november 10th- november 24th

Nov 10 to Nov 24, 2013

The week of Nov 10 to Nov 17, going to Parkwood for the Treadmill Program. They worked me very hard both on and off the treadmill. The focus being that I walk straight up without my bum sticking out. It is difficult. The left ankle doesn’t bend and I stand on my toe that makes me lift up in the air. If I go flat footed on the left, it makes my butt stick out. Every night after Parkwood my nose plugs up tight and doesn’t clear up until after bowel care.

The ol’ bowels really control my life. Bowel problems tend to get me anxious which starts the BP going up and getting sweaty etc. Impacted bowels shouldn’t bother me now as I know that we can always work it out but not with a pencil...ha!  It is a painful process but it works. The laxatives seem to be working. One reason that I get impacted is the bowel doesn’t contract properly. With the laxatives I can feel my intestines contract. Normal bowels have peristalsis which moves the material in the right direction in my neurogenic bowel it all contracts at once and it feels very strange but it works.

Monday Nov 18^th: An assessment day for the locomotor program. Stood for 2 minutes, stood for 10 seconds with eyes closed and stood for 1 minute with my feet together which is the tough one to do. Then it was walk time. Walked the length of the gym which is about 50 feet then had a rest and it was up to see how far I could walk in 6 minutes. After a rest it was up and at ‘em. Got 109 feet and I was so pooped the Barry, physio assistant had to catch me. I wasn’t thinking about standing and my legs just gave out. Onto the treadmill for a short session. Was able to do one session for 7 minutes. Then off the treadmill and headed home.

My nose didn’t plug up until I got home. Now, here’s the funny thing about how the ol’ body is wired. At about 5:15 my nose was plugged shut and no air could get through it. Went to have a pee and as soon I started peeing my left nostril opened up completely and stayed open for about  5 minutes and then plugged up again. What’s that all about...eh??

After all that exercise it tightened up the entire body, there was no BM...Yup it even tightens up the bowels...and that is with all the laxatives and a suppository...aka...the Silver Bullet, I am taking.

Tuesday Nov 19^th: Still hadn’t had a BM. Put on the Depends, just in case and cancelled Parkwood as I can’t predict what could happen.  As per usual nothing happened all day. Just waiting for the evening’s BM. FYI... It all came out ok...lol! A relief!  

OH yes, I started painting again with acrylics. Colour mixing is very hard to do...something I’ll have to learn again. My right hand is a bit shaky. I won’t be able to do any fine detailed work but I’ll just have to learn some new ways to put paint down. There is a lot of beginner videos on painting online...I’ve watched a bunch trying to find a technique to use. What got me going on painting again was a picture that Bryce took of Lake Lisgar at sunset. I saw it and said I’d like to paint that. I have some acrylic paint that Dawn gave me way back when in Toronto. Kelly had left all her paints here but some were very old in lead tubes...Yikes! Went on excursions to Curry’s Paint Store in London for some paints and brushes. I painted a glass milk pitcher and that’s when I found out the ol’ hand isn’t to steady for any detail work. I covered the pitcher with a coat of grayish paint and now I have another canvas to paint on. That’s the nice thing about acrylics...they dry fast and you can cover up mistakes. It’s going to take a big learning curve before an attempt to paint Lake Lisgar. Must remember how to mix colours...hard to get the right mix...practice...practice...practice!

Wednesday Nov 20^th:  No therapy today. Went in the pool with Yonna. It was a good workout. Just took it easy in the afternoon. Did some painting...going to try the pitcher again. Everything came out alright at 8 o’clock...

Thursday Nov 201^st:  Last day of the Treadmill program and last day of assessment. Woke up at about quarter to 3, my lower abdomen was aching, a strange feeling. I don’t know if it is a bladder or a prostate problem or because of all the tight muscles. Rather than have Dr. Steen get me all worried, I’ll go to the real doctor on Friday. In the morning!

I was all toned up and it was difficult moving around and I was leery about doing the assessment. Well, when I got to Parkwood and started doing sit to stands. I had one of my better days on the treadmill. They do what is called phasing. Have the treadmill running at .8 miles per hour and they slowly take hands off. On the treadmill, there is a physio holding my pelvis and keeping it in the right position. They stop supporting my pelvis and I walk unsupported...sounds easy but I must pay attention to every move or I’ll start swinging in the harness. Test 2 is removing hands from my legs and feet. I can get down to them holding just my toes.

The walking after was also pretty good. I walked about 110 feet with little assistance. There was a physio on either side, just in case but even when I stumbled when I catch my toe, I was able to correct myself and they didn’t help me. They videoed the walk and they showed me a video of me walking in a highboy walker last January. There were 3 physios helping me and I had my arms braced on the walker. After watching both videos...I have improved, if I do say so myself...yeehaw! I need to get the confidence to walk on my own. Still have a lot to do to walk properly. Must step over my left leg...I still tend to let that left hip stick out. Since I sit so much, it is difficult to straighten out my back. I walk bent forward. It feels straight up but when I see myself in a mirror, I am definitely not walking straight up. Walking bent over causes lower back problems...grrrrr!

Found out I’ll be going back to seeing Stephanie twice a week on Tuesdays and Thursdays at 11:00. That works out well, I can do the gym on Mon, Wed and Fri mornings with Grandpa, in the pool at noon with Darcy or Yonna and ride the trainer in the afternoon. Should be able to build up some endurance with that program.

Friday Nov 22^nd:   Went to the gym for the first time since the middle of September. Darcy came along with Grandpa and I. Got into the gym and got the coat and sweater off and walked to the leg press machine. Did very light sets and only went up to 50 kg. Did 3 sets of 10 on each leg. Did 3 sets of 10 of toe presses to strengthen the calf and to try and stretch the Achilles on the left leg. If I can get some flexion in that ankle it would be so much easier to walk. Walked to the leg extension machine and did 3 sets of 10 reps at 20 kg with each leg.

Moved the chair to the pulley machine and walked to the chair and did a bunch of sets on my arms. I may be a little sore tomorrow but I did take it easy...much to Darcy’s surprise!

After the gym it was home to get into the bathing suit to go to the pool. Darcy took me and stretched out my arms and legs. Did some walking without assistance and not hanging on the wall. I am able to catch myself if I lose my balance and as a safety precaution, there is a float around my chest...just in case. Felt good getting into the deep end and getting the legs moving after doing the weights. I do some exercises at the stairs, I think one day probably when Yonna is with me I’ll walk up the stairs at the pool.

