Aug 12 to Sept 1, 2013

Aug 12 to Sept 1, 2013

Sunday, the 11^th I did nothing in order to rest up for physio on Monday to see if the rest would make a difference. I was very tight but managed to walk 3 times around the gym…then I was really tight on Monday night and on Tuesday. Stephanie (physio) just stretched me out for the hour and then 10 minutes in the standing frame. After therapy it was home for lunch, pack and head off to Collingwood for Meghan’s Birthday BBQ. Kelly and Simon were already there and are staying ‘til Thursday. They had a ton of BBQ’d shishkabobs, Yum…Stayed at the Days Inn as they have a couple handicapped rooms which is basically a roll-in shower. Darcy loads the commode into the car and we have it for moving me in and out of the bathroom. The biggest problem is the carpet in the room is soft and the wheels of the wheelchair and the commode sink in and it is hard to roll them but we managed, with lots of grunts from Darcy!

On the way home we stopped at Sussman’s, a discount clothing store in Arthur. Darcy left me in the car parked on the street. She left me a urinal just in case the urge came over me, and it did. I had my long pants on due to the cold temperatures in Collingwood.  I dropped the urinal on the floor. Just so happens an oriental lady (that may not be the politically correct term, but you understand)  walks past and I asked her if she would get my urinal. She took one quick look in the car and continued walking. That’s when I looked down and saw that my tear-away pants were open and my bare leg was exposed from my thigh to my knee…yikes the perv strikes in Arthur…lmao!

Thinking about the muscles in my legs. I rested on a Sunday and did 10 sit to stands before bed. Monday was the big walk day and Tuesday was no walking and sitting in the car for 3 hours going to Collingwood and sitting in the wheelchair for another 3 hours. Sleeping in a ‘real’ bed is a bit different. I am accustomed to changing my bed angle several times during the night since I can’t move around. In a regular bed the position I get in is the position I stay in. Laid on 3 pillows propping my back and head up. At about 1:30 I woke up with a burny/achy  pain in my left hip and butt. Had to wake Darcy up to reposition me. Took 2 pillows away and I laid out flat on my back. That seemed to work and the ‘pain in the butt’ went away.

Having some strange things happening to me. I am definitely having autonomic disreflexia (AD) episodes which is: “a reaction of the autonomic (involuntary) nervous system to overstimulation. It is characterised by severe paroxysmal hypertension (episodic high blood pressure) associated with throbbing headaches, profuse sweating, nasal stuffiness, flushing of the skin above the level of the lesion, bradycardia, apprehension and anxiety, which is sometimes accompanied by cognitive impairment.^[2] The sympathetic discharge that occurs is usually in association with spinal cord injury (SCI) or disease (e.g. multiple sclerosis.” What does this mean? I just figured this out on Sunday. I had done a bike ride on the trainer and went to bed at my normal time. I was having trouble getting to sleep as I was tight everywhere. My neck was particularly sore and I couldn’t get it in the right position to alleviate it. I started sweating and got pins and needles everywhere. Didn’t get a headache but it really felt like a panic/anxiety attack. I called and woke Darcy up and asked her to take my blood pressure. It was high at 154/91 which is very high for me. It is usually 115-120/60-65. To alleviate AD the source of the pain needs to be removed. I had a big pee and I could feel the symptoms reducing while I was peeing. My stuffy nose cleared up, the pins and needles stopped and the pain in my neck went away. Seems I get some symptoms such as the stuffy nose and not the headaches. Also, nice to know that symptoms are similar to ‘anxiety attacks’ which means I wasn’t actually having a panic attack or at least that is my logic! My stuffy nose happens about a ½ hour after I bike and usually lasts for an hour but sometimes 2 or 3 hours. Found that if I lay in bed it goes away faster. Amazing how fast the ol’ mouth dries out when you breathe through it. Don’t envy those people with allergies who breathe through their months all the time. I have also found that the onset of the stuffy nose can be delayed and sometimes prevented if I move my legs. Don’t ask me why it works…it just does…most of the time!

Seems I have been having AD episodes all along and didn’t recognize them. I had one while sitting in the Drs. Office on the 19^th. The nurse took my blood pressure and it was 145/91, again high for me. Since AD is over stimulation of the involuntary nervous system, anything can cause it. The  Dr. is concerned about my hemorrhoids. Now here’s the story on them. Muscle tone also affects the muscles in my intestines and the lower part of my intestinal tract tightens up which means I must strain to poop. Straining causes swollen blood vessels in your butt i.e. hemorrhoids. The problem is not that I am constipated which would also cause the problem but the tight lower bowel is the problem. They cannot prevent the lower bowel getting tight as it would take too much medication and may cause the total loss of control and that is no good either. I take 120 mg per day of baclofen and only about 1.5 mg actually gets to my spinal cord. The next alternative is to have baclofen pump installed and pump it right into my spinal cord. They don’t usually do that until years down the road but if I need it Dr. Potter said he would get it installed. I am seriously thinking about it.

