August 2003 Newsletter

It’s been nearly a year now (doesn’t time fly) since I took over from Ian (Smith) as editor of our newsletter. My diagnosis 7 years ago was a ticking time bomb waiting to go off. My diagnosis also bought upset to the family as my father and my daughter are also affected. However, as I’m sure you will all relate to, our lives were placed on a backburner, but by and large we had to remain upbeat and defiant. More importantly as before diagnosis I was intending to take on a teaching job and my husband was then running his own building firm (which unfortunately he had to give up), Ian stepping down as editor gave me a new purpose in life.

I was so excited to have the chance to do this, it has made such a difference to me. I am so used to being busy and being involved. Participating in such a great team has given me the challenge I need. Kev (my husband) and Ashley (my son) would probably beg to differ on that one, when it comes to the task of assisting me with binding the newsletters, then putting them into envelopes and eventually stamping them. On a more cheerful note, I’m sure you’ll all join me in wishing a belated happy birthday to Sebastian (Ian and Lorraine’s son) who celebrated his 1st birthday on 10th July 2003.

Talking about celebrations, I couldn’t let the August newsletter go out without commemorating the wedding of Stephanie and John oh! I nearly forgot, and of course Frodo on 31/08/03. On behalf of us all have a whimsical day with memories and recollections you both will always treasure. Have a great wedding day, enjoy your honeymoon, relax and have a great time “don’t do anything I wouldn’t do”. I’m sure you will all agree with me that they both deserve a stupendous time, congratulations to you both, hope the weather is fine and you both have a wonderful day.

Useful information

Incontinence

Bladder problems affect more than six million people in Britain. Many sufferers can do a lot to help themselves by starting a programme of exercises.

Pelvic floor exercises can help strengthen the muscles in the pelvic floor, giving you more control over your bladder. To exercise your pelvic floor muscles, imagine you’re passing urine and clench the necessary muscles to stop the stream. Count how many seconds you can hold on for and then relax. Repeat as many times as you can.

The bladder is a pear shaped sac made of muscles, which is supported by the pelvic floor muscles. This sac collects and stores the urine made in the kidneys. When full, the muscles contract to squeeze out all the urine through a tube called the urethra.

Keep up your fluid intake. Try to drink at least six cups or glasses of fluid a day. It is best not to drink too much tea, coffee, fizzy drink or alcohol as these can irritate the bladder and make problems worse. Watch carefully and you’ll notice which drinks cause problems. Never cut down the amount you drink as this makes your urine more concentrated and can make bladder problems worse.

You should also:

  • Eat plenty of fruit and vegetables to avoid constipation. When the bowel does not empty it swells and pushes onto the bladder.
  • Try to keep your weight down and take daily exercise – being overweight puts extra pressure on the bladder.

Bladder retraining: The problem of urgency gets worse if you get into the habit of going to the loo too often. The bladder gets used to holding less, so it becomes even more sensitive or overactive. Bladder retraining helps the bladder to hold more urine and become less overactive. However, it does take time and determination. Keep a record of how often you pass urine for at least three days. Gradually increase time between visits to the toilet. When you get the urge to pass water, try to hold on a little longer each time. The urge often stops if you hold on for a while.

Medication: This can be used to improve the flow of urine. Drugs that can help people with daytime urgency as well as those who have to get up several times during the night are available on prescription. There are also medications available for men with prostrate problems.

Catheters / Self catheterisation: These treatments need to be prescribed and can help with your bladder retraining and more importantly can be used by men and women of all ages. You will need to see your doctor and ask for a continence care nurse to visit you and they will then go through the procedures and explain how this method could work for you, giving you practical guidance and advice.

Long term catheter This is a long flexible tube inserted into the bladder to help urine drain away. Whilst the catheter is in place, urine drains away automatically – you do not have to make any effort. The catheter is held securely in position by a hollow balloon inside the bladder, which is filled with sterile water. As the name suggests a long term catheter can stay in place for several weeks, though the exact time may vary. There are many drainage bags to choose from. During the day, you’ll wear a small bag attached to your leg, which is connected to a larger bag at night. As previously mentioned, these are only available on prescription so you will need to see your G.P. who will advise you accordingly.