In the deep end I can work on a lot of muscle groups in my hips and upper legs. A big problem is that I have a lot of difficulty lifting my left foot off the ground. It is good exercise in the pool lifting the left leg up.

Saturday Nov 23^rd: Got to Karate class. 79 year old Frank was there doing his stuff...he amazes me. Missed 3 classes, it was good to be back. Did two walks of about 50 feet in the Dojo. Out for lunch at Cultures.

Sunday Nov 24^th: Coffee with the guys at McDonalds. Amazing how the clientele at McDonald’s has changed. Not too many kids anymore, the parents of Gen-X and grandparents of Generation-Y or just a bunch of old fogies drinking coffee with free refills! Did you hear some places are stopping the seniors discounts because the seniors for the most part have all the money...and so?????

How am I feeling?

Yikes my claustrophobia is back or at least on one occasion. We were going to get the car washed at Pioneer on Simcoe Street. The lane to the car wash goes behind the station and is narrow with a wall on right side. There were 3 cars in front of us and when we pulled in behind the last car and I looked behind and then it hit, an anxiety attack about being trapped. I could feel my blood pressure go up and I ‘asked’ Darcy to back up and get out. She did and once out I was alright again. Then I feel foolish as I know it is all in my head. For a while I could control them but this one got away from me. I had one last week in Ingersoll. In a line up for gas...just had to get out.

I was going to take part in a study in Toronto for a Functional MRI. They would tape sensors to my hand and then they would put me in the machine for ½ hour and have me tell them every five minutes what I was feeling. They have the sensors taped to specific nerves in the hand and map the nerves in the neck that run the hand. It would be 3 half hour sessions in the tube. For those of you who don’t know about MIR’s, they slide you in a tube with the top of the tube being about 3 cm from your nose. It is so noisy in there they put on ear protection. When I signed up I thought I’d be able to do it but the more I thought about it the more ‘frightened’ I became, and I cancelled.

It appears that it is time to call the mental health nurse and find out what’s going on. I am having an MIR on my right shoulder on Dec 7^th in London. Another MIR on my neck on, get this date, Friday, Dec. 13th...damn, I’ll miss Pt. Dover. Darcy already has the Ativan for that event. I couldn’t use Ativan in Toronto as they needed me lucid to answer questions and feel the sensors.

Thanks for listening...

Monday November 11

Sorry about the delay...messed up my passwords and couldn’t get into my blogspot account. Meghan can get in so I emailed this to her. This one is short to make up for all the long ones.

Oct 14 to Nov 3, 2013

Yikes this is the first time I have not written down notes for every day. This may be a short blog…we’ll see. The past 2 weeks have been the same drill as usual, Mon, Tues, Thurs and Friday on the treadmill. Wednesday’s in the pool. But that didn’t work out. As mentioned previously, my lower bowel tightens up when I have a lot of muscle tone and it makes it very difficult to fart and poop. If I don’t have a BM at night I have some Diarrhea the next morning. I put Depends on just in case and I don’t go to the pool in case there is an accident. Missed both pool dates because of it. Even missed the Sunday pool days as well...a big…..grrrr. Missed the wedding of one of the Karate kids…gee how fast they grow…

I do the treadmill for an hour which incorporates walking sessions from 3 to 5 minutes and lots of stepping training and turning around by moving my feet and not shuffling them. Seems I try and stand on my leg before it is ready to take the weight. Must think every time to get the leg ready to take the weight.  After the treadmill it’s overland walking with the walking poles held horizontally or in the bungee walker. These walking sessions tire me out quite a bit and I am just fried after walking. The biggest hindrance to walking is that my upper body is so ridged/stiff/toned, it makes walking difficult. I am on the maximum amount of antispasmodics so I will just have to put up with what I have. The frozen left ankle and a poor moving left hip don’t do anything for my range of movement.

Missed a couple of days on the treadmill just because I had so much tone I couldn’t walk. On those days I’d go to Parkwood and not go on the treadmill and Barry would do some aggressive stretching that helped loosen me up bit.

After the last rant in the last blog about disreflexia and muscle tone we finally figured it out. On Wednesday night, Oct 30, at 8 PM, I couldn’t have a BM. I was feeling very uncomfortable as nothing would move. Blood pressure was getting up into the 150’s/100 so it was time to hit the hospital. Got there at 8:30 and was moved through quickly. I explained the problem and they took an X-ray that proved what a lot of people have said for a long time…I am full of shit! Seems my entire colon was full. Once they determined that, the Doc, who by the way was excellent, came in and said he would leave me in the capable hands of an enema nurse named Connie. I have neurogenic bowel which means I have trouble storing and removing poop. If you want to read more: http://medicine.med.nyu.edu/conditions-we-treat/conditions/neurogenic-bowel#definition

Well, she started. After about 3 tries and 2 bags of enema stuff and drinking 2 glasses of laxatives she was able to get some out but I was still impacted. You have to be a special person to look after impacted patients and have the title of ‘Enema Nurse’. Nurses are very special people.  At 1:30 AM after several attempts, they said needed time for all the stuff to work and I could stay overnight or go home. Chose to go home and wait for it to happen. Nothing happened until 7:00 AM and again at noon.  Oh what a relief it was. Thought that was the end of it but the Doc did say I would see them again…I thought I was done.

Dr. Steen thinks this may have been the problem all along causing my tone, causing the dysreflexia, pain in the bladder and in the prostate for the past weeks and even back to August. Can’t believe how much a full intestine affects my body. The problem is that all the muscle relaxants that I am on also relax my intestines so they don’t contract and move the stuff along. It all just sits there and causes me grief. The solution to the problem is to take more stool softeners and laxatives to stimulate the ol’ bowels into moving. There is a fine line in how much I should be taking…too much and it goes the other way. It is going to be by trial and error. The laxatives are on top of all the fiber that I eat throughout the day. At breakfast, for example, I have mini shredded wheat which has no salt or sugar in it. I add bran buds, hemp hearts, flax seeds, sunflower seeds and raisins plus prunes. Y’d think that’d be enough fibre. But it I guess it isn’t. I figured the fibre would work and I wouldn’t need the laxatives.

