love the L---------- family"

Ya know it isn’t very often we  get to see our kids at work but watching Meghan with her class and organizing the 20 minute laps made the ol’ heart go piter-pater. It is nice to know that we got 500 kids aware of spinal cord injuries and got them walking. Perhaps when I’m walking I can go back and do a lap with, just for fun….a goal!

Mom and dad @ Worsley

    

Walking around the school

the bumpy ride around the school

Next on the agenda was the Harlequins Rugby Club in Brantford. They had a Family Day with all the kids playing, both boys and girls under 8 to under 18. I got there in time for the Senior Men’s game against Stoney Creek, a club that I played against. It was great getting re-acquainted with guys, some I hadn’t seen for 30 years or so. I had to leave before the end of the game but Brantford tied it up as we were going out the driveway.

Yonna and Grandpa Bob have been taking me to the Rec Centre Pool at least once per week….

working out in the pool with Grampa Bob, and Yanna

standing in the pool

Being in the water loosens me up and the physio at Parkwood commented on the improvement while standing…it was the straightest I have ever been, that was on Wed. June 27. I should describe standing. A physio is in front of me sitting on a stool with her knees pushing just below my knees to keep them straight. A Physio on my left side, holding my arm/shoulder.  A Physio Assistant on my right with my arm over his shoulder. They all heave ho and I get into a standing position. Once up they have arch my back by pushing my butt forward and get my gluts turned on and then my quads and then my core. Once everything is on, they release me a little but they all stay in position. I stood up by myself for couple of minutes, I would guess. It is important to get up straight as those learning to stand and walk again, want stick their bum out and lean forward, we have all seen elderly people in their walkers walking with their bums out leaning on the walker. Just need to get the muscle memory to stand straight. It is strange as my core used to be very strong.The additional pool work and massage seem to be paying off. The Physio I have, works 2 days a week and I see her on Mondays and Wednesdays. Since Monday is a holiday she is going to see me on Friday…. yeehaw!Yonna is retired and I have become her second job.

As you may or may not know I ran a Karate School in Langton for several years. My knees and hips got so bad that I gave up the school and started long distance cycling. My reason for leaving was I felt I had to lead by example and I could no longer do that. A friend told me it was my ego that made me quit. Well I missed teaching so much that I was going to open another school last September, in Houghton a small community out in the boon docks of Norfolk County.

The kids in the Langton Class wanted come and weed the gardens and clean up the yard but since I had someone doing that, we had a pool party and BBQ at my brother in-laws back yard last Wednesday. It was great, about 25 people…kids and parents showed up.  The students, aged 5 and up put on a little demo of their Kata and Weapons Kata, they had been learning. The adults showed me some of their Kata as well. Then it was 8 o’clock and I had to run, well ride home for bowel care….grrrr!

There is a lot going on now and I should start writing a blog a week then you wouldn’t have so much to read…we’ll see if that works.

How am I feeling?

Hmmmm….I am getting off some of the antidepressants and I haven’t noticed any changes in mood etc. The psychologist was here on Thursday and she seemed to think I was doing ok. I am feeling good most of the time and being busy helps a lot. Weekends are a little slow and I am glad when Monday comes. As mentioned in other blogs I get up in my chair usually by 8 or 9 and then fall asleep at the computer and even this AM while watching the Tour de France I feel asleep. I think it is a hangover from the sleeping pills. I am on a high dose, 15 mg and have been since September. Most people go on 7.5 mg or less for a couple of weeks. It is time to start weaning off the pills. The psychologist says it should be in 2.5 mg increments since I have been on them for about 10 months. Iam starting to get off the laxatives as everything at that end seems to be coming out ok…hahaha… next is to get rid of the suppository for both Darcy and me.

I don’t know what is happening with the ol’ body, that is the muscle tone is not going away. The Baclofene has been increased to 80 mg per day and there is no difference. Last Monday I did find out I had a urinary tract infection…UTI. A UTI can cause muscle tone. Started antibiotics last Monday and they will be finished on Saturday, June 30^th. I still have a lot of muscle tone and my neck and right arm look like I have been lifting weights.

I still can’t work my left leg without tensing up my left arm. I can work the left arm without affecting the left leg. Just gotta get that circuit rewired. Riding the bike is difficult as the left arm, stomach, back and ribs go into spasm so I haven’t been riding much. As they say if you don’t use it you lose it. Well I am losing my butt and it is getting uncomfortable to sit very long even in the wheelchair….gotta get doing bum exercises or start eating a lot more.

Grandpa Bob and I played a nasty trick on the Sarge. They were loading me in the car and the Sarge has always been concerned that he is hurting me. As soon as he touched my leg I let out a yell. It was a YouTube moment. The Sarge dropped my leg and started to leave the garage. Grandpa Bob and I could not stop laughing. The first words from the Sarge were “There will be retribution!”. I didn’t think he would be so vindictive. Oh yes another improvement is, I can get my leg in the car with very little help and very little pain.

    

  It's July 1^{st ,} Happy Canada Day…

  I am very glad that I live here!  

  

  Thanks for listening…..