An Adventure

Sun Sept 9: An easy day did some stands and some stuff in bed and watched Serena win 1.9 million dollars…by winning the US open tennis tournament, somehow that ain’t right.

Mon Sept 10: A good day at PT. Jody the OT was there as well. Laura wanted to show Jody how I can stand. Laura was on my left and Jody on my right. Laura whispered in my ear…you better not screw this up, and I didn’t. Got up quite easily and stood for about 10 minutes, sometimes holding the table and some of the time balancing. The problem is the left side collapses and my left hip goes out when I put weight on my left leg. My homework is to strengthen my left side but I haven’t figured out how to do that yet.

Got home from Parkwood and did 25 minutes on the bike. Just an easy spin since I hadn’t been on it for about 2 weeks. Since there was not a lot tension my arms didn’t tighten up too much. We had forgotten about a massage with Jeanie and she showed up at 3:30…the massage felt great after the bike.

Did some standing before bed trying to figure out how to strengthen the left side without losing the proper posture….Hmmmmm…ended up doing 1/2 squats trying to put weight on the left leg while holding the left hip in.

Tues Sept 11^th:Remember exactly where I was on 911. I was at work and when I heard about the planes hitting the buildings, I took the day off and went to my former boss’ home and watched it all unfold. The only good thing George Bush ever said was when he called the terrorists ‘faceless cowards.’

Got up at 8:00 and went on the computer and fell asleep again. You’d think I’d learn that sitting with my head down on my chest and oh yes drooling out of the corner of my mouth and causing my neck to ach would be enough to smarten me up. I need to start working out first thing in the morning.

Yonna came over and we went to the pool. Grandpa Bob wasn’t available as he and Gord took the train to Windsor and will be riding home and will do some trails and site-seeing as well. Floated around in the pool for a while and Yonna did the usual stretches. Seems the legs are loosening up a bit as the legs are getting further apart. Rosa a lovely Hungarian ladycame over when I was standing and told me that when I am walking she is going to take me dancing.I told her I couldn’t dance but I would hold her while she did. I was standing and running on the spot and getting my knees up. This helps in getting me to shift my weight from left to right foot. Surprising that the stiffness in the left knee prevents me from moving quickly.

Wed Sept 12^th: On the way to London with the Sarge driving, I thought I may have to pee. That is when Darcy mentioned that she forgot the bag with the urinal. I thought I might be able to make it to Shoppers on Commissioners Road, but I couldn’t. Darcy improvised and emptied her clear plastic makeup case and we used that as a urinal with only a little spillage. The Sarge was very thankful Darcy was there as he paced around the car while Darcy looked after things.

In OT Jody stretched my left arm and did some work on my right. In PT, did hamstring stretches and hip flexor stretches and on the treadmill with 40% body weight on my feet. Went for a little more than 3 minutes and some rest and another session for a total of 6 minutes.  I found that the treadmill does the same thing to my back and arms as the bike does, that is it turns them all on. They push my leg back thru the stepping motion and it wore the skin off my knee. Guess no more treadmill until it heals.

Thur Sept 13th: We had accepted an invitation to Eric Clifford’s and Robyn Heuther’s wedding on Friday Sept 14^th. Eric is the son of my longtime friend, John Clifford. I remember when the boys were living with their Dad and Eric was about 8 or 9, he would sing Beatle songs to me whenever I called.

This was the day for making the list of everything we needed for a night out as the wedding was on Friday night in Toronto. Since I couldn’t/wouldn’t miss PT at 10 on Friday everything had to be packed and ready to go on Thursday night.

Fri Sept 14^th:   Eric and Robyn are two of the most adventurous people I know so it was fitting the first overnight excursion would be to their wedding. All the stuff actually fit in the car that is, the wheelchair, two suitcase, and you know a commode, suppositories, drugs, condoms, the CPAP machine, the kind of ‘stuff’ everyone takes to a wedding. We were a little leeryat first about going andthe questions remained: Would I be able to get in and out of the bed? Could I sleep in a normal bed? Would the commode fit thru the bathroom door? Would it fit over the toilet? Would we have to use the potty? The hotel, Days Inn in the Beaches said they had a handicapped room which turned out to be just bars on the walls in the bathtub.

We arrived at the hotel at about 3:30 after a wet drive; traffic wasn’t too bad as everyone sloweddown as visibility was poor from the truck spray. Only got stopped in traffic a couple of times. The hotel was home base for all the wedding guests, John and Roy helped us get all the stuff into the room. The wedding service was at 6:30 so we had to be ready to leave by 5:00. Since the bars in bathtub weren’t too useful, Darcy had to give me a sponge bath.

Just hope everyone appreciates the work that Darcy did to get meto Toronto and getting me ready for the wedding. Giving me sponge baths, putting my pants on, putting the shirt on and the suit jacket. We found a new method of getting pants on. I described previously how I got dressed by rolling side to side. Well, the bed was too soft and there were no bars to help me roll. Darcy couldn’t roll me over and pull the pants on at the same time. We devised a new method. I sat at the end of the bed and Darcy put my underwear and pants over my feet. I grabbed the handle of the commode and stood up and Darcy was able to pull up the underwear and pants. Note, the pants were borrowed as it seems my waist is no longer the svelte 33/34 inches which it had been since high school but ‘my George’ has now blossomed to 38 inches….yikes…it’s diet time but I’ll start after the wedding.

The wedding was in an 1848 School House in downtown Toronto about 15 minutes from the hotel. I had a front row seat. A great ceremony with a lot of laughs and after the service everyone moved to an adjoining room for some drinks before dinner. Yes, I had some wine and my first mouthful of wine in over a year was with John.  Darcy actually allowed me 3 mouths full of wine and at dinner, she put the wine glass just out of reach. I toasted with water.

