Magic Skirt

I, like many people with a catheter, bypass frequently.

Skirt inside-out
(click picture to enlarge)

When this happens my knickers and trousers become uncomfortably wet and look unsightly. This is terribly embarrassing and puts me off going out.

To remedy this I have what my carers call a 'magic' skirt. This is a garment with no back to it to get wet. I bought a skirt several sizes too big, with a fastener and seam down the back. I split the seam with a small pair of scissors from the kitchen drawer, cutting down the stitching.This was then neatened either by hemming or using the sticky 'wonderweb' you can iron under trouser hems when they are shortened. If you are really lucky, the material has already been neatened with an over-sewer and will need no more care. I wear the skirt done up at the back and it sits demurely over my legs, with nothing underneath except an incontinence pad on my wheelchair. It's called 'going commando'!

Same skirt
now looking good

One does have to make sure it's tucked in well and no skin is showing! The button helps it stay securely done up, but needless to say, I don't go out in windy weather.

Sarah

Sports car

I never thought I'd get out in a
sports car again

I thought I would never go in a sports car again. Let me explain....

My first car was a Triumph Herald convertible which I loved dearly. When I bought it, it was in a frightful condition, but with a brother who was a car panel beater I brought it back to life. OK, it still had holes in the floor and was incredibly draughty, but it took me to France twice and I slept in it on numerous occasions. Once I went on holiday with my brother and two friends and we got half way down France before breaking down. Herald convertibles are not designed to carry four adults! As I said, I loved every thing about soft top cars. The sense of freedom, the wind rushing past your face, the waves from other Herald drivers, etc.

I dreamed of one day being rich enough to own a soft top white Mercedes convertible, but it was not to be. I got married and had children instead.

But my husband remembered my love of soft tops and when a friend of his was selling his MG recently, he bought it depending on my 'say so'. I couldn't stop smiling the first time I went for a drive in it with the friend, so that was a definite 'yes' and we bought it.

Getting in ready to go

Let me explain more. I'm completely paralysed by MS and cannot move at all. I have to be hoisted into bed, so I do have a manual Wispa hoist. My husband is a wonderful lateral thinker and has 'knocked up' a beam outside our house on which he put a wheel which holds the hoist and supports me. The car is positioned under the beam with the door open, I am hoisted out of my wheelchair using my sling as if I am getting into bed, wheeled over the car passenger seat, then lowered into the seat and the sling is removed. Obviously I only do this when it is good weather because open top cars and rain don't mix.

I can only get in and out at home at the moment because I need the beam, but my husband is designing something else which will enable me to access the car when out. I'm looking forward to pub meals, etc.

Watch this video to see how this works:

Baltic Bed

I have had a Baltic turning system bed for about twelve years now. This is something that was bought for me by Social Services. Good old National Health Service.

There is a handset for the bed which moves in many different positions (head raised, legs raised, bed tilted so the feet are up, bed tilted so the head is up, left turn, right turn and flat). There is also an automatic button, so the bed can move by itself regularly throughout the night turning me from side to side. This is very good for pressure areas and let's face it, turning is what someone without MS would do. The bed can also be raised and lowered, so the carer can put it at the required height and preserve their back (VERY important).

The automatic button can be set to move the bed every half hour, one hour, two hours or four hours. The 'head raised' and 'legs raised' functions cannot be used when the bed is on automatic, however the bed can be tilted (this means my feet can be raised in summer which is good for swollen ankles.)

Since I spend about 12hrs in bed every day, it is vital that I remain in a good position. My Occupational Therapist (NHS) ordered the bed and a pressure relieving mattress twelve years ago and has replaced the batteries and the mattress once since then. (I'm probably due some more changes but that's another matter).

An engineer should check the bed and battery yearly. The battery is important in case there's a power cut.

