Good News

Good News

The good news is that my knee is being done on May 2^nd…..I am ready this time both mentally and physically.  I saw the surgeon on Tuesday, April 10^th and he said it would 5-6 weeks before I was scheduled and then I got the phone call that it was May 2^nd and they will call me on Tuesday, May 1^st to tell me what time I have to be at the hospital.

The other good news is that I’m going to Occupational Therapy twice a week. Scheduling gets a little tricky, now that I have the surgery scheduled, I understand that after surgery I’m going back to Parkwood for rehab. So now I am an outpatient seeing the outpatient OT and after surgery I will be an inpatient and will be seeing the inpatient physios and OT’s……I think! 

On Tuesday, April 24^th I am going back to Toronto Western to see the surgeon.  First time I have seen him since he told me to take my neck brace off in October.

It is a little bit frustrating for me sitting in the bug while Darcy struggles to get the wheelchair in the bug and hmmmmmm, I didn’t know she had such a ‘potty mouth’.  To fix that we have traded the truck……sob, sob…..for a boring white Toyota Matrix.  Darcy has put the wheelchair in the Matrix and it is much easier for her to do it.WHITE…….hmmmmmm

Whew….people ask me what I do all day long. I am busy from the time I get up ‘til I go to bed.  I have a shower every morning at 8 am….probably too much information but I am telling you anyway.  For example, this week Monday I went to have my INR checked at the hospital and then to the optometrist for new glasses.  You have to remember that it takes about 20 minutes to get me and the wheelchair into the car and another 20 to get out.  So on Monday, for those two appointments there’s about an hour and a half loading and unloading me and the chair.  The last unloading is waaaaaaaay slower than the first loading.  Tuesday I had an appointment at Parkwood with Occupational Therapy at 1 pm for an assessment to get into the out-patient program but as mentioned previously, I am going to be an in-patient in a week and a half.  

Wednesday I had a doctor’s appointment.  Thursday I went to OT at Parkwood again for an appointment I didn’t have….we were a week early and then to University Hospital to pick up the disinfecting sponges that I must use in the shower the night before surgery and on my left leg the day of the surgery.  Friday (today) Grandpa and the Sarge(see picture below) came over at 10 to stand me up and the physiotherapist came at 11 and worked my knee.  It’s moving quite well she says.

Sarge, me, Grandpa

The recumbent has arrived and Grandpa and the Sarge put it together for me which was very interesting with me watching but it’s good that Bob wanted to read the instructions while the Sarge did the work.  The big question was whether I could get on or off the bike from my wheelchair.  We tried it once and it was very simple using my slider board from the wheelchair to the bike.  We had to adjust the seat to get the right distance from the pedals but there was a problem.  The cranks on the recumbent were too long, they are 165 mm and bent even my good knee too far so there was no way the bad knee was going to be able to pedal.  I had an exerciser that had short 100 mm cranks and a friend came over and put the 100 mm cranks on the recumbent.  The next day I got on the bike and pedaled for half an hour and rode 5.9 k, burned 65 calories, an average cadence of 42, and an average of 18 watts.  So the machine does give me lots of data that I can play with……..yeehaw. So far I have 14.2 k on the bike.The plan is to ride at least a half an hour a day and start building my left leg up as much as possible before the surgery on May 2^nd.  It won’t be a lot but every little bit helps.

My new bike

I am still getting counseling and a psychiatrist and a psychologist were here to talk to me last Tuesday.  That was great timing because I saw the surgeon in the morning and the psychologist and the psychiatrist in the afternoon so I was able to tell them that I was going to have knee surgery which was an issue for me in the past.

More good news, the psychiatrist lowered some of my medications from 12.5 mg to 10 mg for 30 days and then it goes to 7.5 and then to 5 and then very slowly down to zero which means that it may take up to 6 months to completely get off this one medication.  I hope the others are a little faster.

My next blog will be telling you about the knee surgery and how it went.  What I know now is that I will be going back to Parkwood for rehab.  I know the staples stay in for 12 days.   I don’t know how much rehab I will be doing with the staples still in.   We shall see…….

