Resilience is spelled Glen Steen.

Resilience is spelled Glen Steen.

A Blog from his Daughters

What is Resilience? If you spent a day with my Dad you’d see first hand that definition in action.

Over 3 years ago Dad had his accident. . .cycling along, doing what he does and then things changed.

Change is inevitable in life, learning to accept those changes can mean the difference between living happy or not really living at all. My Dad has always been my teacher, never more so in these past years; he has taught me what it means to be resilient, to move forward to always strive for the best – to NEVER give up.

Dad went hard, fast and strong into his physio like only the marathon man he is could do. He went up against the odds and came out on top --Doctor’s told us as he moved through his physio that he was WAY ahead of where anyone else with similar injuries would be; with his dedication and endless endurance he tackled  his physio like his marathon rides and made SO many gains.

They say in many sports there is a “wall” . . and you must hit the wall, and keep going to succeed. But, what if you hit the wall, and the wall stopped you at every avenue you tried to move forward? My Dad has hit that wall, and that wall is called Muscle Tone.

Muscle Tone is a real JERK. Imagine your hanging out doing your thing and all your muscles decide to tense up – for NO reason. You’re clenched, feel tight, you’re in pain, lots of it and it seems everything and nothing all at the same time seems to be the culprit.

Life can be mean sometimes, Muscle Tone is not fair, NONE of this is fair. There have been many times in the past few years that I have kicked, screamed and cried to the ends of the earth. . . Not pretty emotions, but I’m of mind to think that every emotion is valid – the trick (and my Dad taught me this one) is not to get stuck in those vulnerable and less then happy moments, feel it, accept it. . .and move forward – that’s resilience right there.

There are good days, and bad days. If a good day is 3 minutes on the bike and NO Muscle Tone, that needs to be celebrated BIG time - in this new realm of Quadriplegia that’s an old skool Steener marathon of 600k in comparison! Go Dad!! You make me proud EVERY single Day.

If a bad day is a week of unrelenting muscle tone – I can STILL hear his smile though the phone. “It is what it is,” he says and in my mind that is wisdom without measure.

My heart says he deserves SO much more, he does. But, he is moving forward, with his grit, determination and resilience in full check. Muscle Tone, you jerk – we will get to the bottom of you! ((Literally if haemorrhoids are a factor :P ))

It looks as though I have inherited my Dad’s feet. . . Dad, you certainly have left me with BIG shoes to fill, if I inherited the resilience you have in your little toe a lone. . .well, that’s something we can ALL aspire too.

Love you Dad.

xo

Kelly & Meghan

Apr 7 to Apr 20, 2014

Mon Apr 7^th: Well Monday was the same as usual after no BM the night before. Sitting on the john for a while with little success and on with the Depends that I didn’t need. Was all toned up. And had that pain in my lower right tummy above my appendix. It is where the ascending colon meets the transverse colon. The pain is almost like a cramp. As you know I am on a ton of laxatives. When I was constipated we increased the number of Softlax to 6 pills a day as  we were told that it is just mineral oil the helps thing slide through. It isn’t, it is a laxative that contracts that irritates the bowel to make it contract. It was very irritating....grrrr. The nurse from Parkwood had called after they had gone over my laxatives. Here’s what I’m taking: 2 teaspoons of Restorolax, 3 tablespoons of Milk of Magnesia, 6 Softlax, a tablespoon of lactulose every other day and 2 Senokot. The nurse recommended that I up the Restorolax to 4 teaspoons as it absorbs water into the stool and drop the milk of magnesia down to 1 tablespoon as it neutralizes the acid in my stomach. 

The pain in my bowels may be from the irritants, Senokcot and Softlax doing their job. That visceral pain is causing my muscle tone. We are dropping all the Softlax, lower the milk of magnesia and stopping the lactulose. Haven’t noticed any difference yet but we’ll give it a day or two for the intestines to settle down.  Perhaps the scope will show what’s going on in there.

Tues Apr 8^th: Been off the Softlax for a day and a bit now. Haven’t noticed a lot of difference in my tone. My tummy still hurts. The bowel may still be irritated and that may take a few more days to settle down. My abdominal muscles are very tight and it is sometimes difficult to differentiate between the abs and the colon but it sure feels like the colon is still tight. If this is too much info, skip the next couple of sentences. During and after a BM I can actually feel my colon contracting. It feels like a big cramp from the right side across to the left side. In a normal person peristalsis starts the colon contracting on the right side and a ripple of contractions/relaxation moves along the colon forcing the stool ahead of it. Dr. Steen thinks that my whole colon contraction but the relaxation doesn’t happen for minutes or sometimes hours later or maybe the whole colon contracts at once don’t really know but something is cramped up in there.