Everyone was very helpful but Darcy likes to be independent and pushes me around, in the wheelchair that is. She wants to make sure that she can handle me when thereare not a lot of friends around to assist,

Eric and Robyn did a lot of work setting up the tables. Our table consisted of two a cyclists, go figure, Linda Clifford’s parent, whom we know, JerryAnn, the Groom’s Aunt/John’s sister and as well as Aunt Gene,who was 88 and is planning on making it to 90 but I figure she’ll make it the 12 years to 100. She had some interesting stories as she had worked for Bomber Command during the war and drove the crews from the barracks to their planes. She said it was very difficult as life expectancy of the crews wasvery short and in particular for the tail gunners.Crews would be driven to their planes and many times she’d go to pick them up and they weren’t there. There was a 44% death rate for Bomber Command.She had many interesting stories to tell. The evening went very well with the speeches being the right length. The meal was great and there was a nice touch as Eric had proposed to Robyn at an ice cream stand and dessert was chocolate ice cream from the stand…it was yummy.

We left at 11:00, way past my bedtime and bowel care and Roy led the way back to the hotel. Darcy started to worry once we got into the room when the bag containing the pills, the suppositories, the condoms and the night bag seemed to have disappeared. After a few minutes of frantic searching the bag was found under a jacket on the floor. It was time to transfer from the chair to the bed and then skooch to the middle of the bed. The bed was so soft I couldn’t skooch. I stood up and Darcy put the slider board under my buttand I was able to move to the right position in the middle of the bed, roll over and get the ‘silver bullet’. Transferring to the commode was interesting but I was able to grab the handles of the wheelchair, stand and pivot to sit down on the commode.All went well as the commode fit over the toilet….and…this was the first time I slept with Darcy in over a year.

Sat Sept 15^th: Slept well and was awake by 8:00, loaded the car and then off to Eric’s condo for a continental breakfast in the party room. Then it was time for the drive home and the Gardiner was closed. It was up the DVP to 401 which appeared very busy so we continued north to the 407 which was smooth sailing to Hamilton. In the past I’ve had problems sitting in the car for more than ½ hour but the butt was no problem for more than 2 hours, hopefully it is some muscle coming back and not a layer of adipose tissue that is providing the comfort.

Sun Sept 16^th:Pretty much a rest day.

Mon Sept 17^th: An interesting morning, probably too much info for most of you but in the shower we noticed I had a bit of diarrhea and was immediately moved over the toilet and had some more ‘movements’ and then got dressed, had breakfast and got undressed as more ‘movements’ were coming and back in the commode and over the toilet again. Didn’t know if this was going to be an all-day thing or not. Robert and the Rocket were coming at 9:45 to take me to Parkwood. We called and cancelled then as mentioned didn’t know if it was all day or not. They must think we don’t want them to take me as this was the second we cancelled them but I don’t think they would have wanted me in this condition.  We decided at about 9:30 we would risk going to Parkwood but to be safe, Darcy put a pair of Depends on me…they are quite comfortable actually. I didn’t really need them but they were there just in case.

PT was good, at the standing table for ½ hour then some hamstring stretches and trunk twisting. Laura got me to stand and pivot to get into my chair. Seems I have been doing it all wrong, I should be standing up tall, shift my weight to my right leg, move the left, stand tall again, move the weight to my left leg, move the right leg and repeat enough times to pivot far enough to sit down. Just need practice

Tues Sept 18^th:    A rest day, think I am still tired from the weekend and from Monday’s workouts.

Wed Sept 19^th:  In OT, Jody did a lot of work on my left arm and worked my back. PT, did prone lying, some stretching and sit to stand. Was able to shift from right to left and back again, several times. Was able to put weight on right leg and move the left foot, not far but nonetheless the foot moved…yeehaw.

At home I really had the hungries…just want to eat anything, but I patted‘my George’, and settled for a couple of pieces of crusty Italian bread, I wanted more but don’t get any as I patted‘my George’ once again.

Thurs Sept 20^th:A lazy day, my back was very stiff but I didn’t take pain meds and just put up with it.

Visit to the chiropractor and had 12 electrodes attached to my back and left arm. It seems to loosen up my back.

Fri Sept 21^st:   My thermostat is broken as different parts of my body will get cold. I can have warm feet and cold hands or visa-versa or one foot will be cold and the other warm, my leg will be warm and Darcy will find a cold spot on it. The biggest problem is that for the most part I can’t tell if I’m cold or hot. I can tell if my right hand is cold by touching it to my face or I know it’s cold if it gets very stiff.

Emily, does my therapy onFridays but when I arrived got there Emily had called in sick. I was going to leave but Janelle and Shannon said they could squeeze me in. Stood at the standing table for 1\2 hour and on the mat for another hour. Instead of going home, I got 11/2 hours of therapy. Shannon was trying to get me to move my left arm and straighten it without turning on the rest of my body. Her instructions were that I don’t need to tighten my stomach to straighten my arm…that is how badly I am wired now. As mentioned before my left side is weak and I must not let it collapse when I move. Got into standing and stoodwith no assistance. I was up for several minutes, so long that my legs got tired. When I sat down my legs just gave out half way down. I was able to shift my weight from one foot to the other. When shifting to the left, must be conscious that the left side doesn’t collapse….all in all a good day.

Another great massage by Jeanie in the afternoon and…coffee with the guys!

Sat Sept 22^nd:Felt a little down, just no energy and stayed in bed most of the afternoon. Karen came over with the boys and that got me off my butt. Did ½ hour of light spinning on the bike.

How am I Feeling?On the way to Toronto it was raining and as mentioned the spray from the trucks made it difficult for Darcy to see. We took our time and everyone else slowed down as well. We got stopped in traffic as per usual on the QEW. In the past, I would have had a panic attack. It was so bad that at times I’d stop the car and pace up and down and try to get off the road at the next exit. Several times when working I’d have to attend meetings or conferences in Toronto, but I’d have an attack and turn around and go back to the office. Try explaining that to the boss. To miss the traffic I’d leave at 4 AM and have breakfast in Toronto. I had absolutely no problem this time, not even a twinge of an attack. I think Darcy kept waiting for it to happen. In the past I may have turned down the invitation for fear of Toronto  traffic.

