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….