The Softlax and the Senocott irritate the bowel to start the contraction and if you take them for too long, the bowel gets lazy and doesn’t contract on its own and that’s when impaction starts. There is a very thin line between starting and stopping bowel irritants. I took Senokot while in the hospital and ever since. I was impacted in October and increased the Lactulose and Softlax to help everything move and it worked.  We will try some combinations and see what works. We’ll see how everything works with just the Senokot.

No bike riding but a walk of about 20 feet before bed and 10 sit to stands and 10 shallow knee bends. It’s a real downer as I can feel my legs getting weaker. Especially the left leg can’t pick up the toe as well. Trying to work it as much as possible in bed and when sitting in the chair. I did manage to sit up to get out of bed a couple times. Haven’t been able to do that for a while. Oh yes the BM  went well!

Wed Apr 9^th: Well, a whole day without Softlax. It feels like there is a little less tone just above my hips. It is amazing how much more positive I feel with just that little gain. The ol’ mind is a strange thing. Speaking of the mind we have started reducing the olanzapine slowly as it did nothing for my tone. 

Did go to the pool today as the legs are still very tight. We’ll see about tomorrow.

Oh yes, some good news, Darcy gave me $500 for Christmas to play on the stock market. I now have, wait for it...$812, which is a 62% gain. How’s that for picking ’em. Now that I mentioned it, it will drop tomorrow. I expect a drop as a lot of investors will be taking their profits. I think I’ll hang in there a bit longer. The company makes special chemicals used in solar panels and LED lights, and both those industries are taking off. We’ll ride it out for a while. If I make money Darcy may give me another $500 next Christmas.

At bedtime, after my BM, I walked about 20 feet and did 10 or so sit to stands. I am feeling better. Got into bed at about 8:30 and at 5 to nine, I know the time as the PSW was just leaving. I had another BM. Onto the commode and back to the john. Can’t figure that one out. Perhaps if I didn’t walk or do anything it would have stayed in and perhaps that is how impaction starts. I think I will do a bunch of sit to stands before the suppository goes in and that might get things moving. 

Thurs Apr 10^th: Thursdays are good the PSW comes at 6:30 and I am showered and ready to go at 7:30. Felt really good, no pain in the tummy and my waist was not toned. The back and legs were tight but less so than last week. Did an hour workout in the bed and went to the pool. First time at the pool in 2 and a half weeks. Took it easy, floated around for a short time did some stretching, side walking and just one 15 m walk to the deep end and just 10 minutes in the deep end kicking my legs around. 

Thought I took it easy. A couple of friends dropped around for a chat. Feeling ok, but then my nose started stuffing up and I felt very sleepy. Went with Darcy and the dog for a walk round the crescent. So nice to get outside. The first time outside since last fall. Nose plugged up and dry mouth. Supposedly these are dysreflexia symptoms. Had them last night and Darcy took my BP and it was 126 over 79, quite normal. My legs feel tingly and burny but that didn’t start until about 3:30 PM.

Guess what no BM. The pool and some sit to stands before the suppository went in probably tightened everything up.

Fri Apr 11^th: Gotta stop talkin’ about BM’s and colons etc. but unfortunately that is my reality right now. I’ll limit the description. Got Darcy up at 3 AM and to be brief I didn’t make it to the bathroom in time.

I thought when we stopped the Softlax and went to decreased laxatives the ol' bod would start to loosen up. It did loosen up for a bit around my waist but then the pool tightened everything up again grrrrr. Writing this blog sitting in the chair is painful. The legs are tight/burny, the ribs are sore because the muscles are very tight. Just don’t know what to do. If I sit around anymore I’ll soon be too weak to walk...hmmm...guess that is a little bit of self-pity. No we’ll figure something out, just not tonight!

Sat Apr 12 to Sun Apr 20^th: It has been and up and down week. Some days I’m so toned up I can hardly move. It is difficult to walk with a back that is very tight. I keep getting a stuffed up nose, ringing ears, numb ears, tight neck muscles and a very dry mouth. But I think we are starting to figure things out. Any pain that I feel gets translated into something else. When the pain impulses go to the brain it would know what to do with it. Now the pain impulses get to the damaged spinal cord and get transferred somewhere else. When I have a full bladder, I get the stuffed up nose, dry mouth ringing ears etc. If I have a pee they go away sometimes for a short time and sometimes they go away for hours.