Tuesday and Wednesday the 20^th and 21^st were interesting days. Here we go more poop stories. Didn’t have a BM on Tuesday night and all day Wednesday I was a hurting puppy. As any pain can cause AD and I had several episodes on Wednesday. Darcy took my bloodpressure and it was elevated several times during the day. Elevated from  ~116/65 to 145/89. Not high enough to blow a gasket, not a real health risk but high enough to give me some symptoms: tingling, a bit of a head rush, sweating and the most aggravating thing, the stuffy nose. Don’t know if that is from elevated BP or my nerves just doing it. The vagus nerve is the one responsible for running my nose and a lot of other stuff in the face. It is a weird feeling when muscles in my neck face head and ears go numb. Feels like there is an elastic band around my face.

It gets a little frustrating when activity sets off the AD. Friday night (Aug 23) was a real bummer. I did a bike ride and then all the tightening started. My hemorrhoids were hurting so I was tingly and very tight all night long. Got Darcy up at 1 AM and did a trip out on the driveway…it was cool and helped a bit to relieve the anxiety. When my lower bowel is tight, I can’t fart and the gas builds up and causes pain and it becomes a vicious circle. If I strain to get the fart out that aggravates the hemorrhoids causing pain and making everything else tighter….grrrrr! Really don’t know what the solution is but need to find one very soon.  

Went into the pool with Darcy on Wednesday (Aug 28) and stayed in for over an hour. Prior going to the deep end we did some stretches and did some stepping up on the stairs in the pool. With the right foot on the step and a lot of help from my right arm I can almost straighten the right leg and almost get the body out of the water. Spent more than ½ hour in the deep end doing water walking and in general moving the legs in all direction.  This is the only place I can really get to stretch my legs apart.When walking in the pool I try to take bigger strides, which still aren’t very long but longer than I take on dry land. The water buoyancy keeps me on my toes…literally it keeps me on my toes which is very different from dry land walking. 

August 20 was the 2^nd anniversary of the crash. It seems so long ago but also seems like yesterday. I’ve come a long way from not being able to move very much to almost walking on my own. Again I need to qualify walking. I do take steps but very short ones only about 15 cm or so and I need a cane and someone hanging onto my belt in case I lose my balance. I can walk about 145 feet and my lower back tightens up and my left leg gets tired and I start to trip on my foot. Don’t get me wrong I am pleased with the walking I am doing, just need to do something about that damn sore back that is the show stopper on every walk….grrrrrr!

How am I Feeling?

 I may have figured out something. Another Catch 22. I missed 3 days of working out, no bike rides, no gym and no pool. My legs felt weak when I was in Collingwood. When able body people stop working out your legs still get a workout just walking, sitting standing etc. If I miss working out my legs do nothing and perhaps doing nothing for so long really does make them weak. My legs feel the strongest when I work them every day. I can see that in the training log…best distances are usually the 3^rd or 4^th day of riding. When working out in the gym I have the best walks after doing leg press. I think that I must think about lifting my toe all the time and when I haven’t used my legs for a while I forget to lift it up. That’s my diagnosis…

 

The frustrating part is no one can tell me want to do or what will happen or what will work. It’s all trial and error. As mentioned when I ride the trainer for 40 minutes my legs go tingly/burny, my nose plugs up and my ears start to ring.  As mentioned above I can sometimes alleviate the stuffy nose by moving my legs around and stretching. Also, getting into bed and relaxing seems to help as well. I know that by trial. They can’t tell me how much to do. I think, if things stay like this there will be no long trike rides. I don’t know if the length of time and severity of my tingly/burny legs and plugged nose is proportional to the time spent pedaling. Enquiring minds need to know...an experiment in progress.

I weighed myself again and the weight is…wait for it…is 205.6 pounds or 93.5 kg…yeehaw down from 230lbs/104.5 kg...yeehaw x 2…only another 15 lbs/6.8 kg to go. My George is getting smaller. Losing weight is very hard to do. I now empathize with those people who have a weight problem and are trying to lose some kg’s. It was so much easier when I could eat what I wanted and as much as I wanted and just burn it all off with no problem.

I was a little concerned that the number of laps I was able to walk during therapy has decreased from 4 down to 1 lap and sometimes only ½ or ¾ of a lap before my back tightens up and I need a rest. Stephanie pointed out that she and a student were doing lots of work when I was doing 4 laps and now it is just with Stephanie and I am doing most of the work. When I start the walks I take 7 or 8 fairly good steps before the hamstring gets tired. Stephanie has to make 2 or 3 saves in a lap as I tend to lean and lose balance going around corners. I lean to the right on each step to accommodate the hip-hike to take a step with the left.

Don’t know how it happened, but the 4 weeks Kelly and the 3 weeks Simon was here went by at light speed. It was good having Kelly around again…noisy but good…lol! Good to get to know Simon a little bit as well. Yup…he’s a good guy! Enjoyed hearing about deep sea spear fishing and seeing the videos of spearing 200 kg Dog Toothed Tuna. Looks like a lot of fun. Missing them already.

