Aug 12 to Sept 1, 2013

Aug 12 to Sept 1, 2013

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

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

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

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

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

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

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

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

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

How am I Feeling?

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

 

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

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

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

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

 

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

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

Thanks for listening….