Looking at Eric’s and Robyn’s yearlongback packing itinerary, (Note: the tables for dinner were named after the countries they had visited) I now realize my mental illness caused me to be a homeboy…wow did I miss a lot.Hmmmm…but I guess there is still time to catch up. Although riding solo at 3 AM under the stars seemed pretty good at the time. Jeez, now I’ll have to catch up and probably Australia will be the first stop. We also know  that we can go to hotels now so I think our next stop will be a weekend in Collingwood.

Thanks for listening….

A Great Week or Two

A Great Week or Two

Mon Aug 27^th:   PT in the morning and Laura was back from holidays. Did some sitting, keeping my posture and then sit to stand several times. If I remember to put my nose over my toes, and that is way over the toes with head up it is relatively easy to stand.Yah I know with my nose I don’t have to move too far…yuk…yuk! Hard to think about keeping the bum tight and my trunk relaxed. Did some prone…on my tummy…lying and Laura mentioned that I need to do it at home.I have the face toilet so I’ll get Yonna to flip me over. 

Saw the chiropractor, in Simcoe to see if he could loosen up my back. I have been seeing him since my Rugby days in the late 70’s. I was able to get from my chair to the table and sit on the table. He hooked me up to the Interferential Machine by attaching 8 suction cups to my back and turned up the juice and left me there for 20 minutes. If you want to find out more about interferentialtherapy, see WikipediaInterferential Therapy for an explanation. Click here: http://en.wikipedia.org/wiki/Interferential_Therapy

I was hoping I might be able to get on my tummy and he could crack, oops manipulate my back, but couldn’t get there. Have another visit on Thursday. We’ll see what I am like tomorrow. Upper back between the shoulder blades feels a little more relaxed, but the lower back is still tight, well…very tight in fact and feels like a block of wood. He mentioned that it would take a couple of days to work.

Tues Aug 28^th:    The back was very sore when I woke up this morning, tight all over and painful lower back. Usually I need help sitting up to get in the commode to go for a shower, oh yes the commode has dual purposes. The PSW has to help me into a sitting and I skouch to get into the chair. Usually by the time I get up after the shower and dressed I can sit up by myself. This morning I couldn’t.

Yonna came over at 9:00 and I mentioned to her that Laura wanted me on my tummy which is good for my hips, tummy and back. The bed is very narrow and I had to get over on the left side, lying on my right side. To get me over Yonna picked me up and moved me over as I had trouble skouching over, I told you she is strong. Once on my side it was time get on my tummy. Darcy put the face toilet down and in I went, but it wasn’t quite positioned properly and I was resting on my throat, finally after a couple of repositionings, I was able to stay prone for about 20 minutes. It felt good but the back still hurts, guess its back on the pain pills.

Spent the afternoon writing the blog, yes my typing is that slow.

Wed Aug 29^th: Is the day the stars were aligned, perhaps the planets as well. We leave for London at about 9:45 and I was sitting at the computerand the dog went nuts as usual when the mail is delivered. Darcy gave me a letter from an old friend about a donation from someone I have never met. In the letter was a sizable donation, I just about fell off the chair when I saw the check, it was that’sizable’. Left for Parkwood all smiles and ‘visions of sugar-plums’ danced in my head. We were thinking that we could now get the patio door installed and a deck so I could get out the back door and into the back yard.

The physio had told me that I’d be going on the treadmill but first on my tummy for about ½ hourto loosen me up. They put me in a sling and took me to the treadmill. There are some pictures of me in the sling in previous blogs. I did some standing with full weight on my legs asthey can lower me onto the treadmill with 0 to 100% of my body weight. They asked if I wanted the treadmill turned on...well of course I did. It takes 4physios to get my legs moving, oneon each leg as they move my legs through the walking motion, one in front running the controls and one behind keeping me steady.All I had to do was think about keeping my arms loose. I walked for 3 minutes. After the session Janelle mentioned the Locomotor Training Program, which is 4x90 minute sessions per week for 11 weeks and includes 1 hour on the treadmill every session. Even though I won’t be moving my legs the brain will create the pathways from my brain to my legs which will assist in walking.Click here to see how locomotor training works:   http://www.christopherreeve.org/site/c.ddJFKRNoFiG/b.5399935/k.E273/How_Locomotor_Training_works.htm

I am so excited I can’t sit still!

The kicker is that the program is a fee for service program. As mentioned it takes 4 people to have one person on the treadmill, the participant has to pay for the physios and the use of the equipment. The sizable donation will go a long way in covering the fee.

Darcy had purchased a new mattress with a ½ box spring with the hope I would be able to get into the bed. We tried it. The bed is a poster bed and I used the post to help me stand. The bed is about 6 inches higher than my chair and I stood up pivoted and sat on the bed, slide to the middle and pulled my legs in. Now to get off, sat up skouched to the post and Darcy moved the chair into place or at least I thought it was in place and jumped on the chair…remember I am still pumped from the morning events. Well Darcy didn’t have the chair quite in position and I landed with my left leg a little on the chair and my right butt on the box spring and I couldn’t get up even with Darcy helping. The saving grace was, a posture board under the mattress that allowed the mattress to slide so I could land on the box spring. I was relatively comfortable otherwise I would have been on the floor. Darcy called Yonna, she wasn’t home. She called the Sarge and he said he’d be right over. He got me up easily and we had a good laugh.

At bedtime, we remembered it was our 39^thanniversary…hmmm...even she forgot. We had a laugh about that too.

Thur Aug 30^th:Yonna got me face down on the new mattress in the bedroom but it didn’t work all that well. I could only stay prone for a few minutes. Rolled over and got some good stretches on my hamstrings.