Another thing causing pain is my rectum. After a BM, it hurts for hours and my nose stays plugged up and that whole syndrome of effects starts. Preparation H helps a bit at calming it down. I really need the scope to figure out what is going on up there. Supposedly the Dr. is working on getting me the scope. Even sitting here in the afternoon writing this, my rectum hurts and the ears are numb and ringing. I’ve been trying to do my hour workout for my legs and arms every day. Haven’t got back to the pool this week. I am walking every night from the bathroom across the kitchen, about 20 feet. Then the left foot gets tired and when I can’t lift the toe up, it’s time to sit down. 

Another interesting thing has happened a couple of nights. I have the BM, do the walk, do some sit to stands and then it’s back to the can to finish off what I started. Since I stopped using the 6 SoftLax, daily, the pain in my lower right abdomen has almost disappeared...yeehaw! I think we have got the laxatives figured out as everything is working quite smoothly now...lol!

With the stuffy nose at night I can’t use my CPAP and I haven’t used it for months. Perhaps that is why I fall asleep at the computer or at coffee with the guys. Or several of the meds I’m taking cause drowsiness or a combination of both.

Since I have been doing the weights on my right arm it is almost back to normal. I can brush my hair, well almost, someone has to get a spot at the back of my head, but I can now brush my teeth easily. At least one thing is working. Really need to get back to the gym and get on the leg press machine and up the mileage on the bike and start walking further. I know I must do it slowly. Got 4.8 k in this week sure is down from 25 to 50 a week I was doing 3 months ago. Another goal. 

The goal now is to get back into therapy. I have lost a lot in the past month and must build up again slowly to be able to do therapy again. Need to get into the pool and walk there and get the legs stronger. 

Had some outings. Went to Pinecroft with Jack and his wife, my friend from Parkwood. It is good for Darcy to talk to Jack’s wife who has the same difficult issues as she does.  Jack is a little more mobile than me. He can walk with a walker or canes and has the use of both arms. We arrived at Pinecroft and we had only the back for the wheelchair, no cushion. We always have a wool blanket in the car, folded it up and it made a usable cushion. It was lower than the cushion but worked very well. I don’t think my knees would have fit under the table if I was on the cushion as my knees just fit under and the blanket was about 2 inches lower than the cushion. I was bad, lol had cherry cheesecake, but I didn’t eat all the whipped cream or all the cherry stuff. That’s a lot of bike rides to get rid of that. Met one of my nurses from Parkwood, took me a minute to remember but I even remembered her name, Cindy, a very nice lady! At Pinecroft I had 2 and a half cups of coffee and Darcy claimed I was very chatty. I will admit I was singing along with the radio which I don’t normally do. Had coffee with the guys a couple of times. Seems all the practicing they did over the winter didn’t help their golf game very much.

Missed a few things, haven’t been to karate class for a month. Just seemed every Saturday I was very toned and sitting in the chair for an hour+ wouldn’t have helped. Saturday, I  didn’t go to class so I’d be ready for Kelly’s 50^th (not my Kelly) birthday party at night. Well things didn’t work out in the BM department and I missed the party as well...grrrrrr! 

How am I Feeling?

A lot better than the last report. I think we are onto something with the bladder pain and the intestinal pain. Need the scope ASAP to see if there are any issues up there. Once we get the bladder and the intestines figured out perhaps that will resolve all the excess tone in my legs, arms, back and tummy. Guess that last blog got some people concerned as a couple of old rugby buddies came from Brantford for a visit. Ken a cyclist from Ancaster came for a visit as well. He brought Darcy some flowers as he knows how hard she works as he is looking after his elderly parents, 

Thanks for listening...

Mar 17 to Mar 30, 2014

Mon Mar 17 to Sat 22^nd: Rather than bore you with the day to day details this week has been a very tight week. Started out with tight, back, arms and legs. The nose gets stuffy and my ears ring and the eardrums vibrate which is uncomfortable. Even swimming was a problem. The leg muscles are so tight I have to work to bend and straighten my legs. I walked from the bathroom to the bed a couple of times. That really tightened everything up for bed. If I don’t move at night I don’t feel the tight muscles until I move in the morning then bam, it’s all back again as soon as I move. Went to coffee one morning and sat in the manual chair for 1½ hours. Got home and the back pain was at about an 8 out of 10.