I was able to attend the Cycling Club’s banquet on Saturday night. Jeez, I’ve been away 2 years and I didn’t recognize half the people in the room. Good meal of the normal Belgium Hall fare, Fried chicken, cabbage rolls and a chocolate Sunday.

On Oct 25^th I had an appointment with a hand specialist. The Resident came in and did the preliminary examination and said they may be able to get me more movement if they moved some tendons around. The Doc came in and said they couldn’t do the tendon transfer as I had too much spasticity in my hand. In fact it would give the opposite effect that would want. Both Drs. Were excellent but what else would you expect from 2 avid cyclists.

Sunday night it was back to the hospital for another dis-impaction and 2 enemas. Another X-ray showed that there was still a lot left to move…I’m only half full of it now…Ha! The Doc recommended that I up the laxatives for a while. I am taking 2 tablespoons of Milk of Magnesia, a table spoon of Lactolose, 2 teaspoons of RestoraLax, 4 tablets of Ducocet, 2 tablets Senecot plus all the previously mentioned fibre. Should be able to poop through the eye of a needle with all that stuff!

How am I Feeling?

Feeling good that we may have solved some of the muscle tone problem for the time being. Now it is a matter of time before it is resolved. Since I have been on the treadmill program, I stopped riding the trainer and lifting weights. Those two activities got me to where I am now and I would really like to get back at them. I think there are 10 sessions left on the treadmill. The treadmill program has been sort of hit and miss, I missed some and the staff missed some and I wonder if missing sessions defeats the purpose of building new pathways. Guess we’ll see.

I must consciously remember to take the weight off a leg before trying to move it and that is very hard to do! Can’t walk if I don’t do that...must also remember to look up, keep chin in, shoulders back and down, lead with my belly button, stand on my leg while the other one is taking a step, keep my left hip forward and keep my back straight. It is difficult to think of all of these directions when stepping, but if I don’t walking becomes very difficult. Supposedly if I keep walking my brain will start doing it again subconsciously...here’s hoping. I have developed to very bad habits I tend to look at the floor right in front of me and second, I use my left shoulder to do everything. When the left leg won’t move I lift my right shoulder to try and get it up. That’s the pathway my brain has figured out, now I must break that habit.

Thanks for listening…

Sept 30 to Oct 13, 2013

Sept 30 to Oct 13, 2013

Again, no therapy on Monday….grrrr. I just figured out why my right leg was giving out. Last couple of times I was at the pool there were no males around to push me through the dressing room so I propel myself with my right foot forgetting that it stresses the hamstring. That’s why the right leg was giving out when I was walking, the hamstring was fried.  Here I was thinking my good leg was getting weaker. Went to the pool and had another good session. 

Got a call on Tuesday morning that physio was canceled as there was too many staff away sick. That will be 7 days without therapy. Went to the pool again and all the regulars were wondering what I was doing there on a Tuesday. Going to give the bike a rest for a week just to see if that relieves some of the muscle tone which may improve my walking…we’ll see!

As mentioned Shannon wants me to stand and do things with my hands. I started by standing at the sink and rinsing the dishes. I can see why she wants me to do it. When I am working with my hands, my brain has to keep my balance without me actually thinking about it. It is interesting as I can feel the muscles in my legs contracting and letting go to keep me balanced.  It is similar to standing with your eyes shut. Here’s a picture of me standing brushing my teeth… see no hands...note the bum is out just a bit.

Wednesday it was off to the pool. Yonna was going to take me but she was coming down with a cold and didn’t want to give it to me. Darcy took me and we had the usual workout for about an hour. Jeannie was on for a massage at 2. She worked on my back and left leg. Jeannie does an aggressive massage and there is a certain amount of pain that goes with it. About ½ after the massage, my back started hurting and I had nasty bout of dysreflexia. The blood pressure was getting up to 165/106 and this happened several times. It just feels horrible. I’ve been having a massage at home for over a year and it has never bothered me in the past. Just wondering what’s changed? The massage seemed to have the opposite effect in that it tightened up my back way too much and then it wouldn’t relax. The dysreflexia got worse and I had several episodes. To top it off I didn’t have a BM before bed which increased the chances of dysreflexia. I finally got to sleep after 12 and was up at 6:30. In the morning, I spent most of the time sitting on the can while the PSW was here. She said she would come back and dress me after her next client…what a nice lady…no…she is a very, very nice lady! After dressing, I tried to eat breakfast and could only eat half the bowl….woops almost but an ‘e’ in bowl!

Due to the chances of having a bowel accident, it was on with the Depends for the day. Was going to go out for lunch with Sensei ML but I had to cancel that….big grrrrrr! I have never had my back this tight. It just won’t relax. Seems when I stretch it gets tighter. Last night when my back tightens up my butt tightens up and I can’t poop. I haven’t ridden the bike this week and have just been in the pool 4 times. I have been doing more kicking in the deep end. Hopefully that isn’t causing the problem. A big catch 22, if I work out I tighten up and get dysreflexia…if I don’t work out, I get out of shape. I haven’t been to the gym since I started the locomotor program. Just sitting here typing this on Thursday morning, I am tightening up just sitting here. 

Holy shit! Was Thursday ever a bad day. Had to go to Parkwood for 1 o’clock. On way up I started feeling strange. We arrived a little late but when I told them my problem, they took my BP and it was up around 165/110. They did some stretching but decided it wasn’t a good idea to do the treadmill with elevated BP. The BP wouldn’t come down so they called Angie who is the Physiatrist’s nurse. She came over and checked my bladder with an ultra sound and it had 500 ml in it. Way too much. According to the Dr., if I were a normal person had that much urine in the bladder it would be very painful. I had the dreaded catheter put in and drained the bladder…yikes I don’t like those things. The BP went down a little but then went back up. The Dr. said my pain will cause an increase in BP. Back to the hemorrhoids, No preparation H so Ange put some freezing on them. The BP was hanging around High 150’ and 160’s and even up to the 170’s. They say I have some pain somewhere that is causing it. The Dr. said it is usually visceral…i.e. intestines, bladders etc….but they don’t know what it is.

Got home and the BP was up in the 172/110…now that is a little scary. The PSW comes at 8 o’clock and Darcy put the silver bullet in at 7:30. I was very worried that there wouldn’t be a BM. Well got on the can and it happened almost right away…yeehaw. Got back into bed and checked the heart rate…it was starting to drop and got down to 126/80.

