Mishaps!

Breakdown
I have had many misadventures along the way, for instance when we as a family (and Tysa the family dog) went out on a day trip to Westonbirt Arboretum, a local, very large and beautiful park. At that time  my youngest son had broken his leg quite badly and it was in plaster. Therefore he was using a mobility scooter, alongside me in my wheel chair.

We had travelled roughly six miles, doing lots of 'off roading' and climbing steep banks (something that wheelchairs and scooters aren't designed for) when my wheelchair ran out of steam! Unfortunately we had been out so long the charge had run out on the chair. It could be pushed manually, but was incredibly heavy. Luckily my husband had a great idea to tow me home. He used the dog lead as a tow rope and tied me to the back of the mobility scooter my son was riding. Even with a broken leg he was still able to get me back to the car. Can you imagine the sight?????? mobility scooter,  dog lead, wheelchair. Some convoy!!!! :)

Bomb?
Another time while on a lovely nearby beach, I was having a snooze as it was very quiet. My husband decided to take a stroll over the rocks for some exploring. He came back with some photos he had taken of something strange in the mud, luckily he always carries his GPS with him so was able to get the exact co-ordinates. When we got home he put the photos onto the computer and we didn't think any more of it.

Land mine?

Later that evening we were at a neighbours BBQ. One of the men, an ex-parachute regiment officer, came over to the house to look at the photos. He took one look and said it appeared to be a land mine and that we were to contact the police. It just so happened that this stretch of beach (Woospring Bay) is ex-ordinatance and it is where bombs have until recently been  blown up by the navy. The police came to visit us, said they didn't know anything about the situation and that we should contact the Coast Guard.

The Coast Guard came out the following day while we were on the beach waiting for them. It was a beautiful sunny day and my husband was there in a pair of shorts, sun hat and bare footed with his official life jacket on. ( Gok Wan would have had a field day) When the coast guard arrived they were wearing hard hats, boiler suits and Wellington boots (and of course life jackets [don't forget that the water is very shallow here ]) so they were fully prepared. The Coast Guard looked rather silly and said that they felt very stupid. They were a nice bunch and very chatty.My carer had a video and recorded everything.

Waiting for the Coast Guard

My husband then took the coast guard over to where he knew he had found the land mine. Luckily he had his GPS on him at the time. They found another close by and said if the tide wasn't coming in they would have had to close the tow path and evacuate the area a kilometre round the site. They did not like the look of what they had found so they called out the Royal Navy who came out from Plymouth the next day.

My husband had to return to work the next day (he had already taken one day off because of a suspected bomb :) The coast guard informed him that they would contact him as soon as the Navy arrived. He wanted to be there to see what they did. When they Navy came they said it looked like a bomb but it wasn't it was a very large fishing weight!!!!!!!!!!! Apparently we took the correct action when we thought it might be a bomb.
We have the fishing weight at home to prove it !!!!!!!!!!!

Travellers
Years ago we had an old caravan, and used to go to a site nearby taking bicycles in the caravan. Whilst there my husband and children went cycling, leaving me and my father in law in the caravan. We had a loo, and could boil up tea. One day at this SSI site we were visited by a local councillor, who was convinced we were travellers, even though my father in law was an elderly gentleman in a suit and tie. I had limited mobility but wasn't in a wheelchair. The man wouldn't leave us alone and was totally convinced we were travellers. But the offer of a cup of tea made him leave.

Dress
Another time, when on holiday with my family in Lanzarote, a very windy island, I (in my wheelchair) was exploring the hotel with my husband. I was wearing a very pretty boob-tube dress. This was of lightweight, long material, and luckily I was wearing a pair of co-ordinating cut-offs. A gust of wind caught my dress and blew it into the wheels of the chair, where it caught and pulled off,  leaving me topless! Luckily, there were lots of topless sunbathers there so I didn't look to strange (just felt it) I won't wear that dress again!

The offending dress!

Computer Gizmo

I have recently got a wonderful gismo that helps tremendously with my use of the computer, and therefore my communication.


This all started when I had an appointment with my speech therapist who recommended a  Sensory Software Grid 2 system . One was given to me to try and have not stopped using it, much to my husband's dismay because it means the computer is not free for him to use. Wahay.
It's so good to be in control of something. MS does take away so much control.

This is the Word Processing screen view on my PC.
It also has email, music, internet browsing and many more functions

I am learning all the time and dredging up old memories that I didn't know I had (like using a qwerty keyboard.) Myhusband recommended that I 'save' every line or two, because I do tend to delete things when I spasm. Sending emails was fun and I started this with my husband and mother, both of whom would understand if I got it wrong. It has also given me a new neck exercise which is probably good, but does make my neck ache.