Lifestyle: Continence products are not in themselves a cure, but the can be part of one, making a significant difference to how you can control your life. With thousands of different products available from manufacturers, the choice you make will be based upon not only the degree of incontinence but also your lifestyle – do you travel, play sports? If so, these are important factors to take into account.

Electrical Stimulation: Men and women can be helped by electrical stimulation of the pelvic floor. A probe carrying an electrical current is placed in the vagina (for women) or back passage (for men) and exercises the pelvic floor muscles; it can also improve an overactive bladder and reduce urgency and frequency.

The Healthy Bladder Campaign has a free booklet. Write to:

Incontact
United House
North Road
London
N7 9DP

Or call them on 0870 770 3246 or alternatively visit their website at: www.incontact.org

New Technologies

The appliance of the latest technological developments can make a serious difference to the lives of disabled people. The last few decades have seen massive technological developments in the disability sphere. New materials, designs and technologies have bought lighter, more comfortable products ranging from the lightest of sports wheelchairs to realistic prosthetic limbs.

Functional Electrical Stimulation

Functional Electrical Stimulation (FES) produces contractions within the muscles by means of electrical stimulation. Applications are found in stroke, spinal cord injury, head injury, cerebral palsy and multiple sclerosis. Each year in the U.K. over 100,000 people suffer from a stroke. Of these, 30,000 are left with a mobility defect, typically manifested as a dropped foot. Additionally people who have a neurological condition may also have a dropped foot. This means that the individual is unable to lift their foot on the affected side, during the swing phase of the gait, leading to the foot being dragged or swung out to the side. Dropped foot can be due to either inability to activate the muscles that lift the foot or excessive activity in the calf muscles, causing your foot to push downwards.

The Odstock Dropped Foot Stimulator

The Odstock Dropped Foot Stimulator is a single channel neuromuscular stimulator that corrects dropped foot by electrically stimulating the common peroneal nerve using self adhesive electrodes which are positioned correctly on the lower leg. The electrical stimulation causes dorsiflexion (lifting of the foot) and when timed to the gait cycle using foot switches placed in the shoe, walking performance can be considerably improved. The device works by causing a contraction of inactive muscles but may also cause a relaxation of the calf muscles. Electrical stimulation produces a sensation similar to “pins and needles” and is found to be comfortable by most users. The device is designed to allow sufficient flexibility to cope with a range of problems, while remaining simple to use and set up by the physiotherapist.

How to be referred for treatment

If you feel FES may be of benefit, you must be referred by your G.P. or hospital consultant. Referrals should be made to Professor Ian Swain, Department of Medical Physics, Salisbury District Hospital, Salisbury, Wiltshire, SP2 8BJ.

Northern Conference

Wigan Pier - 7th June 2003

With great intrepidation FSP members from far and wide confronted the devious thinking behind the one-way system closely guarding the heart of Wigan town. Remarkably we all made it; except for the Dept of Employment speaker, who would you believe was a relative local. Once again can we thank Mike (Fawcett) for sourcing an excellent venue?

Unfortunately Mike (Fawcett) after all his soul searching and enthusiasm surrounding this new venture for the group was unable to join us due to illness. I'm sure you will all join me in wishing Mike (Fawcett) a speedy recovery.

The day began with coffee and the opportunity for everyone to relax & generally get to know each other before the start. Myself, David (Pearce) & Ian (Smith) then welcomed everyone, confirming the plan for the afternoon forum session with the wish that we all enjoy this, the first of many conferences in the North.

After a splendid buffet lunch Anita Wall and Jill Topping presented the work of The Leigh Infirmary Rehab Team in the local community. We marvelled and listened as each service so clearly connected to others providing a fully comprehensive care package. It very quickly became evident this provision was more the exception than the rule. Welfare where there was a mental health issue highlighted the work of the Community Mental health teams to challenge somewhat, Disabling Barriers & empower Enabling Environments. Referrals would be made to employment support workers who would assess the actions needed; enabling the client to achieve a fulfilling life once again. Questions were answered as topics familiar to us all such as emergency alarms, home care and motorbility aids were viewed. In times of limited funding congratulations were expressed for the enterprise demonstrated by The Leigh Infirmary operation.