 Saw the chiropractor again and he put the pads on my back and thighs and calf. He asked how I hurt myself and who did my surgery? I ‘splained’ the whole thing. He belongs to a group that includes Dr Fehlings, my surgeon and about 100 neurosurgeons some physios and one chiropractor…small world. He says the interferential therapy he is giving me, will assist with the locomotortraining in creating pathways to my legs.

Dave Young, Director Environmental Health for the Waterloo Region, came for a visit.I told him about the donation which was a Segway for him to give me 2 cheques, one from the Association of Supervisors of Public Health Inspectors of Ontario and one from the Managers across the province. I would like to thank the ASPHIO for their generous donation and the supervisors for theirs. The money came at the right time to help defer some costs of the locomotor program

Fri Aug 31^st:   PT again with Emily and stood at the standing table for ½ hour and did some quad and hamstring stretches. I was standing across from my former roommate. The difference now is, he walks to his next station and I go in my chair…that will change!Still excited about Wednesdayand Thursday.Spoke to the anonymous donor, and thanked him for his generosity and he said that I am an inspiration to others which is a little scary. I’ll talk about that in ‘How I am Feeling.’ Got a note from Tour de Norfolk that they had a donation as well. They donated the entry fee from all the Silver Spokes Cycling Club members who participated and then added some. 

Had coffee this afternoon with the gang at The Ambrosia House. They stayed open for us as they were going to close early for the long weekend. They let us stay while they cleaned up so if you are looking for a good deli, check out Ambrosia House.

Sat Sept 1^st: A rest day for the most part. Did some standing before bed and did knee bends which felt good.

Sun Sept 2^nd:Went to Ancaster to meet with some of the cyclist doing a 4 hour ride in the hills around Ancaster. One of the riders had a little problem, i.e. too many hills.They had planned to be back at 2 but didn’t arrive ‘til 3:30. Congrats to Logan a 14 year old who completed the ride which was up and down the escarpment a few times with at least 1000 meters of climbing.

Mon Sept 3^rd:  No therapy today….grrrr. Did manage to do some squats, 5 sets of 10 and then after supper some more sets and just stood in front of my chairfor a few minutes. Must get the quads built up. I still pull myself up which is not a good thing but I figure if I get the quads stronger I won’t need to pull…it’s a catch 22.Did some morebefore bed, another 3 sets of 10 and some stands, bum tucked, chin in, shoulders back head up, belly button to backbone.

Tues Sept 4^th:Yonna and Grandpa Bob took me to the indoor pool as the lift was repaired. The water was about 85 degrees and felt good. Floated around for ½ hour which helps relax my back and arms with constant reminders to relax my neck and traps.Yonna stretched the hip flexors and hamstrings and Grandpa working on my left arm. Then it was time for standing. Took the float belt off and put my feet on the bottom. Since I have been standing at home I found it more difficult to stand in the pool as the buoyancy prevented me from shifting my weight from left to right foot. Also when I tucked my butt in I’d start to fall backwards and since my left side is weaker it starts to cave in. We tried some walking but I wasn’t able to do it properly and we switched to squats. We took into consideration that…’practice makes perfect, so be careful what you practice!’ Squats worked well as I was able to do several sets of 10 on the left leg and more on the right that’s where the buoyancy helps.

Wed Sept 5^th: PT with Laura and did the usual stuff, posture, standing and sitting and getting my legs into bed. Darcy spoke to Shannon, who is the coordinator of the LocomotorTraining and it seems it will take me a while to get in and may not happen until late October…be patient Glen. Laura’s plan for Monday is to get me on the treadmill again, looking forward to that.

Another great massage from Jeanie. Had to apologize as I missed an appointment with her last Friday.

Thur Sept 6:Yonna took me to the pool today. Neither Grandpa nor the Sargewere available. We did quite well actually. While I was floating on my back and hanging on to the side of the pool, Yonna was stretching my legs. Found out something interesting while floating on my back, Yonna told me to get my hips up and my belly (I call it my George) came out of the water and my insy belly button actually holds water which it has never done before.

I stood with me back against the wall and tried to put my arms on the pool edge, I couldn’t get the left arm up and with only my right arm up I rotated too much. Did some standing on each leg but the left side is weak and it collapses, and Yonna scared me. I am standing in water up to my chest with no flotation device on and she backed away and left me standing alone…yikes! She was close enough that had I fallen she would have been there….but it sure makes you stand up.

The next trick was moving along the side of the pool side stepping to deeper water as we wanted to see if I could float vertical with a float on…I can. I started kicking but the left leg wasn’t working all that well as I can’t lift my knee up very high. Yonna picked up my leg just about to my chin. After she did it a couple of times I was then able to lift my knee higher and even get my foot up.

Fri Sept 7^th:  Had PT with Laura and they had me prone lying and then sit to stand. My trunk and back were all acting as one big lump. They spent some time trying to loosen it up. The practice standing that we’ve been doing seems to be paying off as they were quite pleased with the way I got up and was able to balance.

Sat Sept 9:  No therapy Saturday. Was going to go to Karate class but I can’t go out in the rain with the electric chair. My back is very tight.  A lazy day watching the US Open Tennis Tournament and some NCAA football. Did some standing and squats before bed.

How am I Feeling?

One word….GREAT…no…grateful or that should be very grateful, thankful and very humbled by the support! On Wednesday, as mentioned in a matter of 2.5 hours I received a sizable donation from an anonymous donor that would help pay for the Locomotor Program. On Thursday, received donations from ASPHIO andPublic Health Managers, on Friday a donation from the Tour de Norfolk to go with donations from Martial Arts Canada Karate Club and from the Harlequins Rugby Club it pretty much covers the cost of the program….thankful, grateful,humbled!