Getting ready to watch the hockey game and my legs stared burning and I had to get up and go for a spin in my chair. Don’t know why that helps It was 10:30. I asked Darcy to change the flannel sheet to a cotton one. Then got into the chair and went out into the garage…and back in and started writing this. Should go to bed as we are off to Hamilton in the morning to see the urologist. Perhaps he can figure out what is hurting down there. Oh yes, when Ange put the catheter in she said the sphincter muscle was very tight and that’s why I couldn’t pee on my own. I just peed now, that is another… yeehaw. Short lived relief as after my trip to the garage my BP was up in the 150’s/110 again.

On Friday morning my BP was up in the high 150’s again and not feeling good at all. Couldn’t eat breakfast. Muscles were so tight over my stomach, I just couldn’t put any food down.  Got into the car and headed off to Hamilton. It was a little rough but we made it. My family Dr. had upped my Flomax to .8 mg/day and the Urologist agreed that an increase may help me peeing. I see him again in 6 weeks to see if the Flomax is working and if not he’ll put me on something else. At the hospital, I peed but only 250 ml which means the bladder still has lots of pee left in it. For a few minutes, the pain seemed to subside and I was able to move around easier, the back and tummy muscles relaxed noticeably. The good news at the urologist was my PSA was down to 1.76, down from 4.5 when I had the prostate infection. 

On the way home we drove through Brantford and past the trails at the bridge over the Grand and past the trail that I took on Aug 20…that didn’t bother me but I started thinking that I will never be able to ride them again and that was a little depressing. I then started thinking, what a great time it was riding on the trail and yup that started me feeling better.  I guess the moral of the story is never look back, you can’t repeat the past…just keep moving forward….cherish the memory.

Went to see my family Doc about my dysreflexia. He adjusted some of my meds. Upped my gavapentin and gave me some other drugs to help alleviate anxiety when I have a high blood pressure attack. This has to be the worst pain day I have had. I have to fart, but can’t and there is a build-up of gas but my intestine is so tight can’t get it out and my ureter is so tight I can only pee 100 ml at a time. Last time I tried there was a lot of pain when the sphincter tried to open and the pee dribbled out. Oh great, just had a pee and it is full of blood and it is very painful and I only peed about 50 ml. Guess perhaps a trip to the hospital to get an ultra sound on the bladder just to see how much is really in there. Now I have the urge to pee about every 10 minutes and all that comes out is about 10 ml of blood. Getting a little concerned. 

At 10 o’clock on Friday night we went to the hospital because the blood wasn’t stopping and my blood pressure was bouncing all over the place. One reading was 192/110 and with bloody urine it was time to go. At the hospital, they got the ultra sound ‘pee detecting unit’ but according to the machine, I had no bladder. I did have a pee of about 200 ml and it was the first time there was more urine than blood, a good thing. They found another ‘pee detecting unit’ and a new nurse and she did find my bladder (a relief to know that I have one…loll!) and there was 108 ml left in it, which is good. However, before we left, the Emerge Dr came in and gave me a prescription for CIPRIL, an antibiotic for my bladder infection.  What...a bladder infection??? That explains all the muscle tone which causes the dysreflexia that causes the heart rate to go up which causes me to feel crappy and it makes me whine a lot. I didn’t have any symptoms no cloudy urine, no real burning, no smelly urine. I’ve probably had it for a while which explains some of the walking problems on the treadmill.  Took a Zopiclcone to get to sleep and slept from 1:00 to 6:30 when the PSW arrived. 

Saturday, we were supposed to be attending Laura and Jeff’s wedding and reception. I feel very bad missing the wedding as I have watched Laura grow from a little white belt kid to a lovely woman and a Black Belt. Sorry, I won’t be there on her special day! But Sensei Bill, her Dad said he’d save me a bottle of wine so not all is lost.

Saturday was a rest day, in the chair writing the blog and in bed watching TV. The muscle tone is bad and my trunk is tight, legs and the hamstring on the right leg almost feels like it is cramping. Even the arms are tight and feel very heavy to move. Took the antibiotic. Just hope the bugs are susceptible to CIPRIL. The lab at the hospital will type the bacteria to see what it is and what antibiotics will kill it.

It is too early to tell if the anti-b is working, although my legs don’t feel quite as tight. Upper body is still tight. Took a Zopiclone again and slept right through ‘til 4:45.  

Sunday was uneventful. Two days of anti-B’s haven’t noticed a lot of change. Still blood in the urine and I have to pee a lot and still only 25 to 50 ml each time. It still is very painful to pee.

Monday morning, still lots of blood, still painful, still only 25 to 50 ml, still frequently with a lot of urgency and only dribbles. Even with the painful pees the blood pressure is staying down. I don’t get it. 

Tuesday morning, woke up tight but there’s hardly any blood in the urine but it is still painful to pee and gets shut off after about 50 ml. Dr. appointment at 1:00. I was feeling shitty but my BP was not up. They really had no explanation of what was happening so they gave me more drugs… MORE DRUGS!!! Just what I need. Tsanidine is a drug for muscle tone but it makes you tired. I start with ½ tablet for 2 days and increase to a full tablet and then if I am not falling asleep they will increase to I ½ tabs.

Then it was off to physio at 2:30, I was so tight there was no treadmill. Barry gave me the best stretch that I have ever had…and that is ever had. He even got my tone down to something reasonable. My stomach muscles were actually soft and relaxed. He started by putting a half roll at my lower back and laid me over it. He then put 4 soft 3 inch balls under my neck, and under each shoulder blade. While I was in this position he stretched my legs and the students stretched my arms. He then removed the half roll as another patient needed it and he put me on 4 more balls. I was actually lying on 8 balls. He got me up into sitting position and pushed my trunk forward which stretched out my back. Felt good.

I think I have figured out part of my peeing problem. Now remember this is Doctor Steen speaking and he has been wrong before. My Flowmax was doubled to 0.8 mg per day. It has the effect of opening the bladder at a much lower pressure, therefore it stands to reason that I would be peeing less volume and more often if the bladder voids with less in it. That is why my BP hasn’t been going up and no dysreflexia because my bladder is empty and not getting overfull... Does that sound reasonable?

