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 25th 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…
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