A short break providing group communication was taken before the meeting welcomed Roland Nickson presenting a short paper on Access to Work. Roland slowly moved through the various aspects of the scheme and how they might help us. It most certainly highlighted once again the minimal publicity and therefore use; of this potential benefit. Much the same could be said of Disability Living Allowance. Each particular claim would be individually assessed, resulting in full payment in most cases, and wait for it, it is not means tested. Aids in terms of Employers' legal requirement at work can allow for the provision of wheelchairs and adaptations to both building and equipment. Disability advisors in Job Centre Plus sites would welcome a request for the information pack. A better understanding of this scheme can only benefit us all.

The next segment was an open forum period. Feedback on the day was sought in preparation for next year's effort. A larger number of members may feel able to come at a time not directly in the summer holidays period. A longer notice period would also be helpful, although I would like to add that discussions were made and members were informed of this gathering four months prior to this. Myself, David (Pearce) & Ian (Smith) then ended the afternoon with the wish that we all meet up again (with many others) next year.

Members’ Letters

Branching Out

On Saturday 24th June, the Holiday Inn Hotel at Exeter, gave a blazing (wasn’t the sun hot) welcome to the inaugural area 4 get together. The full turnout was most appreciated, resulting in a desperate cry from the back: “we need more chairs”. Twenty guests joined David Pearce and Ian Bennett, and as the seating capacity of the venue was twenty two, the atmosphere rapidly became very cosy.

Proceedings began in a similar format to our Area 1, Milford get togethers, i.e. mingling, and guests generally getting to know one another. After nearly an hour, we settled down, seated in a circular formation and the open forum session began.

The first topic discussed was physiotherapy, and in particular its importance in any self care programme, which provoked some questions. Where physiotherapy is considered necessary, the consultant should be asked for referral to the department at the relevant hospital. Only a neurological physiotherapist will have received the advanced level of specialist training to deal with FSP. In conclusion, it became very apparent that few, if any of us were sufficiently motivated to continue a physiotherapy programme, if not under the referral of a physiotherapist.

It was agreed by a couple of guests, that horse riding was found to be beneficial, although the positive consequences were not noticed immediately, and typically, not until the following day. It was agreed with some humour, that immediately after dismounting, it was found that there was a short term degradation in ones walking abilities. These discussions led on to the possible benefits of one sleeping with a cushion between ones knees being highlighted. Some benefit was also expressed in regularly attending yoga classes.

During the above discussions, reduced mobility highlighted transport requirements and the lack of local specialist transport providers. Social Services, community transport schemes and Help the Aged were suggested as possible service providers.

Ian Bennett demonstrated his Functional Electrical Stimulator (see separate article within “useful information” section), which generated interest amongst several attendees. David Pearce pointed out that the hospital responsible for developing this equipment, will be demonstrating it to us at our Gloucester conference in September.

Copious quantities of Dorset Apple cake and accompanying refreshments, greeted attendees, midstream their final discussions, before departure time at around 5.00 pm. David and Ian ended the afternoon in agreement that with the help of everyone’s enthusiasm, the meeting had been a most worthwhile experience. The hope is that events such as these will be seen as helpful and interesting to all involved, and may even enable some new long lasting contacts and friendships to develop. We have every faith that we can meet up again in the near future.

Ian Bennett and David Pearce

Dear Sharon,

I hope this may be of some interest to you as in the old days there were no mobility aids. The other day I happened to think about how there has been a change with help for disabled people, and my thoughts went out to my Grandfather Moses Bailey, who unfortunately passed away in 1968. As a child my memories of granddad were that his legs were very rigid. He managed to travel around in a long bath chair vehicle that was magnificent. It incorporated two long arms that he was able to push forwards and backwards for him to be able to activate the chair without him getting too exhausted. Every Saturday he would get in the chair by using the old kitchen chair, place that in front of him then dragged his legs up to the chair; he would do this until he reached his wheelchair. He then carried on up to the top of his street until he reached the market place, where he sold the Football News hail rain or snow, although he did have a waterproof cover for these times. There were no ramps in those days, but with sheer will and determination, he always managed to get where he needed to go.

My Grandfather came to reside as a lodger at my Great Grandparents house, and fell in love with their Daughter and they eventually married. I am not aware of when the symptoms of FSP started to develop in our family, but it was obvious to me then as a child that it was not before too long that my Grandfather was too disabled to walk, let alone work. My Grandmother died the year before I was born so unfortunately I never got to know her. I have been told that she was a great lady who worked all hours to keep the house & family together. She carried coal in from the road, which in those days was delivered loose on the road. She would carry it by the bucket full from the street down into the garden to the coal-house. I have a book that she would write recipes and poems in. She must have been a wonderful woman as she had so much strife and did not ever moan about anything that life dealt her.