Off to the pool for the first time in a while. My midsection and back are tight but we’ll see if the pool helps relax them. The water felt good and Darcy worked on my arms and legs. She put 3 super dense noodles under the small of my back and helps to keep lying flat. I have a float around my chest and one of those air filled travel collars around my neck that keeps my head up.

Yikes…Wednesday night was a very tough time. I had no BM, as my butt was too tight to poop and that always causes me grief. This may be too much info for some but here goes. When I don’t have a BM, the suppository doesn’t get ‘flushed’ out so some remains and starts to burn.  That burn causes muscle tone, you know the drill, it makes everything tingle, neck tight and the most aggravating is my nose plugging up for hours. This may explain some of it but not all of it. Darcy got me out of bed at 11:30 and I stayed up in my chair for an hour…that seemed to help, unfortunately watching my Has lose to Calgary…didn’t help!  The strange thing is, although I was feeling like crap my blood pressure was low at 119/74...what’s that all about? 

Went to therapy on Thursday.  They worked me on the table for ¾ of an hour then got me on the treadmill. Shannon didn’t think I was that tight and my walking wasn’t all that bad. I felt ok but my nose really plugged up on the way home. The nose stayed plugged until 8 o’clock when I had a pee. Did you get that, when I pee my nose unplugs. Is my nose connected to my bladder somehow???? I was tight all night. Got up Friday and I was still tight but feeling better. I think the anti-b’s are working on the UTI.

Friday got to go in the pool with Darcy. Felt very good. Got some good stretching done and kicking in the deep end. Starting to feel better. At the pool, I met someone that I went to high school with. He spent his life in Connecticut and is now back home…I would never have recognized him.

Did the Karate class today and ran the class, thanks to Sensei John for letting me take the class. A bit of the problem is the fact that I am not doing the exercise so I don’t know how tired they are getting. It is hard verbalizing what I want done rather than demonstrating. Made it through and my voice held out for the whole hour. Got home and did 6 k outside on the trike. The shorter cranks helped as there was a lot less knee pain. Strange that the crank is 3 mm shorter than the other set and it makes that much difference.

Well Sunday was a real pain. Darcy took me to the pool and it was almost empty.  For some reason my lower bowel tightened up and I can’t fart. The gas builds up and causes more pain and makes the bowel tighter. The BP is up to 148/95. Just wait until it loosens up. Darcy thinks it is from riding the trike too far. She wanted me to do 1 lap but we did 2. I felt good at the end of the ride.  I sit here typing this on Sunday night, my right leg is tightening up and my hamstring is in a knot, my arms feel tight sand everything feels heavy to move and the whole body is tingling.

Managed to have a BM with a lot of help from Darcy…’nough said! We decided to stop the nabalone, a muscle relaxant which we didn’t think was doing anything…maybe it was! We’ll start it again and see what happens.

How Am I Feeling?

This dysreflexia has got me worried a bit. My BP going up to the 160’s and 170's and the diastolic going up over 110 to 120 can't be that good. The Dr. said it is not in the stroke range. It’s a real bummer if I can’t exercise for fear of getting Dysreflexia. A bummer that last week went so well and now completely the opposite for these 2 weeks. Guess if I was from Great Briton, I’d have said a ‘fortnight’ instead of ‘2 weeks’. Is that correct Sensei Calum? 

What the hell is going on??? They have said I haven’t stopped changing…I thought the changes would be for the better…not for the worse.  Or maybe it is just a short term thing, and it will get better. Since I can’t feel some of the pain for example, when my bladder is overfull, even though I don’t perceive it as pain my brain still can get the inputs and it does its thing such as high BP, stuffy nose, tingling, muscle tone and anxiety.

When I was doing weights in the morning, swimming at noon and bike ride in the afternoon, I never felt this bad. I haven’t been on the treadmill for a week, haven’t ridden the bike or lifted weights. Couldn’t figure out what was happening. Perhaps by the end of these two weeks it will be all gone. I have this very bad habit of over reacting and thinking I will be tight like this all the time now…I don’t take into consideration that it will get better. Seems bladder infections mess up a lot of things and I need to stay calm…they will go away! 

Called my quadriplegic friend, Etienne. He rode Darcy's trike on a Wednesday and went to Grand Rapids the following Wednesday and bought a trike and he sounded very happy with it. He also got a set of rollers and he'll be able to ride it in the house all winter long....aaaannnndddd...we will now be able to race…

Thanks for listening….

Sept 16 to Sept 29, 2013

Sept 16 to Sept 29, 2013

Yikes, second day on the treadmill didn’t go all that well. I just couldn’t get into a walking rhythm. Seems the left knee would not bend at all and the physios had to work very hard to keep me walking…they called me peg leg…arrrr! There was a physio filling in for Shannon and she thought it was her fault that I wasn’t walking well. It was just the fact that my left leg wasn’t bending. They even went and got Shannon to come and see what was wrong. I only walked for 4 sessions of 2 to 3 minutes when I should be going for at least 5 minutes. By the end of the session I was all sweaty and just pooped! Not good day at all.

My tires on the manual chair were soft. I asked the Sarge to pump them up. They are Bicycle tires but a very strange size. They are 25 inches. Well the Sarge read the tire and they can be pumped to 80 to 145 PSI. We decided to put in 100 PSI. We got the air in but then there was a little pop and SSSSSSSSSS and the tire went flat. We took the tire off and found there was no rim tape on the wheel. This means the tube had an aneurism in one of the spoke holes.  Since I didn’t have a 25 inch tube to put in we installed a 26 inch one and folded it up a bit. I wouldn’t ride a bike with a tube that is too big but I’ll take the chance on the wheelchair. Took the chair back to the store, seems the Sarge read the wrong number and it is actually a 24 inch tire. As for the rim tape they said sometimes they come with it and sometimes they don’t. You’d think they’d check it…eh?

What a difference a day makes. The treadmill went a lot better today, Tuesday. Before we started Barry and the 2 students did 15 minutes of ‘aggressive stretching’ that got me loosened up a lot. The left leg wasn’t as stiff and I was able get a rhythm going today. Maximum walk time is 4 minutes. Want to get that up to 10 minutes before the end of session 22…the goal!