 

It appears that I am complaining a lot in the blog but according to Darcy I don’t complain about anything at home but writing about all the trials and tribulations is therapeutic, it gets it off my chest.

Really looking forward to going back into the Locomotor program for 22 sessions/5 weeks starting Sept 12^th . Had a great lunch with one of my old opps, former bosses, Dr. Doug who is here from BC visiting his Grand Kids. 

Thanks for listening….

July 22 to Aug 11, 2013

July 22 to Aug 11, 2013

It was great having Meghan down for a visit for a few days. She arrived on Tuesday, July 22 and left on the 25^th. Went for a ride with her on the trikes. Noticing a little glitch when I ride the trike. The headrest is now installed. It is not really a headrest as my neck actually rests on it. The problem being that when I flex the left leg it does not bend far enough so my neck comes off the headrest and ‘bangs’ back down on it with every pedal stroke. It is a…wait for it…a pain in the neck! 

Think I need the Cerna kids to break up the scar tissue in my knee like they did for Sensei Helene to increase the range. They say the range you have after a couple of months is what you end up with. I need about another 3 or 4 degrees, t’wil be a painful 3 or 4 degrees.

Getting up and walking more. Walked into the gym with Yonna and walked between all the equipment and walked out as well. Got to the pool and walked in to a standing ovation from all the ‘girls’. One of the girls said it even brought a tear to her eye…awwww!

On Thursday July 25^th, I explained to Stephanie that my left arm is getting weaker. I have trouble combing my hair in the morning. It gets a little better during the day but it is still weak and can’t do things I could do 3 months ago. I was able at one time run the palm of my hand over my head…can’t do that now. Stephanie is going to let me go back to lifting on the right arm. 

Meghan left on Friday and Myah was very happy to see her big dog leave. While Ashlu is here Myah is beside me at all times. Although, when somone comes to the door Myah starts barking which gets Ashlu going and he has a very loud bark, just what we need, more barking.

Darcy came into the pool with Yonna and I on Wednesday to get trained so she can take me to the pool when Yonna is away. Darcy she is short, 5’2” and eyes of blue and we stay close to the shallow end. Darcy took me to the pool by herself on Friday. It all went very well although Darcy stays a little further away from me than Yonna does…a little scarier! We did all the same workouts and stretches just didn’t get stretched quite as far. Darcy was able to manhandle me and get me back on the lift. She can’t pick me up and throw me around like Yonna does but she gets me in the right position on the lift nonetheless. After the pool I got on the trike and did 9.9 K. As usual I tighten up and my nose plugs up. I think that if I keep moving around when my nose is plugged up it starts to clear up…at least it happened once. 

Did some more K’s on the trainer and my knee was a little sore from being on the trike. Attended Bruce and Maggie’s ‘I Do’ party on Saturday. They got married on Valentine’s Day and had the party on July 26. It was good seeing all the karate guys and especially my ‘Dirt Belt Buddy’ Monica. We were Brown Belts together and graded to Black together. She was here on vacation from New Brunswick to be here for the I Do party. Had some problems at the party. I was a little chilly, well actually got very cold. I did have long pants on but it seems I needed a blanket as well. The whole body got very numb in particular my legs and started to feel very uncomfortable. Couldn’t move very well and I had to leave early. Perhaps that was a good thing as it rained just after we left. 

Disappointed as we were just about ready to start the performances…rugby performances that is. Whitney, Monica’s sister is a rugby player in New Brunswick and she was going to perform a ‘modern’ Rugby song and I was going to do a ‘golden oldie’. I had to leave just as Whitney was about to begin.

On Sunday, we went out to meet the cyclist who were having a breakfast break at Styles Restaurant in Delhi. My back was a little sore and Darcy mentioned that I was a bit grumpy. I did do 55 minutes on the trainer when I got home. Again Darcy tells me I am overdoing it. I guess she does have to put up with me when my nose clogs up or when I need a quick trip into the chair and out into the driveway. My philosophy is that you must continue to improve which requires pushing  the limits. This means staying on the bike or trike longer and doing more mileage, walking further, increasing the weight in the gym etc. When I got the trainer in June 2012, I was doing 6 K in 30 minutes and now I am doing 12.6 K in 40 minutes. A little improvement perhaps not enough. The factor keeping me from doing more is the tone of course. What I am finding now is that the tone is the worst right after the workout and it lasts about the same regardless of how long or how hard I work out. I think I had better clarify, tone is there all the time. But after a workout it is particularly intense and that is when I need to get out of the house almost like a panic attack but not quite the same. Must learn to deal with the intense tone as it always does decrease after a while...perhaps I don’t need the trips to the garage…just gotta learn to suck it up.