My Mother had to use an electric chair for indoor use as she was also diagnosed with FSP. My Father made many gadgets for her, so she could be as mobile as possible. He would go off, do a day's work and more often than not, come home with something he had made for her to try out. One in particular was one for me to be able to wash her hair. This was aluminium and shaped to go around her shoulders. This made it much easier for me to wash and rinse her hair without soaking her through. Now I will share with you what I thought was the best invention he ever made for her. He made her a turntable that went next to her bed. It was made of a tubular frame, on a wooden base. It had a breaking mechanism & this allowed the nurses to get her out of bed much easier. When my Mum sadly passed away in 1978 my Father gave the turntable to the nurses simply because it might have been used to assist somebody else. However, the nursing staff were advised that they could not accept this gift, as my Father did not have a patent on it. My Father then said to them that he could not be bothered with patents and replied "you either take it or it will go down the tip". I have now been informed that these turntables are now in production & used for people that need help, as did my Mother. My Father passed away in 1990. If only he new that the time and consideration he had taken into producing this, is now helping people.

I would like to share with you one of my Grandmother poems:

Just when you're out of patience you find you've one bit more.
And that little bit of patience unlocks a troublesome door.
Or it helps you solve a problem that had beaten you, you thought.
Or prevents a nasty quarrel that is rising out of naught.
Just when your strength is exhausted, another ounce you find.
That ounce of fresh endurance, of the body & the mind.
Then you realise that endurance is never at an end.
You can always find a little more to take you round the bend.

Best wishes, bye for now

Margaret Linney. Region 8

Wigan Return - 7th June 2003

I had decided to head north, from Harrow, for the Wigan Pier Meeting in June. Trouble was how was I going to get there - should I drive it, with just myself and the radio for company, or should I go for the alternative train journey?

I had not experienced a long rail journey for a while but knew that, with a bit of forward planning, it would be possible to do it. The thought of being able to relax on the journey, and some prompting from Mike Fawcett who had looked at some train timetables for me, convinced me that I should make further enquiries. In addition I had purchased a disabled persons railcard quite a few months ago in anticipation of making use of the national rail service. I therefore contacted Virgin Rail, who operate the longest leg of my journey from Watford to Wigan, and spoke to their dedicated disabled support service. I told them that I would be using my wheelchair and where I wanted to start my journey, at Harrow and Wealdstone station which is a mile or so from my home, and that I anticipated changing trains at Watford. They went away and made a few enquiries on my behalf to check the train connection times, the accessibility of the stations and the availability of station staff to provide support at the connections. They made all the enquiries even though the first leg on my journey was with Silverlink.

I knew that I was onto a winner when they returned my call and told me that all three stations on my journey were served by lifts. They also confirmed the train times and told me that staff would be there to help at all stations. I therefore set off for my local station at around 7.45 and purchased my return ticket using my railcard. I was helped onto the train and was met, as planned, by staff at Watford who were waiting for me with a wheelchair ramp. They took me to the platform for Wigan and provided a ramp to get me into the reserved wheelchair bay where I was able to read a paper on the journey to Wigan where again staff were waiting to help me off the train and to the station exit.

It was a gentle downhill run to Wigan Pier where I was just in time for meeting the other delegates over lunch but, suffice it to say, the journey had been worth the effort.

On the return trip there was a slight hiccup at Watford as the staff had not been warned to expect me and only my shouting from the train door prevented my ending up at Euston station in London! There was also a slight delay on the return leg which meant that I reached Harrow & Wealdstone station slightly late. Despite this, the station staff were on the lookout for me and I was helped off the train and was home by 9.30.

In conclusion, I would recommend anybody to consider travelling by rail. All you need do is call one of the train operators on the journey and speak to their dedicated disabled support team. They will tell you what can be done easily and where any difficulties might arise - for example if there are no lifts. If you plan to travel regularly, the purchase of a disabled person railcard is worth considering if you receive DLA. The card currently costs £14 a year and will entitle you, and a travelling adult companion, to discounted fares on the national rail network. Call 03454849 50 for more information.

Over and out

Ian Smith