When I first started, after relearning the keyboard, I had to learn what all the 'special' keys did. It helps that my husband is quite computer literate so can help me tremendously.

The camera sits above the PC
and tracks my head movement

Apart from the joy of being able to control something and talk to the world, it has given me a lot to learn, which can't be bad for a 52yr old.

As I said above, it is very good for communication and control and I wouldn't be without it.

How it Works

Reflective spot sticks to my spec's

I am quadriplegic and cannot use a conventional keyboard. With this system a camera is positioned on the computer and I wear a light-sensitive spot on my glasses.

This means the computer can see exactly what I am looking at. I have to move my head to choose what I want to do : press a key on my keyboard, read my email 'inbox', send an email, etc.

I decide what I want, look at it for one second and the computer types/chooses it.

There is also predictive text to help speed things up, but in my case my eyesight is not good enough to see it without moving my head.

When I dwell on a letter (in this eg the 'D')
it selects it.
Note predictive choices to the left

I have recently been funded by the PCT for another part for my gismo and that is a sound sensitive switch. This chooses what I want from the screen when I make a noise. Fine except when the doorbell goes and the dog barks!

Sarah

Things you can do

I'm going to use this page to try to show how to deal with problems that people may have - a sort of good ideas page. I'll update this as I think of things:

SILK PILLOW CASE
A friend of a friend was in hospital on her back for four months, the hospital bed linen was very hard, consequently the hair on the back of her head was getting thinner and thinner. One of the nurses recommended a silk pillowcase, which she tried and her hair slowly got thicker again.

The hair on the back of my head had become very thin rather like a toddlers cradle cap.
I spend twelve hours at night in bed, what with watching telly and sleeping, then when up, the back of my head is resting against a wheelchair headrest most of the time – it doesn't stand a chance!

I invested in a silk pillowcase myself and, guess what, my hair got back to normal very quickly; even my hairdresser noticed it and commented. So take it from me it really works!

Exercise

When I was first diagnosed the consultant said there was no point following an exercise regime. This made me very angry and I changed consultants and have followed an exercise routine ever since.

A friend of mine happens to be a Pilates instructor and adapted exercises to suit me. My carers were trained to do passive exercises; I bought some CDs of gentle music and also some scented candles. It was important to make sure the room was tidy and the atmosphere very relaxing. It has recently been decided by authorities that muscle stretches are important, so I'm glad that I didn't take my original consultants advice. I have also recently seen a NHS physiotherapist who has adapted my exercises, making things an awful lot easier and effective for both me and my carers.

POWERbreathe ®
exercise machine 

Breathing Exercises

Apart from the muscle stretching regime, I do other exercises during the day like leaning forward in my chair to stretch my back, moving my head around in a particular way, deep breathing, holding my breath, using a Power Breathe apparatus and stretching my arms down the side of my chair so they don't get set in one position. I also have a motorised static exercise bike which I use most days, plus I alternate between standing and sitting in my standing wheelchair. My posture must be correct at all times not only during exercises.

Exercise Bike
You can find a lot of equipment off the internet including the exercise bike I use (RECK motomed) but always get a physio to check the machine out to make sure it’s appropriate for you.

Stretching
I have recently added another exercise using my hoist sling which provides leg traction.  Basically the hoops on my sling are slid around my ankles ( I wear thick socks which protect my ankles). Whilst I'm laying on my bed my carer gently leans back with the sling around their hips. This stretches my legs without any effort on my carer's part. It is not a particularly comfortable exercise for me but the benefits outweigh this. I have been sitting in a wheelchair now for 13 years so my knees particularly are seizing up and I do have drop-foot as most people with MS have. I have been doing this leg traction exercise now for a long time and even after a month I have noticed a difference.

Sitfit
It is now much later (in fact a whole year has gone past) and my Pilates friend has given me a strange, though wonderful, present. It is a "Sissel Sitfit", which is put under my pelvis when I do my exercises. It wobbles slightly and I have to tense my abdominal muscles just a little to keep my ballance. This is all so slight that I don't notice it, though it has toned my "core" and flattened my tummy a bit in the short time I've been using it.

Sarah

History of my colostomy

I had my colostomy two years ago after a friend recommended it and looked so slim and fit that you would never have realised. I didn’t have it fitted before this because I didn’t know of its existence.