Since I was getting so tight/toned, I decided to restart to nabalone, again which is synthetic marijuana. We took it out because we don’t think it was working so we put it back in on Friday as I getting a little desperate about the muscle tone .Took 1 gram tablet Friday at noon and at night and then one at breakfast and at noon on Saturday plus a ‘relax’ pill and some hydromorphon. Saturday was a very strange day. I was tight/toned when I got up in the morning. I felt more tingly/burny than usual. Did karate class and tightened up some more after a very short walk. When I got home I did the stretching drills in bed to try and loosen up. It didn’t work. At about 2 o’clock I started to feel different. My ears started to ring louder and vibrating ear dumbs picked up and it felt like all my muscles were being pulled tighter and tighter. My eyes also started to go in and out of focus which made it hard to read the screen. Had supper and ate but I really wasn’t hungry. Still feeling strange after supper and as I write this blog the print is fuzzy. I have a strange feeling on the left side of my head, not really a headache just feels like some pressure there. It’s not a stroke, I stuck my tongue out and it came out straight, so no stroke.

All my muscles are tight/toned and feel like they are being pulled tighter and they are tingly/burny  particularly the legs above and below the knees. Wish I had something good to report but not being able to any exercise has really got me down, no gym for 2 weeks, and no bike and now I won’t be able to go to therapy. Okay, I just feel like shit. Going to bed catch you in the morning.

Sun Mar 23^rd to Wed Mar 26^th: Felt better in the morning. Still so tight/toned that I’m not going to the pool or riding the bike or walking as it seems that any exercise tones me up. It is particularly aggravating because it tightens up my rectum and I can’t poop. If I take enough pain pills to relieve the pain, I get very constipated. Don’t know what’s worse, constipation or pain. Perhaps, I should try the bike for just 3 minutes to keep some leg muscles working. I am finding that since I am not doing exercise and not using my legs by the time I get into bed at night my feet are like ice cubes.

Yourleg muscles help the blood circulation in your legs. When you walk or stand the muscles contract and then relax. This contraction and relaxation helps pumps the blood to and from your feet. Since I am not moving and the muscles in my legs just contract they don’t help move the cool blood away from my feet. I get ice cold feet. No muscle contraction/relaxation in the legs = poor circulation. In the past the right foot has always been colder than the left foot, now for some reason it has switched. Lying in bed seems to warm them up, guess with the legs lying flat it allows the warm blood to get down there and the cold blood to move away from the feet with no help from the muscles.

Monday, I had the ultra sound on my stomach and got a Dr.’s appointment in the afternoon. The ultra sound didn’t show anything abnormal. I had extensive blood work done and it all came back normal. The Dr. doesn’t know what to do with me or what to look for. He said he’d talk to the Dr. at Parkwood. I have the uneasy feeling that this is the progression of the condition. Exercise causes muscle tone. 

It’s even tough going for coffee and sitting in the manual chair for an hour or so. It is very hard to speak has I have trouble sucking in enough air to speak and by the time I get home I am a real mess.

After lunch Darcy and I did about 20 minutes of stretching and used the back massage vibrator on my back and legs as vibration is supposed to relieve muscle tone...2well it doesn’t, at least not yet. We’ll do it again around 3. Another issue is my mouth dries, out. It’s not from breathing through my mouth but my face and ears get tone up and my salivary glands don’t make spit anymore and that can last for several hours. I much prefer the old hangover day’s dry mouth to this.

I am painting and I am going to finish this one come hell or high water. My biggest complaint is that I haven’t got the tone correct. The dark areas are too dark and some of the light areas are to light and some are too dark. I use a lot of colour straight from the tube which is a no-no. I haven’t figured out how to correctly tone colours down with white paint. I don’t quite have the colour knowledge to tone colours up and down with other colours. For example, what colour do you add to yellow to tone it down? Can’t add white as that makes it brighter. Guess practice makes perfect. I do have trouble doing detailed work such as drawing tree trunks, branches and any other fine details, such as adding fine highlights etc. As they say some of the best art is actually from making mistakes, so I’ll have some very good pieces...lol!. Given the muscle tone, I can only paint for an hour or so and that’s not long enough to get the right side of the brain, the creative side of the brain tuned in. The painting is about 75% finished. I’ll keep plugging away at it. 

Mar 27 to Apr 6

I really don’t like what is going on every day my muscles are in spasm. My legs, arms, back and stomach are all turned on. The pharmacy changed some the drugs from brand name to generic. We will try to get them changed back.  Generic drugs can be as low as 90% of the brand name drug. I take 120 mg of baclofen daily. That means I could be missing up to 12 mg of baclofen a day. Only about 1% of the oral drug actually gets through to my spinal cord so I need all I can get. We’ll get the Dr. to straighten that out. 

As mentioned, my rectum tightens up and I can’t fart. There is a buildup of gas which causes pain which causes the muscles to tighten up and around and round it goes. If I exercise that is any exercise, walk, ride the bike or go to the pool it tightens up everywhere. After just 3 minutes on the bike my rectum is so tight I can’t poop at night which means I have an intestine full of poop that causes pain and I tighten up more.