Thanks for listening.

Being Home

March 23 to April 1st

Being home has a whole set of new challenges. The care from CCAC and from the Red Cross who provide the service has been excellent. The issue of catheter changing has become a non-issue. Darcy changes the catheter and the Supervisor will train the PSW’s individually. I do understand the policy that a PSW is only licensed to do certain tasks and must be trained by a nurse on each patient. The PSW’s in the hospital do a lot less than the Red Cross PSW’s as it is probably a union issue rather than a licensing/liability issue in my opinion.

The challenges of being at home can be more frustrating than the challenges in the hospital. When there was a health issue in  the hospital it would be dealt with almost immediately as a nurse was a call bell away and a doctor was at most a day or two away. Here a nurse is at least a day or two away and a doctor is weeks away, of course there is always telehelp andemerge which could be hours waiting.

Here’s another share everything story. If you don’t want to read about BM’s etc. skip this paragraph.... Constipation has become a bit of a problem and bad enough that I couldn’t have a BM last Sunday night and Darcy had to use her finger to dig some stool out. Then I made a big mistake and read on the Internet constipation vs. impaction and lazy bowel syndrome in people on laxatives and pain meds. Sunday night Darcy called the Telehelp to get some information. Now there was a lot to worry about, with info from Telehelp and the Internet I was sure that I’d need surgery to remove the blockage. All day Monday I was anxious and grumpy thinking about impaction and the side effects and treatments. What a relief on Monday when everything came out all right and Tuesday night was even better.

I called a friend that I met at Parkwood who broke his back when his quad flipped over backwards and landed on top of him. When I heard his problems mine seemed to fade away. He has to insert a catheter about every 4 hours. I am fortunate in that my bladder functions and I have a minute or two warning and I can stop and start the flow. My bladder is just lazy and I have to retrain it and if and that is IF I pay attention I can make it to the washroom in time. I wear a leg bag when I go out but around the house I use a urinal. I’ve had a couple, well a few accidents and the washing machine is getting a workout. My friend is also having bowel issues and we never imagined that the focus of our lives with a spinal cord injury would be BM’s and urinating.

Hopefully my lazy bowel will be trained easily when I get off the pain meds. I have reduced my pain meds from 15 mg to 9 mg and hope to be completely off in the next 3 to 4 weeks. Once off I’ll start working on the laxative, bowel irritants, stool softeners and suppositories. Better get some medical advice on that as they say, “He who is his own physician has a fool for a patient!”

How am I feeling? Well….it’s still great to be home! I think Darcy is much better looking after me here rather than driving back and forth to London.She does need time away and friends are giving her a break. I am going out for coffee at least twice a week. Oops this supposed to be how I feel? I get a little frustrated because I think about things to do then, realize there is no way to do it. I am still seeing the psychologist at Parkwood every couple of weeks. Another frustration is my physiotherapy as I won’t be getting in for another 2 to 3 weeks. I wonder how much I am losing doing my own weight program. A physio does comes once a week for an hour and works my left arm and left leg. It’s good but not enough. As far as pain goes the muscle spasms in my ribs are my biggest problem and the tone and spasms in the rest of my body are exacerbated by the BM and urinating or lack of.  I really need to lay on my stomach but I don’t have a face pillow. My hips and lower back are getting very tight as they are at 90 degrees most of the time and I need more stretching than I can do here. I have ordered a face pillow and it should be here soon and then my buddies will be able to flip me over on the living room carpet. I ordered a recumbent stationary trainer which will be here on April 11^th. My friends come and stand me up and I was standing for 3, 4 and 5 minutes last week.

I attended a dinner party on Saturday night and missed the 8:00 o’clock bowel care. It was very interesting being at a party with friends. Normally at a party I’d have a couple, ok a few, glasses of wine and mingle. In a wheelchair it was impossible to mingle and they had to come and talk. The party was great and I enjoyed it thoroughly…...even without a glass or two of cab.

Thanks for listening…..