Before having this done I had lots of problems. I had to sit on the commode for between two and three hours at a time, so in the mornings I spent most of the time in my pyjamas. I was also suffering from haemorrhoids and achy buttocks. I was having side effects from the bung up tablets (medication to paralyse the gut) I was having to take, and extreme discomfort from some of the things being inserted into me (anal plugs) and constipation.

Now my carers change my colostomy bag every morning - no fuss, no mess. This is disposed of normally just as you would a child’s nappy.

It wasn’t possible for my children to have sleepovers, we weren’t able to have any family outings and not only mine, but the whole of my family’s quality of life was affected.

It took approximately six months for me to be booked in for the elective surgery to take place. I felt no discomfort during the procedure which I had done under spinal anaesthetic, which caused no lung problems.

I was an inpatient for five days in Weston General Hospital. I wasn’t allowed to leave until everything was in good working order. The colostomy had been changed by me and all carers under nurse’s supervision, so as there were no problems when we returned home.  The colostomy nurse was available by phone and visited me at home.
It took a couple of months for me to get used to the difference and my main concern was that I didn’t have all the equipment that I may have needed in the house. The supplier I use though is wonderful - I placed an order yesterday and it was here this morning!

The sensible stuff

• There are deodorants available.
• Carry a spare colostomy bag. Bags should already have the hole cut to fit so you don't have to mess with it when you are out.

A personal tip – give it a name! I refer to my colostomy as Norman, so I am able to talk about it in public whilst maintaining my privacy. My friend’s is called Fred!

The colostomy is like having a bum on your tummy.




If you want to know more, contact your GP and/or hospital incontinence clinic

History of my catheter

The decision to have a catheter inserted was made when I fell and broke my wrist about 14 years ago.

I had a urethral catheter fitted initially and at this time discovered the great benefits of having a catheter and the convenience of having control again. I then decided to have the supra pubic fitted as these are cleaner, less likely to cause infections and less invasive.
I had this done at Weston General Hospital, at an outpatient appointment.  I found that it was very comfortable upon fitting; there was no discomfort at all.  The site has to be kept clean at all times.

My memory is that, upon wanting this done, the hospital were quick to do this for me and there was no break from urethral to supra pubic.

The problems that are faced by people with limited bladder control are

• Loss of independence
• Need to be close to toilets
• Wet clothes and skin, as accidents do happen
• The need of a radar key to enter private toilets, which made me feel a bit of a plonk; peoples reactions to me being that I did not look disabled (I could walk) so therefore I should not have a disabled key.
• Inability to go on family outings i.e. cinema and school activities etc. This is much more than just frustrating, invading the whole of my life.  People who don’t understand are not able to see why you are not a part of everything and this can include your children being hurt, because of not joining in with the other families. All shopping trips had to be cut short disrupting normal everyday life.

I had to reduce all fluid intakes for events of any nature lasting more than 30 minutes.
Life became very limited due to being on such a tight schedule at all times which, quite honestly, made me and the family miserable.

Benefits

The benefits now are that I can be a part of all the family activities. I can now take any fluid intake, and am encouraged to do this at all times. I carry a clearly labelled drinks bottle for emergency use if there is no toilet available when we are out.

Before the catheter was inserted I had to visit the hospital for a routine check-up. I had to drink a lot for this so I had a full bladder which I found impossible - I was to hold a half litre of water. They then scanned my bladder to test how much it could contain, which was done at Weston General Urology Dept. They then found that my bladder held only 125ml at any given time. The pelvic floor muscles wouldn't hold any more. The muscles of the bladder were stronger than the pelvic floor muscles. Muscle relaxant medication did not make any difference to this.

Description of insertion

An appointment was made for me at outpatients which I attended with my husband. I was given an injection of local anaesthetic, just below the belly button, whilst lying on my back. A canula was then placed through the abdomen into the bladder. Next, a balloon was inflated with liquid to stop the catheter being rejected. During the procedure there was very little bleeding. Gauze was then placed on the wound. My ordinary clothing was worn and upon leaving we went for dinner at a restaurant. I felt really well, my husband even had to leave me, as guarantee, as he had forgotten his money and had to go get some.

Upon coming home I was able to wash normally at the sink and removed the gauze the next day. I was to twist the catheter three times a day for one week, washing the site normally with water but no soap. I had also been recommended to clean the site with saline solution as often as necessary (perhaps every one to two weeks). District nurses have commented that my site is very clean and first-class! I was also recommended to move the catheter bag so that it did not get set in one position.


The sensible stuff

• Drink lots of water and, especially, cranberry juice (which combats infections).
• Carry a change of clothing (knickers and trousers).

