Lifelines For Pete

Lifelines

There are many things that have helped Pete tremendously over the years but I think the following have given him a much easier life.

The Baclofen Pump

Pete had this surgically fitted inside him for muscle spasms. He used to take Baclofen orally but it didn’t work like this does. The pump releases the drug into his body at regular intervals and he has to have it topped up every few months. This is done with an injection and computer from the outside. If he hadn’t have had this fitted, we would now be tying him in his wheelchair because the spasms used to throw him out. From the outside of his body, it feels like he has a small tin of beans in there. He can now sit happily in his wheelchair and not worry about muscle spasms throwing him out of it.

The Suprapubic Catheter

Incontinence is not only uncomfortable but embarrassing and worrying. Before Pete had any type of catheter, he would use convenes over his penis, connected to a drainage bag and the convenes were forever coming off. Pete should have been fitted with a catheter long before he was, but because we were so naďve about these things, we weren’t told about them so we didn’t know. We both struggled for many years having to deal with these convenes until we were told about permanent catheters. Self-catheterisation was offered first but we didn’t like the idea of that so he was fitted with a penile catheter, later to be changed to a suprapubic. The worry of urine incontinence was now behind us.

See Urinary Problems

Colostomy/Stoma

Struggling for many years with his bowel movements, Pete’s whole life was controlled around the toilet. He spent many hours trying to open his bowels but because he lost the natural pushing urge caused by nerve damage, he was always constipated. The district nurse would come in and give him regular enemas but even these didn’t do much, so he would have a manual evacuation from the district nurse once a week. The other six days he had to suffer, because the nurses refused to come in to manually evacuate more than once weekly.

When it was suggested he had a “Stoma” or colostomy, a surgical procedure where the colon is rerouted to an opening in the abdomen, it worried both of us. Waste matter comes out this way instead of the “normal” way and is collected in a bag which is changed when the bowel has had a movement. Absolutely simple. We were worried before he had this procedure because of smells and accidental problems but it changed his life completely. He was again, able to get on with life without the worry of a toilet. Bowels tend to work at regular intervals and you get to know at what time of day it is going to happen.

See here for Faecal Impaction and Colostomy information

Environmental Control System (The Possum)

The MS Pete has progresses quite quickly and after his legs stopped working, the disease started to have an effect on his hands and arms. He was struggling more and more to do anything. Even pressing his precious TV remote control buttons became a problem which was frustrating for both of us. Because if he needed to change channels he would have to ask me. If I was out, he would have to watch anything that happened to be on until I came home.

Pete’s Possum does everything he needs to do with the TV, Stereo (although it can’t physically put CD’s in there – somebody has to do that). It can turn on the light, draw the curtains, let visitors in, make phone calls and answer the phone. It has now even been programmed to sit him up and lay him down in bed.

Smoking Aid

Pete is a smoker. Has been for many years. Before Pete got his “smoking aid”, I was always giving him cigarettes, having to hold the cigarette and putting it in his mouth between puffs because he can’t hold them anymore. Then we discovered the “Smoking Aid”. It is a round ashtray made from aluminum with a long flexible plastic tube connected to this. The other end of the tube is fitted with a mouthpiece. The cigarette is put into a holder “hole” in the ashtray and placed on a table. The smoker then takes the other end of the flexible tube with the mouthpiece and smokes the cigarette! The only thing that has to be done by a second party is the lighting of the cigarette. It is quite safe and the smoker can then puff away and not get burnt. When the cigarette is finished, the smoker drops the tube and the cigarette goes out by itself in the ashtray. So now I am free to do different things while Pete enjoys his ciggie.