Inch by Inch, Life’s a Sinch, Yard by Yard, Life is hard!

Thursday March 8/12 it was home at last! Spent my first night at home in 7 months although it was in a hospital bed in the family room…it was at home. Leaving the hospital was relatively uneventful. Got into the car with no major problems but the ol’ butt was a little sore by the time I got home….an hour ride. 

I asked the nurses to sign my long slider board, the one I use to get into the car, and one wrote: Inch by Inch, Life’s a Sinch, Yard by Yard, Life is hard! I think that will become my mantra.

Friday evening the pharmacist came and explained all the drugs I was taking and how warfarin works and why I had to have my INR checked weekly.

 Today and last  Monday I went for a coffee with the guys at McD’s and that went very well. 

 I had a Dr’s appointment to get my INR checked to determine if I am taking enough warfarin. To get me in the car Darcy has to take the manual chair apart to get it in the trunk and put it back together at the end of the trip. Again we should have had a video camera. It was raining on Monday afternoon and I got loaded in the Bug and Darcy loaded the chair in the trunk. We drove around looking for any parking space as no handicapped spaces were available. We found one but soon realized there was a barrier, the curb. I wouldn’t be able slide out of the car because the curb was too high. We then found a handicapped space at the nursing home across the street and Darcy got the chair out and assembled it only to discover we had left the seat cushion in the garage. Darcy loaded the chair into the car then back to the house to get the cushion. Back to the Dr’s office, get the chair out of the car and it started to pour. I was wet and freezing so we decided to pack the chair and go downtown. The rain stopped so it was back to the Dr’s to unload the chair once again. The trip that should have been 2 unloads and 2 loads, became 4 of each and Darcy was soaking wet to boot. Note: the chair is at the limit that Darcy can lift and she was exhausted after the excursion.

The assistance has started and a PSW comes twice a day, in the morning for an hour for a shower and in the evening for bowel care. A nurse comes about twice a week, an occupation therapist has been here twice and a visit from the physiotherapist who went over my program. I know I have to be a little flexible with the schedul but I would really like to start at 7 in the morning but I know that may not be possible. The night visit has to be around 8:30 as that is the schedule my bowels are on…..Probably too much info.

It is my understanding that the agency, which will remain nameless, has a policy that all PSW’s have to be trained on each patient, to date they have been unable to do anything. Don’t get me wrong, the PSW’s have been great… it is the agency policy that is the problem. They want Darcy to train them how to put on a condom catheter when she only learned through necessity. They want me to lay there with several PSW’s standing around the bed watching as Darcy puts on the condom.  I hung my dignity on the door a long time ago but I’m afraid that is just too much. It still is a lot of work for Darcy since the PSW’ can’t even put on my compression stockings without training even though they put them on other patients regularly.

Just got a call from the agency, they have changed their plan. The PSW’s will be here at noon and Darcy will show them individually how to ‘attach’ a condom and we have to supply the condoms at $2.50 each. Remember a condom catheter is glued on with a very sticky adhesive so it won’t come off. It is bad enough having them ‘torn’ off once every 12 to 24 hours but 4 or 5 in an hour is unacceptable. I assumed that all PSW’s were trained professionals and would be trained in all aspects of the care they provide. I may be messing up my care but how can they expect my wife to train a healthcare professional any of their tasks. I understand that they may not be licensed to put on condoms but there has to be as better way to train them ‘cause it ain’t gonna happen this way. Hmmmmm…..is this directing my own care.

You will have to wait until the next blog to hear the rest of the condom story as they are coming tomorrow at noon…..how’s that for drama.

Being home is fantastic. The scary part is I was starting to consider Parkwood as home as I felt safe and comfortable there and was actually a little apprehensive about coming home. I am now glad they gave me the ultimatum of March 8 to go home or into the Tillsonburg hospital. The only thing I really miss is the 3 hour+ of therapy 5 days a week. I also miss kibitzing with the nurses, PSW’s and other patients. The staff at Parkwood are great.