None of the above should be needed but it is a great confidence boost.


Every so often, I have to do a washout if necessary. This consists of a small prescription bottle (uniflo) being fitted to the top of the catheter tube; liquid is pumped into the bladder which expresses it back into the bottle. This is done three times then the bottle is removed and the catheter bag reconnected. The reason for this is it's supposed to clean the bladder and remove any debris (calcium deposits). This is easy to do.

Fourteen years on, I have found this has been invaluable. Now the district nurse comes every three months to change the catheter, which is quick and easy. All equipment is sent by Script-Eazy.

I have found that this completely changed my life; I'm able to come and go. I now join in all family occasions, such as holidays, which includes being thrown into swimming pools!

See also about catheter extension when wearing trousers.

CCSVI

Chronic Cerebrol Spinal Vascular Insufficiency

I heard a radio report about MS back in February 2010. Then a day later two friends said they had seen a BBC report about CCSVI which was very exciting. I looked online at the BBC Iplayer and yes, the report was fantastic. Finally someone was looking at MS in a different way, so I watched it three times and became determined to find out more.

The wife of an Italian cardiac surgeon, Paolo Zimboni, had been diagnosed with MS and so he researched it and discovered that she had squashed jugular veins. This means that the blood flowing away from the brain was not flowing sufficiently, causing a backlog of blood. Some was forced across the blood/brain barrier. The blood is unable to get away from the brain and leaves behind bad nutrients (rubbish), which causes inflammations that can then lead to nerve problems in the brain resulting in MS symptoms.

I have been experiencing MS problems for 30 years and in all that time the "MS world" firmly believed that it was a neurological disease. After going on the CCSVI site I was shocked to discover that a Dr had been proclaiming about MS being a vascular disease for 30years, but sadly he was rebuked. If his findings are now really being proved correct, my disease would not have been so far advanced.


This is changing the medical world and the old fossils don't like it!! CCSVI treatment has now been banned in Italy where it was discovered. Research was being completed in many countries across the world but operations have been halted. It is all very political and I believe the pharmaceutical companies are putting pressure on. If Dr Zimboni is proven correct they will loose multi millions in medication and treatments. Not to forget the effects on the neurological researchers who would inevitably loose their funding and now our MS society will not do any more until further research has been done. There are cases where improvements have been shown.


The way they find out if you have a squashed jugular vein is by doing a Doppler scan which is a non evasive procedure and it is like having a baby scan check up but on your neck.

A private centre has now been set up and opened in Glasgow specifically for this diagnosis. Another is being set up in London but not open yet. Staff are being trained by Dr Zimboni to discover the narrowed veins.

The treatment is to extend the neck veins to allow the blood to flow freely. There are two types of stents: a metal one and a plastic one. The plastic stent is the preferable one at the moment as the metal stent is left in the jugular veins and so is a foreign body with all the problems that may arise from a foreign body.

But on a positive note we seem to finally be moving forward and getting somewhere.


Update

August 2010

I had a scan which shows that my jugular veins are very badly squashed and I have been told that I can have a procedure as soon as a clinic is set up in the UK. A clinic is being opened in Edinburgh and will open at the end of October. This will be the only clinic available in Britain. I do not yet have a date but I am waiting, not too patiently!

March 2011

The Edinburgh clinic has proved problematical. It provides no medical back up or nursing care after the operation. The procedure takes an estimated eight days and it doesn't provide nursing accommodation, leaving patients to find a near by hotel to stay close to the clinic. The theatre within the clinic has no wheelchair access and you have to be physically able to climb the five steps to enter the theatre room which is impossible for me to do.

I have looked into a Polish hospital in Warsaw that provides the same procedure. It is a very professional medical clinic that's linked to a hospital and translates perfect English. They have said that I am too physically disabled to have the operation due to the fact that I am of high risk. I run the risk of suffering from thrombosis, pulmonary embolism and stroke. They have focused on the fact that I am (a vegetable) severally disabled. I am trying to convince them that I do a lot of passive exercise (being moved by people/things) It is now March the 5th and I am waiting for a positive response.

It is is now March 9th 2011, and I have had a positive response from Poland, They are aware that I do lots of exercises, have a standing wheelchair and use my exercise bike everyday. They have asked for some more medical information and will then make a final decision. Hopefully this won't take to long as my patience has been stretched to breaking point.

October 2011
It is now October and I realise that I must update this Blog.
I have researched CCSVI and now see that it is too dangerous for someone as disabled as me. That in no way means it is a 'bad thing', just that it's not for me yet.

Sarah