Several people have said,I aman inspiration, just hope I am able to inspire someonewith an SCI or a stroke patientto get off their butts or get someone to stop smoking, eh Jimmy?Or get someone suffering from anxiety or panic attacks or other mental illness to get some help. Then I got this fortune that said, ‘Your influence has a profound impact on others.’ So it must be true…LOL.Just can’t wait to get into the Locomotor Training Program but it won’t happen until late October as there is a lot of paper work etc. to set it up, but at least it is in the works.

My legs are getting stronger and now the hope is that all the wiring is there to get them working once the brain figures out which wires go where.Doing standing at Parkwood and at home most nights helps a lot. Not riding the bike as much because it really tightens up my trunk and arms. Perhaps locomotor training will resolve that. Still need to get the heart rate up and the bike does that.

Oh yes I weighed myself on Labour Day as I can now stand on the scales. I weighed 189….yikes… that’s 30 pounds more than I weighed when I left Toronto. Must be Darcy’s cooking. They say heavier people in my condition have better outcomes…here’s hopin’! Guess there will be no more Cozy Shack Tapioca Pudding for desert and no more ice cream in bed. Good thing I will be starting the treadmill program, which should wear some pounds off. A good weight is 170 to 175 as that was what they wanted me to weigh when I was in Parkwood or 180 max.

Thanks for listening….

It's been a Year

Well I guess I’ll keep this format for a while…

Sunday Aug 12^th:A rest day, for the most part. Spent most of the afternoon writing the blog, takes a little while to type, I use the Columbus system, first you discover the key then you land on it. Watched the closing ceremonies…the Brits did a great job. Did the usual routine in bed…that is exercise routine!

Monday Aug 13^th: PT at  11:00 had me standing and I found it a little confusing as there was a Physio, a Physio Assistant and 4 students with most giving me direction…relax your hand, chest up, relax shoulders, tighten the gluts, tighten your left quad, straighten your left leg, put weight on your left leg etc.etc. Just a little confusing for the ol’ brain that is trying to think the signals through to the right parts. Don’t get me wrong the Physio is fantastic.  Felt very strange after PT, body is all tingly but, missed noon meds perhaps that was it.Don’t even want to go on the bike as it would tighten me up even more.

Tuesday Aug 14^th:Good session with Yonna and Grandpa worked left arm and doing sit-ups and standing at the commode. Don’t get quite as straight as at PT as there aren’t enough people to keep my legs straight, bum tight, but I try.

Did ½ hour on the bike in the afternoon, first time at tension of 12 watched and the legs went around okay.

Wednesday Aug 15^th: No physio as Laura was away, the nerve of her taking vacation, only had Occupational Therapy. Way back when, I signed up for 4 studies and one was the GRASP Study and it is to determine if the tool can predict how well hands will work after a SCI. I’ve done it at 3, 6, 9 months and 1 year after my injury…yikes the anniversary is coming up. The test is very simple, pouring water from a bottle into a jar, taking lids off 2 jars, putting a key in a lock and turning it, putting coins through a slot, screwing nuts on threads from ½ inch, 3/8 inch ¼ inch, 3/16 inch and then moving 9 small pegs from one side of a board to the other. I did better with the right than the last time but lefty still can’t do any of the tasks.

Still felt crappy, did only 15 minutes on the bike and couldn’t spin and the RPMs were way down. Really getting into the Curiosity Rover on Mars…absolutely amazing…I even opened a twitter account to get tweets from the rover. Interesting the conspiracy groups are already seeing UFOs in the pictures being sent back. It is going to be an interesting 2 years as Curiosity looks for past life on Mars.

Thursday Aug 16^th:Went to Cultures for coffee with Darcy then to the Optometrist, Jonathon Arnel to get my glasses fixed. Then coffee in the afternoon with the guys. My trunk was really tight and the bike tightens it up more so I had an easy day.

Friday Aug 17^th:  Had PT with Emily who I thought was a student but she is permanent fulltime PTA. Laura, was still on vacation and left instructions for Emily. She did very well and to boot she is from Tillsonburg and Yonna taught her in Grade 7 PhysEd. Felt great today came home and did 2x15 minutes on the bike and matched my best times. Guess it is just like everything, all days are good, some are just better than others, the legs and body just felt tight and tingly. The OT said it could be some nerves coming back to life…hope so.

Saturday Aug 18^th:The Karate Club, Martial Arts Canada had summer camp where students get some seminars on Mai Thai kick boxing, Judo and Kubudo (weapons-Bo, Sai, Tonfa). The participants were broken into five teams and competed in ‘gladiator games’, a quad pull and some mind games. One accident occurred in the Judo seminar when Byron got his foot caught and ‘snapped’ his knee and broke a bone in his ankle. He will need Surgery to bolt the bones back together. Wish Byron a speedy recovery.

There was a fundraiser, an anonymous person donated a treadmill, and Minuteman Press in London printed the tickets free of charge. The tickets were distributed to the Karate Club members and the Silver Spokes Cycling Club.As mentioned on FaceBook thank you to all the sellers and buyers the $1209 will be used to replace the patio doors so I’ll be able to get into the back yard.

Some friends that I played Rugby with a way back when in Brantford dropped into see me. The surprise was Russ Cairns, a Kiwi who was on a world tour in the 70’s and stopped in Brantford played some Rugby and stayed for about 12 years. For those who don’t know, rugby in New Zealand is like hockey here. The Harlequins Rugby Club had the Annual George Jones Memorial Golf Tournament and they also did some fundraising and I got a cheque for 300 bucks that will go towards the door. Thank you Quins! Oh yes, Russ mentioned that he still has a picture of my moon.

Sunday Aug 19^th:A rest day. I hope all this tingly legs and body is nerves coming back to life. Don’t know if I should be taking pain meds or not. As mentioned before I dropped the hydromorphone from 15 a day down to 9 mg per day perhaps I should put it back up. I see the Physiatrist, Dr Potter in September; perhaps he can shed some light on this condition.