How do I feel? As Tony would say I feel GRRRRREAT. I assume it is the meds that are keeping from getting too up or too down although I have not had any ‘downs’ since I’ve been home.

 I've gone for a couple of long chair rides... the dog hasn’t had such long walks in 7 months. Went about 3k with the Sarge today, he was on his bike. It was just good to be out.

Thanks for listening….

Last Words From Parkwood

Thought I’d write this blog as the last one from Parkwood. I know Meghan said the next blog will be written in the living room….well…the next one will be.Can’t say enough good things about this place. Here’s the last blog from Parkwood.

On Feb 28 I was  awake at 6:30 and had breakfast and was washed and dressed by 8:00 and arrived at the University Hospital for a  9 o’clock appointment. Saw the Surgeon who was/is going to do my knee when we think I am ready. He is going to see me every 6 weeks until I am ready. That is a huge load off my mind which hasn’t been working all that well for a while. I can now work on getting the leg stronger as soon as the calf is healed.

On Saturday Darcy, my wife picked me up in the VW Bug and took me home for 6 hours. A nurse helped getting me in the car and a friend helped get me out. A problem is the arms on the chair are hard to get out and Darcy has difficulty getting them out. I can slide into and out of the car but the hard part for Darcy is taking apart and putting the wheelchair together. The ride home was ok but my butt was getting a little sore as there isn’t much muscle left. THE fun part was getting out of the car at Parkwood. We had the sliding board in and I was sliding to the chair and we had left the arm on the chair. Slide back into the car and watch Darcystruggle to get the arm off the chair. I am always in such a hurray that I always forget to take my seat belt off.

Just reminiscing about my stay here, arrived on Sept. 14 and it will be 6 months in another  week. I was a big pain in the butt with all the little quirks and some big ones.Here are some of the quirks I had: eye drops had to be put in on the tip a piece of tissue, took my pills one at a time, wouldn’t blow my nose had to clean my nose with a q-tip, had to have someone feed me Ensure and a cookie at 10:30 every night, in the shower couldn’t have water in my ears, had to use the big black commode, my fingers were so sensitive I thought my wife was cutting off the ends of my fingers when she trimmed my nails,  felt every wrinkle in the sheets and I protected my knee and would react if anyone  went near it and I’d react to every move around me even if it didn’t hurt and in PT and OT I’d tense up before they would move me and the list goes on and on. I’m relatively easy to look after now, I think, as I can slide on the commode, use the washroom and do 90 % of the shower. I still need help dressing and some other personal stuff. When I look up I see the lift that took 2 nurses to lift me out of bed and into the chair or commode. Can’t remember the last time I used it. The good things that have happened other than the rehab is that I am pretty sure the claustrophobia is gone, don’t know 100% but very close, found out I have sleep apnea and my depression is being treated. When I got into the hospital I hung my dignity on the door and I should get some of it back when I go home. I really do not know what is going to happen when I get home. I’ll keep you posted.

Feb. 20 was 6 months from the crash and they say that at 6 months the body has repaired itself and you plateau and the changes are much slower after that. Here’s what I have: right arm and hand work at about 80%, the index finger and thumb on the left hand move but they are not strong, middle finger, ring finger and baby only move a little, the left wrist is turned in and it moves very little on its own but will straighten out with some help, the arm bends at the elbow and moves to the shoulder but won’t straighten out on its own. The left tricept is too weak to straighten the arm.I have a lot of muscle tone in both arms. The flexor muscles in the left arm keep the fingers clenched and the extender muscles are too weak to open my left hand. The brachialplexis is a big nerve group in the shoulder that runs the shoulder and it was damaged in the crash so the left arm is behind the right. There is also lot of muscle tone in my back and runs in a band round my abdomen from my belly button to my Chest. The band tightens when I move. It is very tight in the morning and sometimes prevents me from sitting up.