I have had to cancel therapy because their goal is to get me walking and I have so much muscle tone, I am unable to walk.  

I saw the Dr.at Parkwood on Monday, Mar 31. I had the Botox put in my arm and then had my 6 month checkup. I was in bad shape, very tight/toned everywhere. He hooks me up to an oscilloscope to tell when the needle is in the right spot. There is a lot of static and he mentioned that if it was on his arm it would be silent. The static is from my muscles being on all the time.

We talking about my muscle tone and what could possibly be the cause. As mentioned muscle tone or muscle tone overflow is usually caused by something visceral...intestines, bladder. Whenever I have gas or can’t poop I get a pain in my abdomen about where my appendix is. Now here’s a great example of this. On Thursday night I didn’t have a BM. I was a hurting puppy all day Friday. 

Tight/toned everywhere and a pain in my low right tummy. Put the suppository in as usual and went for a poop. It wasn’t a real big one considering it was two days accumulation. I know this is too much info but this my reality. There was a lot of gas that I had to force out.  Thought I was finished and got into bed. I was still very tight and very uncomfortable and had a sharp pain in the lower right tummy. Took some pain meds but that didn’t help. My nose was still plugged up and my mouth was dry. At about 10:30 when Darcy was heading for bed she rubbed my lower stomach in a clockwise direction which is supposed to help the bowels work. Well it did work. After about 5 minutes I had to go on the john and had another BM. The pain in the tummy subsided and I was able to get to sleep.

Back to Monday with Dr.  Mentioned the bowel problems and he said he’d send a note to my family Dr. to have a scope to see if there is any problems up there. Geesh, can’t wait for that. The other thing we talked about was a baclofen pump. Since about 1% of the oral baclofen gets to the spinal cord they would put a pump in my tummy with a line running around to my spine to but baclofen directly on my spinal cord...yikes! I would go to UH and before they put the pump in they would inject various amounts of baclofen into the spinal cord to see what dose would work. Once the pump is in they would adjust it to the right amount. The pump holds enough for 2 to 6 months.

The other thing we talked about was my back pain which could also contribute to my tone. He suggested that I have some steroid injected into the facette joints in my spine. Those are the little joints between the vertebrae.

The other grabbing at straws thing we did was to do with olanzapine which I started in the hospital for depression. We took it down slowly as you can’t go off it cold turkey. It stopped the last week in February and that’s when I started to tighten/tone up a lot. Did some google research and found that in a study of 12,000 patients olanzapine stopped muscle tone in 29 of them. Not a big number but I may be in that group. I am back on 2.5 mg of olanzapine for 3 days now but no noticeable effects.

I’ll have the scope and the steroid injection into the back and if the scope doesn’t show anything wrong with the bowels I guess it’s give the baclofen pump a try.

It is getting quite boring as I can only ride the bike for 5 minutes a couple of times a week. Haven’t been in the pool for 2 weeks. Talked to Stephanie, the physio at Parkwood and my therapy is on hold until we get this thing sorted out. Must be careful with the muscle tone as the muscles can pull so tight they start to pull the ligaments off the bone...don’t want that to happen.

Oh yes, we went to Motion Specialties on Monday, after lunch at Cora’s to see what they can do about my manual chair to make it more comfortable. He moved a few things around and put a lumbar wedge in the back of the chair. When I go for coffee in the manual, I can’t sit for very long as my back starts hurting a lot. Right now I am sitting in the electric and we use the same back and seat from the manual. We moved the wedge a bit and my back is just killing me right now. Darcy is downtown, I will get her to move it or take it right out cause it sure ain’t working in this position. The chair fitter from Motion Specialties is coming on Monday to set me up in the power chair.

Sun Apr 6^th: Not a good day. Couldn’t get comfortable in the chair. Played on the computer and painted a bit. At 3ish, rode the bike for 5 minutes at tension 2 for 1.2 k and a 3 minute cool down at tension 1. A far cry from 40 minute rides at tension 5, 6 and 7 and 6 minute cool down at tension 3.That short ride tightened me up so much that I couldn’t have a BM at 8 o’clock. Hopefully it will all come out alright in the morning... 

How am I Feeling?

Like shit...but Darcy and I may be onto something. Tell you on the next blog.

Thanks for listening...