Monday Aug 20^th:This is the anniversary of the fall, I’ll talk about that in How I Feel

PT with Janelle…did side lying with a bolster under my right side…had my left arm straight, Barry worked my left leg, a deep massage in my IT band…felt good when he stopped…need to break up the facia holding the muscles together…body still working as a block but the brain is ‘starting’ to differentiate the difference between my shoulders and my legs…my traps are big because I turn them on for everything I do

Tuesday Aug 21^st:  Yonna came over and did her thing, stretching and getting me standing. Trying to get weight on left leg. Legs feel tingly as mentioned several times …no bike. Perhaps the tingly is the new norm.

Wednesday Aug 22^nd:   Started off with a session in OT that loosened up my left arm which I really needed then to PT where they re-enforced the need for me to sit up straight 24-7. They never want to see me with my head down and my back not straight, must keep my chest up all the time… I’m trying, sitting here typing.  They also want my left arm away from my body so the brain gets the idea that my arm is actually an appendage and separate from the body. It is a lot of work trying to sit up straight all the time when you must think about every move and keep checking to make sure the arm hasnot  moved back to its original position beside my body.

Met with the psychiatrist today and everything seems to be going ok. She says I can start weaning off the sleeping pills. I take 15 mg of zopiclone (Imovane) and I am going to cut it back to 10 mg for a week or 2 and see what happens. She also mentioned that I shouldn’t be in ahurry to get off the pain meds as pain may lead to depression and I don’t that to happen. It’s back to 9 mg of hydromophone in the morning and 6 mg at night…don’t want anything to do with depression.

Thursday Aug 23^rd:Yonna stretched my hammies and then I stood up without using my hand to pull myself up. I managed to stand by just using my legs and was able to balance without holding onto the chair…yeehaw….then I was able to stand for almost 2 minutes without any support and then sat down with no arm support…yeehaw again. It was by no means a perfect stand, the left knee was still bent, left heel wasn’t on the floor and the bum was sticking out a bit…the good things were my back was a little arched and my gluts, both left and right were turned on and I was standing unassisted…wooo hooo. Hey all this and it wasn’t even noon yet. I haven’t been able to repeat it, but I keep trying. Told the girls and they immediately put it on FaceBook. So much for old news.

Friday Aug 24^th:Grandpa Bob and the Sarge drove me down to Pt. Rowan for a coffee with the guys from the cycling club. My friend Etienne was there…he did the same thing I did on the same trail about 150 yards from where I fell. He was looking good and is walking with a cane and was able to walk into the coffee shop on his own. Thanks to Ken for bringing him down.

Saturday Aug 25^th:Went to my first Karate class in over a year. Just sat and watched as Sensei Linda put the class through their paces. I’d like to teach but I’ve always taught by leading, it will be a little difficult not to lead by example…guess I’ll have to figure that out. The inspiration is that Frank, 78 years old is still taking Karate. It seems that he has a little trouble remember his Kata and self-defenses and gets a little frustrated, but who cares…and then there is Godelieve who at 79, still rides with the cycling club.

How am I feeling?

A good feeling was standing unassisted, which I haven’t been able to repeat, close but not quite. Another good feeling was standing at PT, when Barry, a hard-assed PTA said ‘good job’ when I stood up. Ya know it’s hard not bonding with the OTs and the PTs as they do so much for you, then you remember it’s their job…but what the hell, I’m going to bond anyway!

First anniversary of the crash on Aug 20^th…it’s seems a very short time ago yet, it seems very remote…things I remember the most…the 2 hours spent on the trail preparing to stay all night…being found…8 hours on a spine board…being in ICU for 5 days…then 20 more in acute care…the move to Parkwood…most of all I remember the support from friends…and how Darcy, Meghan and Kelly were always there…all my friends who came to see me…and have kept in touch…writing this blog…little did I know how therapeutic it would be...it seemed when I a first started writing it was a connection to the ‘outside’ world and probably said some silly things…going into depression...coming out of it…trying to figure out how I got there in the first place.

There are friends, whom I have not met that became very supportive, Marj who helped me through the bad time and JerryAnn who wrote notes about the blog and Meghan’s and Kelly’s notes to name a couple. Not going to start naming more names as the list would be 10 pages long. Then there was the fundraising by Martial Arts Canada, The Harlequins Rugby Club, Tour de Norfolk, Silver Spokes Cycling Club, several individuals and most recently the Karate Club with the draw on a treadmill that was donated anonymously and thanks to the printer…Minuteman Printing in London…who did the tickets for nothing, and Sensei John who put it all together…humbling indeed!

Meghan and Kelly probably said it best on Facebook on Aug 20^th.

copied from Facebook:

One Year ago today, my dad was riding his bike, as he loves to do, when something unimaginable happened.  He fell of his bike. A stick got caught in his spoke and stopped him in dead in his tracks, he flew over his handle bars and landed on his head, a stick, so small, yet life changing…. 

He lay on the trail unable to move.  My dad suffered a spinal cord injury. Instantly his life was changed, and so was our family’s.  But, in true Steen style, a style learned from my mom and dad both, we have marched through this crazy year, tough times and rough times, we have seen trial upon trial, only to see that perseverance and dedication really, truly pays off. 

Good things don’t come easy, progress doesn’t come easy.  My dad has worked his a$$ off, every single day.  He gets up and keeps on getting up when most would say screw it, and when he felt like saying screw it because there were some tough days, really tough days, my mom was there saying don’t you dare… you get up and get going, and when she felt like saying screw it, friends were there saying don’t you dare…keep going.  And although we are only a year into this long journey, we have only just begun; learning, growing, and becoming stronger. Day by day, inch, by inch.  Dad remember

 

because after this year you have turned all of those problems into opportunities, opportunities to grow, to teach, to adapt, and to learn.   That’s what you always taught me, So make sure you remember that.

This past year was a year where I learned how important it is to have good friends, because my dad has some pretty amazing friends.  And all I can say is THANK YOU, to everyone!

   

                           

                                               Keep growing dad,

                                               And we will ALL

                                               Grow with you.