Both legs work but the left is a long way behind the right. As mentioned the left knee won’t straighten out but will bend to 110 degrees plus. I need a CPM – constant perpetual motion machine that moves my leg from 10 degrees extension to 110 degrees flexion. If anyone has a spare CPM laying around, let me know!My left foot has drop foot which means that I can’t pull my toes up. Before I tore the calf muscle I could lift it past 90 degrees but now even with a splint on it won’t come up.

As with any plateau, it takes a lot of hard work to get off of it. Now that I will be at home withno PT or OT I will have to do my own program for my right arm and legs. I will be on a waiting list for outpatient PT and OT which may take 2 to 3 weeks to get in. Just have to remember, a lot of hard work for small gains. The physio from CCAC will hopefully train the homecare worker to stretch and massage my left arm and shoulder to keep it moving.

Thanks for listening…….

Heading Home

Dad asked me to pass on some good awesome news... he is going home.  


Dad is going to be discharged this Thursday, March 8th.  He is very much looking forward to coming home...so, look for his next blog to be written from his own living room once he is settled.


Dad did also ask me to pass on, that he would like a week or so to get settled at home before he is ready for visitors, there is going to be a bit of a learning curve for both mom and dad as they adjust to life at home.


Yaaaay Dad is coming home!!!  :o)

      Picture from a cute etsy shop: Pennywishes that sells art prints and eco-friendly cards.


Can't wait to see you at home dad!

The Trip Home

Saturday  February 25, 2012

The Trip Home…

On Saturday, February 18, I went home for the first time in 6 months.  We went by a Red Cross van out of Woodstock. Picked us up in my manual wheelchair at Parkwoodand dropped us off in Tillsonburg at about 11 in the morning…..wow…. was it great to be home.  My brother-in-law did a fantastic job on the pad for the wheelchair lift in the garage.  The dog even remembered me.  She went crazy when I went into the house and she stayed near me all day long.  Touring around the house with my wife was amazing,checking out the new washroom facility and in general checking out the house.  The  house for the most part is wheelchair accessible.  I had lunch, homemade vegetarian lasagna, just a ‘little’ better than hospital food.  Red Cross picked us up at 4 and brought us back to Parkwood just in time for dinner.

On consultation with the Psychologist and the Dr., it was decided that I was not physically or mentally ready to have my knee done on March 1 andthe surgery has been postponed.  I will see the surgeon on Tuesday and find out what will happen in the future. The tear in the left calf is not healing very quickly and it is swollen and is larger than the right calf. The left foot also swells up and is very puffy and purple after a day in the chair. Elevating it overnight helps and it is almost back to normal by morning.

Someone suggested that I tell you how I feel. I am not very good at expressing my feelings but here goes. Hmmmm….how do I feel? It is easier for me to write about feelings than talk about them. I’ve gone through all sorts of feelings, emotions and moods in the past couple of months from depression, which I’m being treated for, to paranoia where I thought the nurses and everyone was trying to ‘get’ me. Now I see how foolish that was but it was so real at the time. I’ve been very moody, sad, happy,  mellow and jangled. Usually around 5 PM, I start to get ‘hyperactive’ for an hour or so. For those of you who have seen me on 4 cups of coffee it was something like that only in a wheelchair. During the time here I always felt that my body would fix itself as it has in the past. Depression set in when I realized it wasn’t or couldn’t repair everything and it frightened me a lot.

I now know what it means to feel mentally tired. When there are lots of visitors, I can’t really explain it….it just becomes overwhelming.  I am feeling a lot better now and it was a relief to have the surgery canceled and I can now get on with the rehab. Don’t know if I’ve explained my feelings or not…. ‘I do not feel sad’ is the best way to say how I feel right now. The meds  must be working.

PT is going well but now it’s not my knee that is holding me back but my calf. Friday I was up on the right leg with a lot of support from 3 physios and probably had about 25 percent of my body weight on my leg. Again I can’t multi task that is, think about standing and ‘worry’ about the left calf.The sliding from the chair to beds or mats is getting better all the time and I really don’t need supervision any more. Although there are instances were some help is needed. Before the calf was hurt I could get up and sit on the side of the bed by myself and get into the car. I’ll have to wait until the calf heals and try again. The best case scenario would be to have a discharge date after the calf is healed and I’m able to put some weight on the left leg but that will be up to the team.