The week of the 28^th was different. As you have been informed I have a BM every night at around 8 o’clock. Well on Sunday night, I didn’t have one. Not a big deal you say…nobody has to go everyday. It seems I do. Missed Sunday and a bout of diarrhea in the morning after my shower. Put on Depends to go to Parkwood just in case there was an accident. Yonna and I headed off to Parkwood only to be turned back at Dorchester by an incident…no therapy. Got home, had lots of tone, didn’t feel hungry but force fed just to have something in my stomach. Then it was onto the can for almost an hour and I thought I got rid of all the bad stuff. Monday night almost a normal BM but diarrhea again in the morning and again no therapy. Once everything settled down Yonna came over for a stretch and we did some walking.  I walked out onto the patio and sat on a real chair. Can get down onto a chair but it is a little harder getting up. To stand up I must lean far forward until my butt starts lifting off the chair and then drive up with my legs. Even though everyone leans forward to stand for me it is scary when there is no-one in front of me or nothing in front of me. I feel like I am going to fall over. I got up with some assistance and walked into the house. I’d like to walk into a restaurant but I wouldn’t be able to slide the chair into the table.

Kelly got home on Wednesday at 2 AM and we all got up when she arrived, including the dog. So good to see her. It’s been almost 2 years. Her boyfriend Simon arrives on the 7^th. Looking forward to that. Although I won’t see him ‘til Saturday as they are going to Niagara Falls from the airport.

Back to therapy on Thursday. First time there in a week. Stephanie did her usual stretching and then it was off walking. Did 3 very good walks with the quad cane and also with a walking stick. I sometimes have trouble with the quad cane as I don’t always put all it’s 4 feet on the floor and it’s tippy. The walking stick is longer and my hand is higher and I don’t think I tighten up as much with the walking stick.

Darcy took me to the pool…yikes. I was a little concerned with Darcy getting me on the lift both from the chair and also getting on the chair the water. Happy to report both worked well. To get off the wheelchair, I held onto Darcy’s hands and she pulls off the lift chair and sat down…piece of cake! Getting on the lift chair in the water also worked well. Darcy was able to push my butt back far enough to stay on the chair. Hmmmmm…now I just have to train Darcy in the gym..lol! Oh yes, on Saturday I walked into Karate Class with the transfer belt and Darcy helping me when I am not paying attention to what my feet are doing.

How am I Feeling?

Getting excited about the walking as it seems to be progressing. I’m thinking they may be terminating the physio at Parkwood. Just a feeling I am getting from Stephanie. She asks where I want to be with the walking, which implies there is an end point to therapy, go figure, I’ve been there for about 18 month. I’d like to be able to walk with no assistance and get around with just a cane or maybe no cane would be nice.  I do not have much endurance yet for walking. I get tired quite quickly. I can walk for about 75 m and then I need a rest. Guess I need to practice more. Not used to having no endurance.

The tonal overflow as I keep harping on is the thing to overcome. Something I’ll just have to live with. Same thing every time. Over and above the tight back and ribs, about ½ hour after a workout my nose plugs up. It is strange and lasts for a couple of hours. I can feel all the muscles in my face tightening up and slowly all the sinuses start to close up just like an allergy and the nose shuts down and that’s a pretty big thing to have my nose stop working. The most aggravating is my mouth dries out from breathing through it and I must take little sips of water every couple of minutes. The benefits of working out far outweigh the side effects…so I should shut up about it and put up with it.

Well, I just got back from Karate Class on Saturday and after class I did a big walk around the hall. Felt good but I start to catch my left toe when the leg gets tired and it was time to stop.  After class we went to Tim’s for oatmeal and coffee. Note: Wish they would have had the oatmeal when I was doing Randonneuring rides…it would have hit the spot at 3 in the morning. Darcy had to do some shopping, at the beer store. While waiting in the car, I started to feel very strange. Muscles in my face, neck, ears and skull started to go numb. My chest and trunk tightened up and I felt nauseous. This feeling lasted for about an hour. Darcy even said I looked pale when she got back in the car.

 Guess maybe I can’t ignore the tone. Another wash has just come over me and everything tightened up again. Yikes I don’t like this very much. I need to belly breath and when I’m toned it is difficult to talk. When I inhale to get air to talk all the muscles tighten up so there is no muscle to exhale...and to talk. This is the worst the tone has been…hmmm…perhaps the rushes were caffeine related from drinking one cup at 8:30 and another at 11:00. Hopefully, it was the caffeine and not the walking that got me all messed up…we’ll check that out. The doctor also upped one of my meds that may be a factor as well.

The Randonneurs are getting ready to do a 1,200 K ride and I must admit I do miss the cycling!

Thanks for listening…

Jul 1 to July 21, 2012

Well here goes, writing a blog without jotting down any notes. This may bounce around a bit. Therapy has been going as usual…well, except for one day. More on that later. I attended a Brown and Black Belt grading at the Karate Club. They all did very well…makes my ol’ heart go ‘pitter patter’ watching them. Especially when a 55 year old Lady did some amazing stuff to get her Black Belt. That’s the end of my Sunday morning Karate Classes…hmmmm….time to trike ride? It has been a little too warm to go out on the trike, particularly with my broken thermostat. I have been doing more on the indoor training and last week rode 47 k indoors, I lie, 7 of that was outside.