Sarah

1. Head up

2. Knees & feet up

3. Trendelenburg - whole bed tilted with feet up - head down

4. Whole bed tilted with head up - feet down

5. Bed tilted sideways - looking to the right

5. Bed tilted sideways - looking to the left

Trigeminal Neuralgia

Several years ago I suffered great pain in the right side of my mouth. At first I thought it was an abscess and it quite ruined my Christmas. Eventually I went to my dentist who looked at all the alternatives and took x-rays. He thought it was Trigeminal Neuralgia and referred me to the dental hospital for confirmation.

Meanwhile, my dentist gave me some major pain killing medicine (Tegretol) which did take the edge off the pain, which was terrible. He recommended I use it whenever necessary and I still have twinges when something else is wrong, like I have a cold or something.

The dental hospital were all of the opinion that it was Trigeminal Neuralgia and I was admitted for major surgery on the right side of my face. During surgery, the major nerve to my right cheek and the right side of my mouth was killed. This even affected the right side of my tongue, but total feeling has come back to my tongue now.

I was only in hospital one day. The pain has completely gone, but I have a dead right side to my mouth. This means I have to be careful not to bite my cheek!

Sarah

Hoist and Sling

My Wispa portable hoist shown on some of the tracking

When one is immobile it is important to have equipment that will lift and position me as safely and comfortably as possible.

It is both vital for me and for the back of my companion that I use a lifting system to get out of bed in the morning. This seats me well in the wheelchair.

I use a Chiltern Invadex (UK) Ltd Wispa portable hoist supplied by Social Services which slides on tracking to help get me out of bed. I also have had tracking put in the lounge so I can use the hoist to transfer me from my wheelchair to the sofa so I can join the family. Sitting on the sofa and being part of the family is incredibly important to me. It is also suitable for lifting onto a toilet or commode if necessary, but I don't need this.

My choice of sling

It is necessary to use a sling in conjunction with the hoist. These come in all shapes and sizes. I have tried many but the one I have found most suitable is one that doesn't go under my bottom so it can be removed easily when not required.




An independent engineer checks and dates the tracking, hoist and sling every year and leaves a little sticker on the hoist. Any problems are dealt with by this company and all I have to do is charge the hoist every day. I have been given a mains charger which is very easy to use.

This video shows how easy it is to get me out of bed into my wheelchair

Sarah

Baclofen Pump

I have severe secondary progressive MS and am not at all relaxed. My specialist doctor had tried everything, oral Baclofen tablets (a muscle relaxant), exercises/physiotherapy and botulinum toxin injections (botox to you and me). I was still ever so stiff, so he recommended that I try a Baclofen pump.

The drug Baclofen works on the nervous system. By taking it orally I had to take relatively large doses to have any effect. The problem with this is there are unpleasant side effects - the main one being sleepiness, but also it effected my voice and memory. Increasing the dosage to relieve my spasms just made me more and more tired. I was on the maximum permitted dose, so pretty knocked out all the time. A baclofen pump, on the other hand, delivers the drug directly to the spinal fluid. Therefore I would only need minute doses by comparison - microgrammes instead of milligramms, so the drug is far more effective and the tiny dose means I would suffer no side effects

The pump is fitted under anaesthetic in hospital. It is a simple procedure and is a really little thing about the size of a tin of sardines. It fits just under the skin to the right of the belly button and a small tube runs from it, round under the skin to the back. Here it goes up inside the backbone to deliver the Baclofen directly to the appropriate nerves. (See picture and description at foot of page). This means that only the parts you want relaxed are affected, not other bits like voice and memory. Everything is very small and is concealed under the skin so one can wear ordinary everyday clothes. One can live a normal life and nothing shows.  

The Procedure
I agreed to have it done - in for a penny; in for a pound!

First, a test dose is given to check that it was going to work on me. I had this in December 2011 and since this was a 'procedure', not an 'operation', it was done on the ward rather than in a theatre. It  involved an overnight stay in hospital, a local anaesthetic and a tube inserted  into my backbone.