Mar 3 to Mar 16, 2014

Mar 3^rd to Mar 7^th: It’s been sort of a hard week both physically and mentally. Monday started out great and I had a great workout in the pool. Lots of stretching, walking and I walk up the steps and out of the pool. Tuesday morning, before the pool, I did my workout in bed and decided to do some crunches. I did 3 sets of 15, 15 straight up, 15 with legs to the left to get the obliques and 15 with legs to the right. Repeated that 3 times. All was well until I tried to get up on Wednesday morning. The PSW really had to work to sit me up. My stomach muscles went into spasm and all my chest muscles as well. It became quite painful and when the chest tightens it squeezes the breath out of me. Now this happens when I stand to get into bed and getting into the car. By Friday it was starting to ease off a bit. Lying still at night also helps but as soon as I move they tighten up.

On Wednesday, we had made arrangements to visit Jody, my Occupational Therapist at Victoria Hospital who is suffering from cancer. We were to meet her husband Bruce in a waiting room on the 5^th floor. We arrived at 1:30 and Bruce said we’d have to wait as the palliative care Drs. were going to go over the end of life with Jody and Bruce. I really didn’t know what our visit was going to be like as Bruce said her life expectancy is down to weeks. They have taken her off the chemo to give her body a rest.  They think the chemo has arrested or stopped the cancer in her lungs but it’s not doing anything for the cancer growing in her brain. She’s had the maximum dosage of radiation in brain and it hasn’t stopped it.

Jody helped me a lot in Parkwood, she is such a caring person. I would have my scheduled hour with her at 10 to 11 and then she would ask me to come back for ‘Glen’ time at 4 to 5 o’clock. She did that on her own time. She played a huge role in my recovery with her sense of humour getting me through my depression. It must have been very difficult for her investing so much of herself in me. I was a real mess. The first time I met her she said I would get full function back in my right hand and that was when it wasn’t moving and I had to be fed. That gave me a lot of hope. I remember when I was released from OT after 5 months of treatment, the tears in her eyes when she gave me a hug and said I had graduated.

When we got to see Jody, the tears welled up in our eyes and then there was the smile that I remembered. We had a very good 20 minute visit and went through the spring seed catalog picking out flowers to plant in the spring. I should have purchased a T-shirt that said...F#$% Cancer when I had the opportunity

On Wednesday I also found out that Dawn, my artist friend’s mother, Marj had passed away. She had been suffering from a disease similar to ALS. I never met Marj but we had some great chats on Facebook. She was one tough lady and gave me a lot of encouragement.

Sat Mar 8^th:  Saturdays the PSW is here by 6:30, which is great, all ready to go by 7:30. The stomach is still tight but the muscles don’t contract and squeeze the breath out. My back is still very tight and feels like I’m wearing a steel straight jacket.

Had a good karate class, they had a good workout and I was able to walk for the first time in a week and the chest didn’t tighten up. I was thinking while watching the class that I could do a Kata, Heian Shodan. Perhaps I’ll try next Saturday...hmmm...a goal! 

Sun Mar 9^th: Well I was very uncomfortable all day and had a lot of muscle tone. My stomach was bothering me. Went for coffee with the guys and once again solved the problems of the world...but nobody listens.  

Rode the trainer for 20 minutes and got 5.9 k. That was the first ride since Tuesday and it seemed to tone me up more. I get this pain on the right side of my tummy where my intestine is located. I am starting to think I am impacted again...you know full of it.

Mon Mar 10^th: Even more uncomfortable today. Lots of muscle tone in back, stomach and legs. Hard standing. Went to the pool and did a good hour workout despite the muscle tone. Got home and started painting. Stomach was sore so I quit. Getting frustrated as I was trying to paint thin tree trunks and branches and my jerky hand couldn’t make thin lines. I’d start thin and my hand would move and leave a big gob of paint. 

Muscle tone kept getting worse and my stomach was hurting. Had a BM that I thought would help but it didn’t. Got into bed and my stomach was hurting. Dozed off at 9 and woke up before 11 and that was it. Pain in stomach kept me awake. Finally at 3 I woke Darcy up and talked her into taking me to the hospital because I thought I was impacted. She didn’t think I was. 

Got there and waited for the Dr. and she felt my stomach and thought I was full and ordered a couple of enemas. Had both of them and nothing happened. So they sent me home with the instruction to take more laxatives. Got home at quarter to 6. Still no sleep. Darcy was right! Oh this should be in Tuesday’s log...so...

Tues Mar 11^th: ...So...now Dr. Steen has a theory. When they put the 2^nd enema in, there was a couple of big farts and the pain in my stomach subsided considerably until I got home. As I write this I am getting bloated and I can hear gas moving around. The muscle tone not only affects my “muscle” but it also affects my intestines. My intestines are so tight I can’t fart. Gas builds up in my intestine causing pain and bloating or the medical term is diverticulitis. It is not only causing muscle tone but my ears are numb and ringing and my nose is plugged up.