Love you, Mom, Dad, and Kelly.

~Meghan Steen                                               

                                           

I’d like to say to Marj, stay strong as you possibly can, thinking about you always. 

Another Two Weeks

Another 2 weeks:

Monday July 30^th PT this AM worked left arm while in the standing table, stayed up for 20 minutes.   Worked on opening my left hand…they say the movement is there to initiate the finger straightening and moving the wrist back so it seems there is some nerve impulse getting thru. Meghan makes fun of me when I write the ‘problem is’, but the problem is as mentioned previously my knee bone is attached to my left arm bone. When I stand on my left leg my left arm, hand and fingers are so tight it is very difficult to open my fingers…they do work hard to get the fingers open, the wrist straight and the arm extended.

They are trying to arrange another time slot so I get 3 sessions per week. It would be 2 with the physio and 1 with a physio student, Monday, Wednesday Friday….yeehaw and a woooowhoooo

At home did some launches off the bed and the usual exercise routine and Dr Ho on the finger flexors, triceps and quads.

Tuesday July 31:  Yonna and Grandpa came over and they warmed up my leg and left arm did stretching on hamstrings and then I stood up several times. Can get from sitting to standing by myself the hard part is getting in the proper standing position…you know the drill bum in, chest out shoulders back and head up chin in.  Grandpa mentioned that there was some separation of left arm from left leg.

Have Dr. Ho on my forearm while typing this and the fingers are opening a third of the way and I close them and they open again don’t know why it is working today.

Taking a urine specimen to the Doc today and hopefully get some anti-b’s. Used norfloxicen the last two times, want something different this time. Would also like a sensitivity test done to see what anti-b will kill the little suckers.

On the bike for ½ hour and it tightened up my arms.

Wednesday Aug 1^st:  In PT did prone lying to prone standing…stretched legs wide apart, haven’t been that far apart for a long time a good stretch of the hip abductors or is it adductors well anyway a good groin stretch. Stood straight up for a minute from prone standing which is very hard on my tight hamstring and there is a little relief if they/I tuck my tail bone in and my butt under. They say I am getting better at standing and my arm is starting not to tighten up as much. I guess that is like Sir Winston Churchill’s statement about the war….’it is not even the beginning of the end. But it is, perhaps the end of the beginning’. Hmmmm….perhaps I shouldn’t be using Sir Winnie’s quotes in this blog.

Anti-b hasn’t kicked in yet, as my bladder is still burning and cloudy and burning pee.

Thursday Aug 2^nd: As mentioned the lift is still broken and they won’t have the part for another 2 weeks. The outdoor splash pool is like the beach, the water depth goes from zero to 4 feet. They have a small wheelchair and they wondered if I could transfer to it from my electric chair. I’d stand, by holding Yonna’s hands and they pull my chair out and push the little chair in…it worked. In case you don’t know The Sarge and I are always zinging each other. The Sarge took great delight in rolling me into the water very slowly as it rose to chest depth…yikes! Note the outdoor pool is several degrees cooler than the indoor pool. Once into the 3 foot depth they tie the float on and I float for about ½ hour with Yonna moving my legs to stretch the hamstrings, quads and hip muscles. It is then time to stand up in 3 foot water which isn’t very buoyant and off comes the float. I have found that standing in the pool is hard on my feet as I have no calluses left on them and my toe next to the big one rolls under. Yonna and The Sarge both say the pool bottom is smooth…well it isn’t to my prissy feet. I think I’ll look into some aqua shoes. Oh yes, we share the  pool with about 25 ladies doing aqua fit and they are very supportive and some come over at the end of class to give me some encouragement.

I think the anti-b is starting to work

Did ½ hour on the bike in the afternoon once finished I stretched the left arm by getting Darcy to open my hand and slide it on the handle bar and then I sit back and it straightens the arm out as it is very tight even though I did the chicken dance. Did 4 sets of 10 launches…had to pull with my arm very hard to get a foot off the saddle, oh yes, I am still on the bike then again I realized I was doing it wrong. To stand I must put my nose over my toes, keeping head and shoulders up…surprising what a difference it makes…almost stood up straight about 2/3 of the way up quite easily. I must remember that while sitting here typing, to bend from the waist and keep my head up and not be all hunched over the keyboard

Friday, Aug 3^rd:Coffee with the guys at 10 this morning, then another massage by Jeanie at 1. Then lying on my right side for 45 minutes, which stretches me a different way than lying on my back. Should actually sleep on my side for 4 hours and then go on my back, not going to happen as Darcy would have to get up and help me get on my back. Friday we were told that we would have 3 new people coming in on Friday, Saturday and Sunday. Being a long weekend and vacations, it is understandable they would be short staffed. However, no one showed up on Friday night so Darcy had to do my bowel care…oh joy oh bliss. We managed ok but Darcy hurt her back lifting my legs into the bed. The workers not only do bowel care they have been trained to do 8 exercises on my arm back and ribs so I missed the exercises, which I need.

Did 2 sessions on the bike, first one for 15 minutes, then 25 minutes. As Darcy says, I always overdo and 40 minutes was just a tad too long and really tightened up my arms and trunk.

Anti-b’s are working, pee is clear, not the kind of clear like when you drink too much beer…eh Marnie!  I mean not cloudy, no burning bladder, no burning pee and fewer muscle spasms.

Saturday, Aug 4:   Woke up very tight with lots of muscle tone everywhere, arms legs and back muscle spasms are back...not as bad but there. Hope it is the hard workout that caused it all and not the bladder infection acting up…still on anti-b’s ‘til Monday. Did a very light workout on the bike and still tightened up. No worker showed up at 8:15 as stated and no phone call to say they weren’t coming. Darcy had bowel care once again, sore back and all.

Sunday Aug 5^th:  Again too tight to do much. Didn’t ride the bike as it tightens me up more. Did some leg extensions and pelvic tilts, and lying on my side…pretty much a rest day.

