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...