OT is going well as the weight is going up on most of the lifts and the left arm is loosening  up a lot. I get fitted into my new wheelchairs on Monday.A power chair for getting around the house and out and about,a manual one for when I’m out in the car.

 There is a wheelchair lab here with all types of surfaces to practice on.  I need a lot of practice as I steer using my hand and not my fingers. I steer with the stick between my thumb and index finger.The fingerson the right hand don’t have a lot of feeling and I have to see them to do things. The therapist says I don’t know where my fingers are in space and time. My brain hasn’t figured that out yet. The therapist also said the brain is plastic and can grow new cells and make new connections so with lots of practice, my brain can rewire some of the connections and it  is ongoing.

My daughter in Australia sent me a definition of courage. COURAGE is not the absence of fear or despair but the strength to conquer them. It appears that I forgot this at the height of my depression. Thanks to all of you who encouraged me to see through it.

Thanks for listening……… 

February 17th

Friday, February 17, 2012

It begins again……..

I’ll start with the really good news, and that is I am getting my knee done on March 1^st, less than 2 weeks……yeehaw.

On Monday I slid from my wheelchair into the Volkswagen Bug and went for a 20 minute ride which is the first time in a car since August.  It felt great.  When we got back of course I had to slide out of the bug and into the chair.  The difficult part was getting my left foot in as I had to bend my left leg a lot more than it has ever been bent even before the crash.  The good part is I will soon be able to get in and out of cars and be able to be more mobile. 

In physio, I put too much pressure on my leg last Thursday and tore my calf muscle.  It is now getting better but as with any tear, all the blood runs down your leg and accumulates in your foot.  My ankle is almost the same color as the leg was when I tore the hamstring last January.  The difference is I am on blood thinners now and it will probably take a lot longer for the tear to repair itself.  Ice helps and time in the constant motion machine seems to help it and keeps the joint moving.Haven’t’ been on the Motomed all week until the left leg gets a little better.  Coming up to a 3 day weekend which will get my leg lots of rest as it will be elevated and iced. 

In OT I am still doing the same routines and some of the sets the weight is going up.  I don’t think I am doing the clothes pegs as well but that could be due to tone in my stomach muscles and arms.  The harder I work out, the more tone there is in my right side and I guess the left side is going to be way behind and it is recommended that I don’t go much higher weights until the left side can catch up.  One OT works my right arm with weights and another one works my left arm by stretching, massaging and keeping the shoulder joint moving and my fingers flexible.  The left arm has a pretty good range of motion but now I need the muscle there to be able to do it by myself.

Emotionally, I am still a mess.  Don’t know if I am punched, bored or drilled.  I can’t get motivated for a lot of things that in past excited me.  The strange part is I don’t think I can talk to people any more but I am trying.  The doctors are helping out a lot and the medication is probably helping as well.  Although I am tired whereas before I would never fall asleep during the day.  

A funny thing happened last week in PT, I was getting acupuncture and fell asleep on the table and snored my head off so probably the whole room could hear it.  I snorted and woke myself up.  This is a guy who never thought he snored.Seems that I have sleep apnea and it must have been waking me up for years and that’s why I used to get only 3-4 hours’ sleep a night because I never remember anyone saying I was a loud snorer.  The machine I have now has a face mask that goes over my nose and my mouth……….yes they found one big enough to go over my nose.  The problem is for the machine to work you have to keep your mouth shut and mine keeps opening and my mouth gets very dry.  I have been able to keep it on for 3-4 hours and I guess it’s here for the rest of my life.

Things I have done in the last little while.  I went out to: Canadian Tire; East Side Mario’s for lunch; rode in the car for 20 minutes.  So instead of getting a wheelchair vehicle, I can slide in and out of a car and eventually when I am able to stand on one leg and pivot, I won’t need a slider board either. and.... I am going home for an afternoon visit tomorrow afternoon for a few hours.

Thanks for listening.