A worker actually came in at 8:15 and did the bowel care and she had only been on the job for a week. She asked for direction and people tell me I am pretty good at giving direction, Darcy calls it being ‘bossy’. She did a fine job. The regular workers have been trained to do 8 exercises on my arm, back and ribs. The operative word is trained so no training, no exercises, even though I could walk them through it quite easily.

Monday Aug 6^th: Woke up looser or should that be less tight. Rode the bike for 40 minutes, 2 sessions, one for 25 minutes with a 3 minute cool down and an easy spin for15 minutes. I am really missing therapy and the exercises from the workers. A regular worker came in at 8. Note she usually does mornings and even though she had been trained several months ago I had to direct her through all the exercises…hmmm…why can’t I do that with new workers. I understand there are rules but there is the letter of the law and the spirit of the law. The supervisor of the agency says she is going to get more workers trained but she doesn’t know the exercises and I will have to train them all…what a waste of time and money when I could do training on their first visit…grrrrrr

Tuesday Aug 7^th:  In the splash pool with Grandpa Bob and Yonna. Did stretches for ½ hour with grandpa working on my arm and shoulder. Then off comes the float and I do squats by sitting down on Grandpa’s and Yonna’s knee and then stand up and hold it. Again, my feet are tender my feet hurt when I get up. I tend to twist as my right side is so much stronger than the left. Must work on standing straight.

Learned a new trick. As mentioned, Darcy hurt her back putting my feet into bed. She has to lift my legs from the floor and push them into the bed. I haven’t been able to lift my legs and swing them into the bed as my butt sinks into the bed. I had a brain wave that I could sit on my slider board that I use to slide in and out of the wheel chair. I sit on the board and can easily lift my legs and swivel my butt on the board and put my legs into the bed. It even gets me in the right position so I don’t have to slide up in the bed so my feet don’t touch the bedboard. The PSW’s appreciate it as well.

Wednesday Aug 8^th:  Wow got back to phyisio with a bang. Laura and Marion were working on my arm and posture and I mean head up shoulders back chest out, sit and stand tall, all the time…then we got into standing with 4 physios, one in front keeping my arm extended, one on my right making sure my leg was straight, one on the left stopping my left side from collapsing and keeping my leg straight as possible and my heel on the floor and one behind making sure my tail bone was tucked under and my gluts were on. When I stand, my right leg does all the work and the left goes along for the ride. If I put weight on my left leg the whole left side collapses, knee, and hip. They said I must do 8000 reps a day of putting weight through my left leg and tighten my left glut (bum). The work Yonna and I have been doing on stretching the hamstring is helping as I can get the knee straighter without pulling the hamstring i.e. no pain. They like my ‘stamina’ as I was able to go from sit to stand many times without a rest.

Darcy and I have a standing bet of 25 cents depending on whom is right. As physio wants me to stand and practice putting weight on my left leg I needed something to stand up to from the bed. I need to be on the bed as I can raise it up higher than a chair. Darcy suggested I use the handle bar on the commode. I said the commode was too light and wouldn’t work…she won the quarter. With a PSW standing beside the commode and Darcy sitting in it, I grab the handlebar, keeping my chest and head up, put my noes over my toes I stood up, 5 times. I was a little wobbly but managed to stay standing for a couple of minutes each time. Darcy doesn’t feel comfortable doing it alone as I wobble to the left and she is afraid I’ll fall….note I’m not afraid as if anything gives out I’ll just sit on the bed.

Thursday Aug 9^th:  No swimming pool as it was quite cool and raining. Yonna did lots of stretching of hamstrings and the hip flexors. Did some stands from the bed trying to tighten my butt and tuck tail bone under and putting weight through my left foot. Hard to keep gluts tight. Must get a leg press machine to work the legs and get the butt working. I was not so wobbly this time and my left side did not collapse when I put weight through it. Darcy now feels comfortable doing itby herself.

Friday Aug 10^th:  PT today as a replacement for the civic holiday…yeehaw. They had me standing for45 minutes at the standing table. They put some weights under my toes to lift them up that really stretched my hamstrings. I could only tolerate it for ½ hour.  Again trying to keep my legs straight and pressure on my knee, again my left arm bone is attached to my left knee bone and the ol’ left arm tightened up. They tried to get my fingers open and they did extend my arm with a lot of difficulty. Then they got me into side lying and stretched my quads i.e. bent my knee and pulled it back to stretch the quad and the hip flexors, feels good when they stop.

Came home and had another great massage from Jeanie and she commented on how much more flexible my ankle was.

I would be remiss if I didn’t thank the Tillsonburg Rec Department for all they did in getting me into the pool.

How am I feeling?

The long weekend was not good. It was too hot to go outside and there was no therapy for a week. Rode the bike but even with the air conditioner on, I was sweating a lot. Started to doubt what I am doing but the therapy on Wednesday got me over that hump. Being able to get my legs into bed is great and standing at the commode is fantastic.

I have stopped setting goals for when I am going to walk. I’ll keep doing what physio says and I’ll walk when they tell me I am ready. There is so much that has to happen before I get there. There is the whole balance thing and just picking a foot up with the weight entirely on the other foot must be learned all over. Then there is stepping. I know I was walking in the pool, don’t get me wrong, that was a great feeling but, two people plus the water were holding me up as I have no balance and I need to stand straight and shift my weight from one foot to the other all the time keeping my leg and butt muscles turned on. It’s tough to have the brain send the signals to the right spot at the right time, that’s the unknown learning variable which may take time…will take time.

Oh yes I watched a lot of the Olympics…yeehaw Canada…well done. Some great performances, Damian Warner in the decathlon and our only gold and the soccer team and last in women’s triathlon… and…and…and…and damn about the relay, rules must be followed…oops did I say that.

Thanks for listening….

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….

                                                 https://www.facebook.com/LASCIonline

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…..