When I was tested before the dose I was as stiff as a board. My specialist is a big strong man and he found it very difficult to bend my arm and leg joints - this is quite normal for me. Once the test dose was given he saw thet I was as floppy as anything - I was incredibly relaxed and very comfortable. My specialist said he had never seen such a good result and I couldn't stop smiling!

Following the success of the test dose I was admitted on Friday 27th January 2012 to have the pump fitted. I had the operation that day and was discharged the next day, a new woman with a new pump to get used to!

All smiles with my surgeon the day after my operation

My specialist halved my oral medication immediately and over the next few weeks weaned me off completely. Oh my unbelievable joy when I took my last Baclofen tablet. Prior to the pump I was on a whacking great dose!

The tablets had bad side effects, the main one being tiredness. Before the pump was fitted, I was sleeping up to two and a half hours every afternoon. Shortly after the pump this fell to one hour and I now only need half an hour just resting. Sometimes I don't even drop off at all if I'm going out or choose not to take 'time out'.

Also soon after my voice got stronger and more comfortable than it was. (I'm sure the family still don't know what to make of it when I tell them not to interrupt  They were so used to finishing sentences for me when my voice was very weak.)

Refilling
I now have regular out-patient check ups at the hospital where the pump is refilled and the dose can be fine-tuned by turning the amount of Baclofen delivered up or down. The adjustment is totally non-intrusive as it is adjusted magnetically by the specialist.

My MS specialist (my hero!) refills the pump every few months

The pump is refilled by syringe.
(Click picture to enlarge)

Refilling the pump is done by a simple, pain free injection. First the remaining dose is withdrawn then it is refilled with fresh Baclofen. This ensures that my specialist knows exactly what dose is 'on board', though the pump itself actually monitors its contents and delivery rate and transmits this information electronically to his magic machine which he uses for adjusting the dose - how clever.

All this is wonderful and it was funded by my PCT. My Specialist had tried everything else (as mentioned above). He had tried it all and I was still ever so stiff, so he talked to me about having a pump. It was the first time I had heard of it.When I talked to my carers about pumps I discovered that the husband of one of my them, who is paralysed, has one. Apparently it works wonders for his relaxation. Anyway, I had one and I think it's great. I would recommend it to anyone with stiffness caused by MS.

One Year On
It's now over one year since I had the pump fitted and I still think it's great. Considering it was such a simple procedure I just with I'd known about it and had it done earlier.


Sarah

Further information
For more details about fitting an intrathecal Baclofen pump see this excellent factseet published by The Royal Children's Hospital, Melbourne. You can see how it works by seeing their diagram below.

My thanks to The Royal Children's Hospital, Melbourne for kindly allowing me to use this picture
Click here to see their website showing further details

How to make a catheter extension

Many people have catheters, and indeed I have had a supra pubic one for 17 years and know how useful they can be. I tend  to wear jeans but sometimes I choose to wear a skirt,  or 'cut-offs'.

When I wear ordinary trousers and need a wee, I have to get my carer to help me because I'm paraplegic. This is  something that could be both uncomfortable and embarassing if I did not have a catheter extension. My carers all say they have never seen anything like it, and groping up someone's trouser leg is horrible.

This is something that my husband has made using a piece of tubing from my nightbag - see below. He cuts two pieces of tubing off,  one from the top and one from the bottom.These are then stuck  together using the piece of plastic tubing designed to join the nightbag to the catheter bag. The join is covered with emergency tape. It has an on/off switch as does my catheter  bag, so I know having two switches, one on the catheter and one on the extension, I will not get a wet leg or wet trousers.

When I need my bag emptying this can be done discretely, by using the on/off switches and not having to raise my trouser leg or grope up my leg for the catheter bag.

1. Take a night bag

2. Gently tear out the tap

3. Cut c. 5cm from the top pipe

4. Moisten pipe A and insert into all the way into B

5. Snug fit will hold but can be covered
with tape for added security.