After the treadmill it was overland walking with a difference. Instead of me hanging onto a walking pole, the poles were horizontal, one on each side with Shannon holding them in front and Barry in the back. While hanging onto the poles they could move my arms in walking motion…first time that’s happened for quite some time…well about 25 months. Every step Shannon made sure I was pushing my left hip forward and standing on my left leg. She wouldn’t let me take an improper step. It is hard work keeping the hip forward but now I can do it most of the time but I must think every step about pushing the hip forward. It is amazing how much better I feel after a good day of therapy vs a bad day…I  know it shouldn’t but it does…sorta like doing a good Kata at a tournament and you know it was your best and it really doesn’t matter where you place….or surviving a session in Bruceter’s Corner. Karate guys will know what that means.

Wednesday in the pool for a1¼ hours. Lots of good stretching and walking. In the pool it is easier to take longer steps. The hamstrings feel very weak after they are stretched…it is a weird feeling. Got home and went on the trainer and rode 13.4 k’s. Good ride and felt strong. Did a little stretching after and there was no AD and my nose isn’t plugging up completely…won’t get too excited about that yet?

Ye know, I think I have a very strange dog. When I feed her, a few pieces of her food land beside her bowl she always eats the ones outside the bowl first…very tidy. At about 7:30, she gets Darcy to put her in her cage, she gets one cookie and we cover the cage with a black towel and she stays there until 8 in the morning…very strange!!!!

No therapy today, Thursday, I think all the physios were away. Just meant another day in the pool. Walked 15 meters a couple of times and then into the deep end for water walking. Some good news. I sent a letter to the Program Manager, the Director of Parks and Recreation, and the Mayor explaining that there is no place for me to change after the swim and for other handicapped patrons. Last winter it was a touch chilly getting into the car with a wet bathing suit. Sent the letter on Tuesday and the Program Manager had a solution on Wednesday. We can come in the back door, go down in the elevator and go through the health club and then through the men’s change room but I need one of the staff guys to push me though the change room. Methinks I can get through on my own as the floors are very smooth and it is easy to push the chair. To move the chair, I pull with my right foot and push with my right hand. I can keep it straight that way. The staff were very accommodating. Did 12.5 k on the trainer when I got home.

Friday, I had a great day on the treadmill. I was able to keep my hip forward and really stand on the left leg. Shannon called Stephanie, my previous physio over to watch me walk. I was between the parallel bars, hanging on for dear life. They pry my left hand open and it clamps on the bar and then they peel it off the bar. Using the bars and a 6” step they had me stepping up with my right foot while standing on the left keeping my bum tucked in…yeehaw! My brain has to pay attention all the time. I sometimes try to move the leg that I am standing on and then wonder why I can’t move it. On the way home Grandpa Bob mentioned that my nose wasn’t plugging up but as soon as I got into the house it was plugged up tight and it stayed plugged for about 2 hours….grrrr!

Saturday there was a good Karate class. Did 2 walks after the class. I was thinking that on Friday it was easy to keep my hip in because I was hanging onto the rail with my hands. Today I was able to walk and keep my bum in so perhaps I have overcome that hurdle. We’ll see by the end of the treadmill program. Thought I was having an AD attack when I got home as I had a little head rush so Darcy checked my blood pressure, it was 129/90. 90 is a little high but will check it again and see what happens.   Did 12.8 k on the trainer and did a light weights workout for 45 minutes…we’ll see how I am tomorrow. Need to get my endurance up so I can walk further at therapy.

Last Monday was a loss on the treadmill. I couldn’t do anything. This Monday was great. There is no explanation.I was able to walk and got up to 4 minutes. Then I got off the treadmill and walked overland attached to a walking machine. I am on wheels with straps around the legs…Easiest way to describe it is a walker that I can sit down in if needed. It works great as I can catch my balance if I go to fall. I was even kicking a ball. This helps my balance as it requires me to stand on one leg while using the other. Gets my legs doing different things which my brain has trouble doing. I now walk keeping my butt in for the most part. Shannon says it is my brain that has created that pathway. I say I now have enough strength in my core to keep the hip forward…hmmmm…Shannon is the physio so who’s correct. It was a hard workout and I was sweating a lot. My legs, back, neck and face were all tight when I finished. I figured my nose would plug up on the way home but it waited until I got home and 9:15 and woke up at 10 feeling very strange with my quads burning, my ears ringing and getting sweaty and anxious…yup dysrefleia. I was very uncomfortable for about ½ hour. Darcy took my Blood pressure and it was 155/106. In half an hour it was down to 129/86. As dysreflexia is caused by pain, I was assuming that it was the pain in my legs causing the problem. The only way to alleviate the pain is to take pain pills…I guess it worked. Just wondering how worried I should be about the high BP? I am sure I got it up a lot higher during sparing in Karate or bike sprints or cranking it up on the cross trainer when my heart rate was up around 170. Perhaps that is a question for the Doc at my next visit.

Shannon asked how I was after my hard workout yesterday. I was very tight and had some dysreflexia.  Her comment was we probably went a little too hard yesterday but we went ahead and basically did the same workout again. The nose plugged up at about 5:30 and we’ll see what happens with the other stuff. Just wondering if I can build up some tolerance to dysreflexia?  Just keep doing it and perhaps I can workout longer without it happening.  We’ll give that a go. Right now I think it’s the harder I push the worse the dysreflexia is. For example I can ride the bike at tension 3 to 5 for 40 minutes and not have nose plug up or the BP go up. If I put the tension up to say 5 to7, I suffer big time. Hmmmm…what should that tell me…eh?

Tuesday night went well. No aches or pains and no problems all night. Stiff as usual in the morning. Had arranged to have breakfast with one of my old cycling buddies, Etienne. He fell off his bike and broke his neck almost a year earlier and about 100 metres from where I crashed.  He has different problems than I have. For example, his upper body is always warm to hot and his legs are cold all the time. My body is different temperatures all the time. Sometimes my legs are cold and the feet are warm or one foot is cold and the other is warm. We had breakfast at the Tillsonburg Airport. Nice having breakfast watching the planes land and takeoff. There was actually one of those small private jets from the states that landed. After breakfast we got Etienne to ride on Darcy’s trike….I think he will be getting one. Good to see a smile on his face after doing 2 laps of the crescent on the trike.