Stephanie, my physio, had a vacation last week (July 8 to 12) and I only had one therapy session which accounts for the higher than usual bike mileage.  The tonal overflow is still happening after exercise but riding the bike on consecutive days didn’t seem to make it worse, well there was one day I did something stupid, now that I think about it. Last Thursday, July 16 my back was so sore when I woke up and I could hardly move. Virtually every move would put my lower left back into a spasm. At therapy I couldn’t do ‘sit to stands’ and definitely couldn’t walk. We did some stretching and then 20 minutes of hotpack on my back and then some acupuncture. Since I am not very good at going prone, I was lying on my side for the acupuncture. While lying there my entire body went tingly and I felt very strange. It passed when I sat up. Sitting up was no fun with the back spasming.  A wasted therapy session as there was no walking…grrrrrrrr! 

I do like to keep busy and here’s an example of the busiest day.  On Wednesday, there is no therapy. I go to the gym to lift weights with Yonna and Grandpa at 9:30. Hmmmm…good thing there is spell check…just spelled ‘weights’ as ‘waits’….lol! Yonna put on the transfer belt and I walked into the gym with my cane and Yonna making sure I didn’t fall over. Didn’t use the chair in the gym, walked between all equipment. Stay at the gym ‘til about 11. Head home to get the bathing suit on to get to the pool for a swim with Yonna at about 11:45. Say hi to my girlfriend Rosa at the pool. Yonna does a great job relaxing me in the water and stretching me out. Darcy was in the water as well she said it was training but I think she just wanted to cool down.  Yonna is going on vacation and Darcy is being trained to look after me in the pool. After stretching it is time to walk. The good news is that I can walk unassisted in the pool that is without hanging on the side of the pool or hanging onto Yonna. Walks are about 15 meters and I have done as many as 2 laps…yeehaw! The water buoyancy is almost too much as I walk on my toes on both feet. It is then to the deep end for some water walking, that is the best part. Just getting the legs moving in all directions feels soooooo good. 

After the pool, it’s time for the hour massage… it is a deep massage on the shoulders, arms and left quad. It feels much better when she stops.  The massage is over by 3. An hour rest then onto the trainer. On the trainer there are programs to choose from. I use program 1 because it has 2 pyramids and I usually do tension 3 to 4 to 5, then back down again then repeat. Back 6 months ago I was at tension 5,6, 7 then 6,7,8 and even 7,8,9 and getting maximum distance of 5+ k in 15 minutes. I thought I’d try upping the tension again to see what would happen and turned the tension up to a moderate  4,5,6  for 15 minutes, a 3 minute cool down and another 15 minutes at tension 3,4,5 the 3 minute cool down. 

As with most trainers there are handlebars beside the seat to hang on. I usually don’t hang onto them as the physios don’t want me pulling with my arms. However, since the tension was up a bit and I was feeling good, I used my right hand on the handlebar to push harder on the pedals. Remember the sore back.  As I can only hold with the right hand, when I pull the lower left back muscles tightens as I pull with my right arm and push the right pedal down. I just figured out what I had done while writing this blog. I must have just fried those lower back muscles and they went into spasm/cramping  every time I tried to use them on Thursday. Went to the Dr. on Thursday afternoon as the physio thought an anti-inflammatory may help. The Dr. agreed and gave me a prescription of Celebrex for 90 days. Took one at supper and one at breakfast. The back was a lot better on Friday. Still needed help getting out of bed but it didn’t cramp up at all. Don’t know if it was the Celebrex or the rest that was doing the job…whatever…long as it is going away. Next time, on the bike I will have Darcy put my left hand on the handlebar as well, that will be a struggle but it will even out the pulling!!!!!!!!!!! We’ll see!

I don’t think I had better tell the Physio about the cause of the back problem, or she’ll put the kybosh on all bike riding. Must be very careful that the bike riding doesn’t interfere with the walking as walking is the ultimate goal.  I believe the bike/trike riding is strengthening my gluts and my legs which I do need for walking, to me that is a positive, but bike riding can’t interfere with my therapy.  Just need to find that happy medium…eh?  The ol’ Catch 22. Good for the legs but bad if you do too much and how much is too much? You are dating yourself if you remember the movie…Catch 22! Now, here’s the good thing about the sore back. The experts say to make a muscle stronger you must work it so hard that it hurts the next day after lifting. The pain is from all the torn muscle fibers damaged while lifting. The muscle repairs itself in a day or two and becomes stronger. Now my back muscles will be stronger as they hurt like hell on Thursday and were a lot better on Friday. That’s my story and I am sticking to it!

I signed up for Le Tour de Norfolk and will attempt the 40 k ride but realistically I think I can do 10 to 15 k. On Monday,  July the 8^th we, Darcy and I did 7 k outside down Quarter Town Line Road. There are a couple of hills that I had difficulty getting up. The last time I did the hills a couple of weeks ago, I had no problem.  