 I am supposed to go to Parkwood for therapy but don’t know what to do. I went. Stephanie loosened me up a bit and me lying on my side over a roll to stretch me out. She did her usual knee in the back and pull my shoulders back. I was still very toned and even my legs were toned up, both calves and quads. The  legs stared toning up about 3 weeks ago. Did several sit to stands which didn’t work too well because of the tone. Did some stepping up on a box both in front and to the side. This helps improve my balance especially when I fall off and catch myself. It was time to walk. When my legs are toned it is difficult for me to lift and bend the left leg. To compensate, I lean way over to the right and actually hike up the hip to lift the leg. Needless to say this screws up my stepping.

 I take very short steps and particularly with my right. I don’t stand on my left long enough as my brain doesn’t trust it enough as well as the hip isn’t too flexible. In the pool I take longer steps as the buoyancy overcomes some of the problems. 

Walked twice with the walking pole, the first time about 15 m and the 2^nd time exactly 10 m. There is a 10 m strip on the floor and it gives me a goal on every walk. I could feel the ol’ bod toning up with every step. Then it was time to walk with no pole and I did 2x10 m and 2 sidestepping for about 5 m. To stretch the legs out I stood in the standing table for 10 minutes. The ol’ body was really toned up now. On the ride home it tightened up more as every bump in the road, and there were lots of them, caused everything to tighten more. At home did the usual stuff, had lunch and got on the computer. That’s when it really started to tighten. My back felt like bands of steel. My nose closed completely. My ears were vibrating and ringing. My legs were rock hard and burning. Got off the computer and had Tylenol and 2 hydromophone and had a meltdown. I couldn’t lay down, stand up or sit in the chair. Finally I managed to sit on the bed and Darcy rubbed my back. After about 15 minutes it started to ease off or the drugs started to kick in. I was exhausted and wanted to sleep but couldn’t because my nose was plugged up.

I can’t sleep with my mouth open as it dries out faster than normal because the meds cause dry mouth. I’ve tried Biotene spray but it lasts about 10 minutes. Managed to lay down in bed and watch some TV. There was a very good soccer game on. Don’t usually watch soccer but this was a Championship round and the play was fast and furious, quite enjoyable actually. Hockey players could learn a lot about taking dives from these guys.

Fell asleep at about nine and woke up at 10 for a pee and had an accident. Darcy had to change me and the bed. Did fall asleep again but woke up at 2 for another pee...gotta stop drinking! Woke up at 6 but it seems I should have been awake earlier as I had peed the bed. That is the first, and hopefully the last that I don’t wake up for a pee. 

Wed Mar 12^th: Still very tight when I woke up, particularly my back and legs. Even lying in bed all night didn’t relax it. Did the exercise routine at 10 and that didn’t loosen things up. Went to the pool with Yonna and she mention how tight I was when she tried to stretch my legs. Did lots of stretches and took it easy so I didn’t tighten anything up. I am rock hard sitting here typing this blog and I am sweating and my eardrums are vibrating which is very uncomfortable. The sweat is probably from the energy expended from the ultra-tight muscles. I am even taking tranquilizers to help me get through the day, which I don’t like doing but you gotta do what you gotta do. Muscles are so tight now my ribs are squeezed together and it is painful.

Thurs Mar 13^th: Still very tight but decided to go to Parkwood anyway. Stephanie tried to loosen me up and it helped a little but as Stephanie said we are treating the symptoms and not the cause. I need to see the Dr. We tried to get an appointment but he wasn’t available. 

After some stretching I did a couple of walks and that toned/tightened me up again. Stephanie doesn’t want me to come in next Tuesday if I am still toned up as I can’t do any therapy in this condition. Must find out what is causing the tone. 

Since the roads are so rough and the bumps cause me a lot of grief, we took an alternate route home, south on Highbury to St. Thomas then across Ron McNiel to Tillsonburg. The roads were a little smoother and I think that will be the preferred route. It’s actually a bicycle route home from St. Thomas. Still all toned up and stayed that way ‘til bed time. Seems to ease off a bit when I am in bed.

Fri Mar 14^th: Still a mess when I got out of bed. Called the Dr. but he was gone for the day. Did exercises at 10 and went to the pool at 11:30. Darcy did some stretching but it didn’t help much. Did my normal stretching once I stood up and worked on the stairs but I didn’t push too hard. Did some walking sideways and only 2 actual walks of about 20 m each. In the deep end did 5 0minutes of water walking, 5 minutes of bring knees up as high as I  can and 5 minutes of s0plitting legs apart. I usually do these exercises with a lot of force but today just did them very ea0sy. Didn’t walk out of the pool as that would have tightened me up even more.