Shannon suggested that I take it easy on Wednesday to see how well I function on Thursday. Just did 45 minutes in the pool, then a massage by Jeanie at 2:30 and that was it. For some reason my back was very sore and I was concerned about the treadmill. Barry did some very aggressive stretching when I got there on Thursday, to get me loosened up…and it worked. I am up to 5 minute walking sessions on the treadmill. The goal is 10 minutes by the end of October. Got into the walking device again and did some laps of the gym, walked backwards and played some soccer. Moving around correcting balance while kicking the ball are all very good for getting the legs moving independently…it pooped me out.

There was no therapy on Friday. I rode the trainer for 12.6 k in 40 minutes. Didn’t do any walking. I try to get out of my chair every hour to stand and just to get out of the sitting position. Don’t always stick to that timetable.

Saturday, went to Karate class as usual and I walked across the gym and back for a walk of about 30 m. For some reason I was a bit unsteady and they had to catch me twice. My right leg, the good one gave out twice and Sensei Willmott had to grab me both times to keep me from falling…yikes! Did a 40 minute bike ride when I got home and pushed it a bit. Did some good spinning and then I paid for it. My back tightened up and my nose plugged up and I pretty much felt like crap…but it was worth it…got 13 k in 40 minutes with the highest RPM’s to date…64 RPM! Had to get up at night for a BM which means waking Darcy up at 2:30.

Off to the pool on Sunday morning for a swim. The pool loosened me up a little butt the back was still sore after the swim. Down to Cultures for a coffee and then home to rest.

The new shorter cranks had arrived on Thursday and Terry came over and installed them on Sunday afternoon. It is a triple chain ring and Terry couldn’t get it to shift properly.At 3 AM when I woke up, the light bulb came on the front derailleur is for a double crank not a triple!

How am I Feeling?

Strange that I get on little plateaus and then I get off them and start upwards and then I plateau again. Couldn’t keep my left bum in when stepping and have been on that plateau and as of Friday I am able to keep it in a lot better…it still pops out sometimes. The work I have been doing in the pool, I think is paying off and the weights and the treadmill and the bike are all helping. In the pool when I step up on the first step and hold my bum in with my hand on the rail. Water walking in the deep end also helps as I can practice bending my left knee. It is very stiff but I think if the leg keeps getting stronger, I’ll be able to lift it easier…go figure!

Mentioned a couple of blogs ago that the hemorrhoids were causing problems and causing Dysreflexia. Haven’t had that happen for a while as we are using more Preparation H and that is helping a lot. I know too much information. Which reminds me…Do you know the Italian word for Preparation H? …Innuendo!!!!!!...hee…hee…hee! Yes I can laugh at my own jokes!

Shannon wants me to stand and do something with my hands. She wants me to stand and brush my teeth. Haven’t tried it yet. As I am starting to walk better and keeping my hips forward when I walk. Shannon says it is my brain making those connections…I say my back, gluts and hip adductors are getting stronger and I am able to hold my hip forward…do I dare tell her what I think…we’ll have a discussion!

Just don’t know how to go about training. To train of course you push yourself a bit then recover and do it all again. I want to do that now and I am wondering if I push it and get all tightened up will it get better as my body adjusts to the inputs or will I always tighten up after exercise, regardless how hard I go. Better wait until after the Locomotor Program is over before I start to mess around and see what ‘over doing it’ really means.

Thanks for listening…

Sept 2 to Sept 16, 2013

Sept 2 to Sept 16, 2013

Labour Day…I did no labour and in fact I did nothing all day. Asked Darcy to take me to the gym and she ignored me. Did a few sit to stands before bed and that was it…a true rest. Watched Milos Ronach, a Canadian lose the 5^th set in the US Open. He’s only 22 so he has many more years to kick butt.

Tuesday went to therapy. Different format today. I usually try to walk an entire lap and then rest. Usually my posture falls apart after about half to ¾ of a lap. By falling apart, I mean my bum sticks out and I lean to the right to take the left step. Today, I was able to walk about 20 meters and the bum didn’t stick out and I could actually take steps with both feet. We’d stop and I’d sit in the chair and go back to the start and do it all over again. Did that 3 times and was able to take ‘real’ steps. When I keep my butt in it is easier to take the step…I’d say ‘a step in the right direction.’ The goal is to be able to keep the butt in when I get on the treadmill. Wonder what the tone will do it may not be a problem as I’m tied in the jolly jumper and that may support me enough. 

Sept 4^th Grandpa Bob is away and I am missing the gym. He gets back on the weekend. Did the pool with Darcy and finally on the trike for a spin. An aside…dropped a piece of Dentyne gum on the floor, sugar free stuff and the dog wouldn’t touch it and she’ll eat anything…that should tell me something. Did 15 k outside and perhaps overdid it a bit. Did 6 laps of the subdivision. Got ½ way around on the 6^th lap and knew I’d done too much. The legs just quit. Very tight after the ride. Now, I know I overdid it. My back is rock hard and my nose is really plugged and the legs are burning.  All the nerves were jangled after riding for 1.5 hours. All night the body was tight and didn’t want to move much. My legs felt like rubber and transferring from bed to chair and chair to car was interesting. Got to therapy on Thursday and tried to stand up to transfer to the mat…both Stephanie and Barry had to hold me up. Got into the standing table for 15 minutes then stretching and some sit to stands. Stephanie introduced some new exercises. Stand up and then put the right foot on a 3” high box and then a 6” box. The left leg has to take all the weight…really good exercise to strengthen the left leg and getting my left hip pushed forward. A call to my bother-in-law is in order to make me some boxes. Got the word from Stephanie that I had to take the rest of the day off, no riding and tomorrow only a 30 minute easy spin. The bad part is that Darcy was there and she heard it too…guess that’s the way it will be.

Went back to the 4^th floor to see my friend Neil who is waiting for a nursing home bed. When I got to the nursing station there were some of the my nurses…and one of them, Cindy had been talking to a patient about my blog and she took me in and introduced me to him.  I know what he is going through a month post event, he fell about 25 feet and damaged his spinal cord at c5-c6 and is now in Parkwood for rehab. 