Oh yes, I had to cancel my therapy on Monday, July 15^th for a Dr.’s appointment with my surgeon in Toronto. The bummer was that we had to be there by 7:45 on Monday morning. Grandpa Bob had agreed to drive and we were up at 4:00 AM and left at 5:10 AM. To get up, Darcy set 3 alarm clocks and asked Bob to call us just in case the alarms didn’t go off. Grandpa called before the alarms went off. There were no cars on the road until we got the Scotland. The QEW was busy as usual but since we had 3 in the car we used the express lane. That probably saved us a good hour. Made it to Toronto Western Hospital at Bathurst and Dundas by 7:20 in lots of time for the x-ray. Sat in the lobby waiting for Grandpa who went to park the car in a city lot…cost 12 bucks a day. Parking at the hospital is at least 56 bucks a day or at least it was 2 years ago. Well worth the walk to the city lot.

Sitting in the lobby sure brought back some memories. Oopps I guess it is called an Atrium. Darcy used to take me down there in a huge wheelchair that she couldn’t see over. We must have looked good me in the chair lay way back with my head in a headrest and my left leg sticking out. Spent lots of time there drinking apple/carrot juice drink from… Booster Juice. Enough of reminiscing. Grandpa arrived and off to the x-ray. Much to my surprise it was a guy. X-rays took about 10 minutes and it was off to Dr. Fehlings’ Clinic. I expected a long wait but we were called in after only 15 minutes. They gave me a survey to fill out. Good thing Darcy was there. Filled it out, Darcy checked it and I had missed 2 pages. 

Dr. Fehlings’ assistant, Dr. Goldstein came in and does all the question asking and then Dr. Fehlings comes in and I get to see the x-rays and that all the hardware is in place, two rods and all the screws al fused in place.  I had mentioned to Dr. Goldstein that I had lost some strength in my left arm. She explained that sometimes a cyst forms in the area where the injury occurred in the spinal cord. The cyst fills with spinal fluid and puts pressure on the spinal cord. They need to do an MRI to determine if it is there…yikes not another MRI. When Dr. Fehlings came in he said he’d give Dr. Potter recommendation that I have a clinical MRI to see if there is a cyst. They can remove them surgically and I believe they put in a shunt that keeps the cyst drained. Hmmmm…more surgery! We had talked about it with Dr. Potter at the last visit and said it was too early for the development of cysts. We’ll see what Dr. Potter says about it when we see him on Aug. 19^th.

Before Dr. Fehlings left he asked if I knew about a study they were initiating called a Functional MRI…FMRI.  Hmmmm….perhaps he needed a candidate for the study and that’s why he called me in…nah I shouldn’t be that cynical, or should I?  What they are trying to do is to see if they can identify the broken nerves in the spinal cord and determine what parts they run. I think Guinea Pigs get feed better so I volunteered. Dr. Goldstein said she would send in The Epidemiologist who would explain the study. The Epidemiologist was Natalia who I had worked with before in 2 other studies. It was like old home week seeing her again. She explained the study and what it involved. It would take about an1½.  Here’s hoping that it’s not an hour and a half in the MRI tube. They better have lots of Ativan…

I found this abstract about a study Dr. Fehlings had worked on with an f MRI. There is one very interesting stat. There were 9 incomplete Spinal Cord Injured People in the study and 6 of those had recovered full function. What I don’t know is if it was the f MRI that caused full function or they recovered on their own? Things enquiring minds need to ask the next time I see them.  If anyone wants to see the abstract about the study, go to http://www.ncbi.nlm.nih.gov/pubmed/23029097 We know the brain is plastic but this research is proving that the spinal cord is also plastic and can also build new pathways around an injured portion of the spinal cord.

Friday I did another ½ hour on the trainer but kept the tension at 3 and just did some spinning. This was the first time I got more distance in the 2^nd session than in the 1^st. 4.3 K in the first and 4.5 K  in the 2^nd. Karate class on Saturday morning and a big rest day for the ride on Sunday. Learned something on Friday night. Before bed I went for a walk out to the kitchen and back to the bed. As mentioned before, exercise causes my nose to plug up. Well walking is exercise and my nose plugged up until about 2 AM. Can’t sleep because I breathe through my mouth and it gets very dry. Makes for a very short night. The good news is that I was able to get up out of bed unassisted in the morning.

On Sunday it was time to do the Tour de Norfolk.  GrAandpa came over at 8:45 and put the rack on the car. The plan was to have Grandpa ride with me and Darcy following in the car…but… Grandpa wanted to see if Darcy’s trike would fit in the back of his Kia….it did. Change of plan…Darcy would ride with me and Grandpa would follow. Got to Dehi and registered and went to our starting point as it is too hilly around the arena for me to start out. Drove out to the 12^th Concession and Hawtrey Road. Unloaded the trikes and got mounted. Getting on the trike is easy,  stand up at the door of the car and I straddle the front of the trike and sit down.