Painted a bit but it is frustrating as I try to dab paint on the canvas to make leaves but my hand dabs too hard and I get big blobs of paint that don’t look like leaves at all...grrrr!

 

The only good thing that is happening is the BMs seem to be working. The nose starts to plug up   at about 3 and  is really plugged by 6 but after  the BM at 8, the nose clears up and the tone subsides a bit. This is what leads Dr. Steen to believe that it is something to do with the bowels. I get the pain in the right side tummy over the large intestine. When I bend forward there is a lot of pressure on my groin and it feels very uncomfortable. 

Sat Mar 15^th: Beware Caesar, it’s the Ides of March! But not only should Caesar beware, there are 9 other bad things that happened on the Ides of March: Of course, Caesar’s assassination topped the list. Other events:  a raid on southern England in 1360; the Samoan cyclone in 1889 that killed 200 sailors in the Samoa harbor; Czar Nicholas II of Russia abdicated his throne in 1917, which ended a 304-year-old royal dynasty; the German occupation of Czechoslovakia in 1939; a deadly blizzard on the Great Plaints, leaving 60 people dead in North Dakota and Minnesota as well as six in Manitoba and Saskatchewan; a world record rainfall in 1952 on the Indian Ocean at 73.62 inches in 24 hours; the cancellation of the Ed Sullivan Show in 1971; the NASA report that the ozone layer over the northern hemisphere has depleted three times faster than anticipated; and a new global health scare in 2003, which soon became known as Sudden Acute Respiratory System (SARS). Hmmmm...seems I have a lot of time on my hands, eh?

Karate class was excellent and I did some of the drills in my chair as I can kick a bit and do blocks and punches with my right arm. The left can do a bit as well.  It did tighten me up. After class it was off to Tim’s, it is amazing to see how many people are addicted to their cell phones and must use them while engaged in conversations at the table. Seems people are becoming more dependent on them and the little beeps they make stimulates a happy spot in the brain similar to the little beeps on slot machines that get people hooked on gambling. Wonder what it’s going to be like in 10 years when there will be no conversation as everyone will be addicted to the phone. Perhaps in 10,000 years we’ll evolve and lose our capacity to speak as we won’t need it anymore. Seems these devices are messing up kids brains as well and interfering with brain development. It’s recommended that kids under 12 shouldn’t use any electronic device. And then.....there is driving and texting/talking on the phone. Just heard that 2 friends of mine do it constantly. If you drive and text or talk, don’t do it, it is very dangerous and in some places it has taken over from impaired driving as the leading cause of traffic fatalities...just sayin’! Okay, I’ll get off the soapbox.

Tightened up a lot in the afternoon. Seems sitting in the chair painting or typing doesn’t help. I can’t ride the bike or do much walking as that increases the tone and tightens me up so much I can’t have a BM. Went to bed all toned up and...

Sun Mar 16^th: ...Woke up very toned up! Did an hour of exercise before going for coffee with the guys at 10:30. The longer I sat the more toned up I became. Got home at noon and I was like rock all over. Nothing I can do loosens it up, as Stephanie said I am just addressing the symptoms when I really need to find the cause. It becomes very uncomfortable when my neck tightens up, the ears go numb, the ears ring and the ear drums start to vibrated very rapidly. That’s when I have to take a ‘relax’ pill to cope. The tone started to let up a little by 5 o’clock but still not enough to do anything.

How am I Feeling?

Used to be that too much exercise gave me muscle tone. Now, I am not going to the gym, not riding the bike, not doing as much walking at therapy or at home and I have more tone than ever. Used to be that a urinary tract infection would do it and a round of antibiotics would fix it. I don’t have any symptoms of a UTI. There could be something  going on with the prostate but how do you tell if that is happening other than a biopsy. I am at the maximum of the anti-spasmodic drugs and I know that SCI patients after 20 years or so get baclofen pumps to inject the drug right into the spinal cord. Not something I am looking forward to. My muscle tone never used to get this bad after exercise. 

Perhaps, it is the progression of the condition or maybe there is something else going on somewhere that is causing all this tone. Problem is none of the Drs. know what is going on, I guess Dr. Steen has to figure it out himself. I will start with my bowels as they are central to everything even in able bodied people. I think the first thing I will ask for is a colonoscopy to see if there are any problems up there. I know my butt tightens up and it is painful and that may cause the tone and then it becomes a vicious circle tight butt...pain...more tightness...etc. Just don’t know what to do and I certainly do not want to sit in bed all day.

Thanks for listening...