Boy do the muscles in my legs act differently after that long bike ride. My legs are still jangle from it and this is Friday. Didn’t do any cycling, just went into the pool with Darcy. The deep end of the pool is the one of the best therapies. It lets my legs move in all directions. Not too long ago it felt like there was a block of wood between my legs. I think it was my hip flexors that lacked sensation.  The left flexor is very tight and pinches when I bend the leg at the hip. I think it just needs to be stretched. The deep end is really the only place where the hip flexors get stretched.

Geez, it’s a bummer when a workout recovery takes 5 days. It’s Monday Sept 9 and I still feeling last  Wednesday’s bike ride. Only did 38 k last week on the bike and on Sunday I did nothing other than go out for 2 coffee breaks...sounds like I'm back at work!

This week I’m getting more dysreflexia events (AD). At least, I know what they are and I can handle them better now. They are like anxiety attacks, I just have move around. I was out on the driveway at midnight doing laps in the wheelchair. Went to the gym with Grandpa on Monday, Sept 9, the first time in a couple of weeks. I was going to take it easy and I thought that I did. Everything was going ok until I got on the crunch machine and I over did it…that extra set was just a bit too much. Muscles used to get sore after a hard workout but now it is completely different. My entire body tightens up and all toned up for several hours and I can’t move and lasts sometimes for days. Since  I am going back on the treadmill, there will be no weight lifting for the 5 weeks.. We’ll see how the tone goes after an hour in the jolly jumper.

Thursday, Sept 12 was the first day of the treadmill program. Didn’t think it was going to be  a good day as there was some AD on the way to London. It was the first session and was 1.5 hours of assessment. There were lots of tests, doing a sit up, rolling over, sitting straight, checking strength in arms and legs, doing sit to stands, standing for 2 minutes, standing with eyes closed for 10 seconds, turn in a circle, walking for minutes. I was able to stand for 2 minutes and for 10 seconds with eyes shut. Made ¾ of a turn, walked for 6 minutes and did 88 feet. Should clarify on the 6 minute walk there were 2 sit-down rests and 3 catches by Barry (PTA). A couple of the catches were interesting as I started to fall backwards and Barry allowed me to move my feet backwards to try and catch myself…which I wasn’t quite able to do. The feet moved, just not quick enough. These are things I can practice at home. Although I wouldn’t want Darcy to let me go as far as Barry let me fall. Darcy would correct my balance before I would fall.  My last 6 minute test in April, I only lasted 3 minutes and I was using a walker and assisted by 2 physios, so there is some improvement there…yeehaw! Another interesting thing they had me doing was to pick a ball up off the floor from a standing position. The ball is about 9 cm in diameter. To my surprise, I was able to get down and almost touch the ball, and I didn’t fall over.

Shannon is the physio that will be looking after me on the treadmill program. She wants me to do more standing and walking at home. She suggested that I stand to brush my teeth and stand whenever I can. I need to stand at every opportunity to get out of the chair. Seems I am spending too much time sitting on my butt in the chair and it has become my comfy place. My short term goal for walking is to be able to walk from the bed to the washroom and eliminate any assistance from the PSW’s for toilet activities. That’s for starters and long term goal is to walk the dog around the crescent…about 500 meters.  

Friday the 13^th will be the first day on the treadmill…good thing I am not superstitious. It’s 6 o’clock on Friday 13^th and I finished my first session on the treadmill at 4 PM. The legs are all tingly and the nose is a bit stuffy but not completely blocked. Back and stomach are tight but not unbearably tight. Did some more testing. They want me to stand with my feet together for 10 seconds with my eyes shut. I lasted 6 seconds. Then surprise, they took me to the stairs. There are 4 steps with a railing on either side. Put my right foot on the first step and then bring the left up then step up with the right again. I can step with the right quite easily but I have difficulty bending the left knee and getting it on the step. Got to the top and then another surprise, they wanted me to turn around and go down frontwards. It is a good thing I need a suppository to poop or I would have pooped my pants from looking way down from the top step. It was easier than I thought. Left foot down and the very hard part is standing on my left leg keeping my bum tucked in while the right foot comes down. Shannon won’t let me move if my bum goes out.

 I did 3x5 minute sessions on the treadmill. I was going faster than I did on the last go-round.  I was able to go 2 miles an hour opps that’s 3.2 kph. Last session the best speed for me was 1.6 mph. The differences on the treadmill, that I noticed were: I am able to stand on my left leg a lot better and my strides are longer and I can go faster. I still can’t walk on the treadmill without someone holding my butt steady. We tried it at very low speed but just can’t keep from wobbling big time.

After the treadmill, I stood while they got me out of the harness then I turned around and walked off the treadmill and got to sit in the chair for a rest. It was time to walk back to the mat only with one difference. Remember, Shannon said I can’t move unless by bum is tucked under on the left. Seems that  my body has adapted the pattern of walking where my left side collapse and my left butt goes out. I need to stand on the leg and walk with my bum tucked in. She showed Darcy how I should be walking. I take smaller steps but they are willing to put up with it, as long as I keep my bum in and stand on the left leg. She said it will be hard work to retrain and it will be. Need to walk shorter distances but do it right. Practice makes perfect so be careful what you practice.

Went out to a friends for lobster dinner... Yummy! However, when I got there they were sitting on the deck and there are 6 steps up to the deck with a railing. Instead of having them carry me up I said I’d walk up and sit in a ‘normal’ chair. Not only was the lobster good but so was the blueberry pie and the apple pie…diet starts tomorrow…again!

Confirmation on the weight loss. In April when they weighed me on the treadmill, I was 106 kg and now I am 95!!

How am I Feeling?

This tone and AD are becoming a bother. The goal of riding the 24 Hour Challenge next year looks like it may need to be altered a bit. Just don’t know what to do about it.  The more I do the more tone there is. Any pain that I get causes AD…going to be interesting trying to manage that. I am finding that even the pain from the massage starts AD.

Shannon made a very good point. Right now I am focusing on therapy and everything I do is to succeed at Parkwood. What I need to do is focus on life skills and get out of my chair as much as I can. I never thought about getting into a normal chair as I can’t slide the chair in once I am in it. Need to get something to put under the chair legs to slide the chair easily. It was suggested that we get tennis balls and cut an x in them and put them on the chair legs and it will slide in easier. They know that I am comfortable in the chair…they want that to stop. Where I can walk or stand or get out of the chair, that’s what I am supposed to do. For example, standing to brush my teeth.  Yikes… that is going to be a lot of work.  

Thanks for listening….