Riding was interesting. I had difficulty on any little rise in the road. The left leg is that weak and it has difficulty pushing the pedals. Managed to do 13 K with Darcy. I would have gone further but there was as hill after the rest stop and there was no way I was doing that. Yvette, the organizer had the sag wagon driver help me get off the bike. My friend, Roseanne rode with me. We had a little deal going. She is trying lose weight and I just wanted to do some of the ride. Two good things, first of all I did the ride and second, wait for it…I didn’t overdo it. Initially the goal was to do the whole thing but given the training I did, I’m happy with 13 K. Legs aren’t too tired and the knee feels ok and no sore back.

How am I Feeling? 

I am a little apprehensive about the cyst. That is not a good thing to be thinking about. My roommate in Parkwood had a cyst and had a shunt put in and it started to plug up. He had 5 operations in 4 months as the shunt kept getting plugged with scar tissue. Yes...yes..I know, every case is different but it is still something to carefully think about.

Feeling good about the walking. I am getting better at trusting Darcy hanging on the belt and keeping me upright. I have those Merrill Glove running shoes that are supposed to be for natural running and you can feel your feet. I find I walk better at home with my regular shoes on than I do at Parkwood with the gloves on. There are no heels in them and I feel like I am going to tip over backwards. I will try walking on Monday at Therapy  and test out my hypothesis that I walk better in regular shoes. When I walk at home I don’t seem to catch my toe as much. Of course that could be that I walk further at Parkwood, tiring out the left foot…we’ll know next week.

Thanks for listening…

June 17 to June 30, 2013

Monday June 17^th: Happy Birthday to Darcy. After therapy we went to see Dr Potter. He had given me some muscle relaxants to try to handle the muscle tone. He upped the dose and we’ll see if that helps. Finally a Dr. said that exercise causes muscle tone and he will try to find the best meds to see what will work the best. Now you won’t have to listen how tight I am ever again. Went to the gym with Grandpa at 3…yes I was tight oops…not supposed to mention that.

I am trying to lose some weight and Darcy got Skinny Cow chocolate bars that are very low in calories thinking it would satisfy my sweet tooth. As I’m eating the bar the dog comes over and I thought I’d share it with her. Note: Myah will eat anything. I gave her a small piece and she smelled it and walked away. Guess I won’t be eating Skinny Cow chocolate bars. Looked at the ingredients and there is nothing natural about them, It’s just a chemical bar. 

Tuesday June 18^th: Had therapy. After getting stretched out, we did a lap with Barry and Stephanie on each arm. They are pushing and pulling me to get me to stand up straight. We have a new brace that goes around my ankle and a strap attaches to my shoe laces and holds up my toe. That makes it a lot easier walking. The next round, Stephanie put a belt around my waist and gave me the cane. I walked half way around with the cane and Stephanie keeping a hand on the belt…just in case. On Thursday She is going to see if Darcy can walk with me and I  can start doing more walking at  home…yeehaw!

Wednesday June 19^th: Busy day. Off to the gym at 9, with Yonna and Grandpa, to the pool at 11:30 with Yonna, a massage at 2 and coffee at 3 with the guys. Tightened up after the workout. Chest very tight, tummy tight and even my nose plugs up.

Thursday June 20^th: Therapy day. Woke up….tight…go figure! Got into prone lying with my head over the end of the table. Stephanie did a good job of relaxing some of the tight muscles in my back. Then got into the standing frame for 10 minutes. Did a walk with Stephanie and Barry assisting…didn’t go all that well. Find it hard to walk with the physios pulling and pushing various parts. Walked with Darcy holding the belt and using the cane. Get practiced with Darcy then I can do some walking at home.

Got home and did ½ hour on the trainer. Tightened everything up again 

Friday June 21^st: A day off therapy so to the gym with Yonna and Grandpa at 10. From the gym back home to get the bathing suit on and a ride over to the pool for a swim with Yonna. 45 minutes in the pool with most of it in the deep end doing ’water walking.’ Feels good to float.

In the gym Yonna and Grandpa got me up for a walk when the workout was done. One of my better walks, if I do say so myself! Was able to hold my toe up and didn’t stub my toe once. After a walk of about 10 feet I start to tip to the right. I started noticing it on my own and was able to correct it. A  good thing!

Yup…trying to ignore the muscle tone and maybe it will just go away.

Saturday June 22^nd: Well ignoring it does not make muscle tone go away. Grandpa came over after coffee break to help me on and off the trike. He rode over on his bike and we did 5 laps of the crescent which is about 2 k. Since I hadn’t been riding much it took a bit of coaxing to get the knee going around. Eventually it gets going. I think about half of the force I’m using with the right leg is to bend the left knee. Had to stop as the muscle tone was getting worse…grrrrrr! 

Sunday June 23^rd: Nope…ignoring the tone definitely does not make it go away. Karate class at 10. I don’t think sitting in the chair for a couple of hours helps the tone very much either. 

Monday, Tuesday, Wednesday, Thursday, June 24^th,25^th,26^th,27^th: Therapy on Mon, Tues and Thur. To the gym on Mon and Wed and in the pool at noon on Wed. At therapy, using the belt all the time now and doing laps with Darcy. I found the company that supplied the belts to Parkwood and ordered one of my own. We’ll get walkin’ as soon it gets here.

Wed was a busy day with weights at 10, the pool at 12 and a massage at 2. At 4 o’clock as usual the nose starts to plug and it feels like there is an elastic band tied around my chin and head. When I get into bed it usually goes away. It didn’t. At 10 when Darcy goes to bed it was still plugged so no CPAP. Darcy stayed up until midnight but still no breathing out of the nose. With a plugged nose, you breathe through your mouth and the mouth dries up and you stay awake taking small sips of water. Finally at 2 AM the nose opened up and finally got to sleep. The PSW comes at 5:50 on Thursday mornings. Not a lot of sleep.

Got back in the standing frame at therapy. That’s the table where they tie a belt around your butt and lift you into standing position and hold it standing up tall. I started doing this for 10 minutes before and after walking sessions.  Standing helps open up my hips which I need a lot of. I walk better after being in the standing table.

I’ve been noticing a couple of things happening over the past couple of weeks Yes it’s about peeing. I was peeing consistently about 350 to 400 ml then I have noticed over the past few weeks that it has increased up to 500 to 600 ml. That is too high and I will be stretching my bladder, which is not a good idea. 

I’ve also noticed that my right arm isn’t working like it did and that’s the good one. I can’t curl 1.22 kg. Can’t lift my arm straight up or do a chicken wing…you know like you do in the chicken dance. The arm is getting weaker and in the morning I have trouble shaving cause, can’t lift the razor to my face very well and even eating, the head has to bend down toward the spoon. I know can’t is a 4 letter word, ok the right arm is weak and doesn’t move as well as it once did. The arm was very strong when I left Parkwood and I thought I didn’t need to do much work on it so I let it slide.

On Thursday I mentioned to Stephanie that my arm is getting weaker even when doing a weight program. She checked the range in my arm.  It moves through the complete range, I just don’t have the strength to move it through the range. When I try to move my arm to do any movement my brain immediately hikes up my right shoulder. I have traps of steel. Even when I can’t lift my leg or lift my foot, my brain hikes up my shoulder. Believe it or not but my brain now thinks my right shoulder can help move any part in my body. That’s how bad the wiring is screwed up. My brain is recruiting the wrong muscles to do the task.     Stephanie said I must cease and desist all arm workouts until I see her next Tuesday….grrrrrr!  Goes to show you that you can build new neurological pathways even though they may be the wrong ones.

Friday June 28^th: During the night, Dr. Steen started analyzing the data. I started taking extra muscle relaxants about 6 weeks ago to help with muscle tone in my trunk. It seems to me that my arm started getting weak about that time and Dr. upped the dose a couple of weeks ago. If a relaxant works on tight muscles it works on none tight muscles making them go flaccid and weaker. That’s my theory and I’m sticking to it. On Wednesday the 26^th, I wasn’t lifting as much weight as I normally do, both on arms and legs, Yonna chalked it up to being, ‘one of those days!’ Now I am convinced that it is the relaxant. The Dr. said I could up it to 3 mg a day and I’ve been there for a few days now. I will slowly get off it, .5 mg at a time. We shall see what happens!! Perhaps no bad pathways were created, the muscle in the arm is just too weak to do the job so the big trap tries to help.

Saturday June 29^th: Saturday morning class….Sensei John and Sensei Linda were away tending to their new Grand Daughter. Congrats Sensei Sara… another job well done! 

Frank the 79 year old never ceases to amaze me…doing all the drills! Pushups and leg raises.

Since I have the new transfer belt I can now walk at home with Darcy. At first I was a little leery about walking with Darcy. She was quite confident that she can keep me upright. Walked from my bed to the chair a distance of about 10 feet, opps 3 meters. Did that 4 times. Before we got going Darcy put on my Merle walking shoes. They are the new type of running shoe that is very thin so I can feel my feet.

Walking at home is going to help a lot. I will lengthen my walk when I become a little more confident. Darcy is ready to do it now….ha…I’m usually the gung-ho one but this time it is Darcy that wants me to push me to do more. I will get there and soon will be walking around the kitchen. I have this fear of falling…Darcy is quite confident that she can keep me up.

Sunday June 30^th: The last Sunday morning Karate Class, their grading is next week.

Did ½ hour on the trainer. 

How am I Feeling?

From the tone…ha…of the last couple of blogs, it probably sounds like I am getting a little down. I don’t think I am. Writing about the muscle tone and those issues helps me rationalize putting up with it. Very pleased with the way the walking is coming along. Stephanie is going to take some time each session to work on my arm to see if we can get the right muscles firing again. A little concerned about the right arm, it does everything for me. I need it to eat, hold the cane and just getting around in general.

Thanks for listening….