Welcome to the FSH-MD Support group Web Site - and well done to our members Susie Dale and Nick Huntley for designing and setting up the Site for us.

We held our Annual Conference at the William Merit Disabled Living Centre in Leeds on Saturday October 18th and it was very a very enjoyable and informative day and attended by 36 of our members.

The Centre itself has a permanent display of all kinds of equipment for the disabled and the staff demonstrate the various equipment on display and give professional advice to disable people on which pieces of equipment best suit their needs.

During the day there were demonstrations of:

• Electric wheelchair hoists by KC Mobility Services
• Reflexology by Crispins
• The Parker Sovereign Bath

Well the story goes; In early 93 my daughter came to live with me, which meant that I had to find a two bedroom ground floor flat. After many weeks, my parents bought a two bedroom ground floor flat in a block of six. The flat was OK, but I had to walk across someone's garden to get to the main entrance door, as there were a few steps leading from the garden path.

My mother, by pure accident stumbled across a leaflet about adaptations for O.A.P.'s and disabled people. It was promoting the grant that you could apply to the council in order to remain in your home. I was told, after telephoning the council that I had to get a letter from my Specialist and to apply via the Occupational Therapy department at our local social services.

This I did and had a meeting with an Occupational Therapist (OT) I simply asked for an easier access to my front door. She then asked if I needed any other adaptations for my future needs. We went all around the flat discussing about a flat floor shower area, lower units in the kitchen and a lift to get me from my car to the front door.

An architect was employed to draw up a proposal (which is covered in the cost of Social Services budget.) The plans were submitted to the housing association for their reference and comments. However, they were a little concerned that it would alter the appearance of the block. I was rather cross to say the least and immediately wrote to my local MP, who in turn wrote to the director of the Housing Association.

My OT, Housing Association and myself had a meeting to discuss the problems that we were having. The Housing Manager couldn't understand how we I had to struggle to find a flat and not knowing the OT bureau could help me either.

The Housing Manager decided to look into his housing stock to see if there was a two bedroom ground floor flat on level ground. Fortunately, there was one available just up the road. It was identical to the one we were living in and therefore did not need to many alterations to the plans. I went through several months, meetings and form filling.

Finally, in January 96 the work started and seven weeks later it was finished, over twenty six thousand pounds was spent on fully fitted low level kitchen, flush floor shower and Closomat toilet, all doors widened to allow access for a wheel chair and an automatic door opener.

I would like to say, because I had the Closomat toilet fitted, unknown to me after the first year it cost eighty five pounds for a three year maintenance contract. I know you don't have to have a service contract but if your toilet was to breakdown, it's quite expensive to get it fixed. So I telephoned the OT bureau and told them that I didn't realise how expensive it was to maintain, considering it was the OT who recommend the Closomat in the first place. They agreed to pay the three year service charge. Like I said earlier, make sure you know what you getting and the cost of servicing your new electric gadgets. Also, my Architect forgot to put a power socket in the porch and the builder refused to put one in because it was not on the drawing and it wasn't quoted for, so the OT bureau agreed to pay for the costs.

Therefore, I recommend through experience, that if anyone is thinking or going through with adaptations to their home, follow these guidelines:-

1)	Make sure they are clear on what they want, don't let the Architect or OT make the final decision and make sure any changes are shown on the drawing.. The Architect showed on his drawing a top opening window, until I pointed out that I would not be able to reach it to open it!
2)	Make sure you are involved with the builders from the start to the finish. I stopped the builder putting an electrical socket near the floor.
3)	Be a nuisance and be insistent on your views and decisions. It's your home and your the one that has got to live there.

With my connection with the Housing Association, OT Bureau, Council's grant department and the Architect, I came across lots of red tape, misunderstanding and discrimination.

So if you want to pick the bones out and publish my story in your next Newsletter Lorraine feel free. However, if I have confused you or you wish to ask me more, then give me a call or if anyone out there wants to know more, they can ring me, I will only be to happy to help.

Glen Cady

We started our discussion by asking the question: "should people with FSH exercise or not?" It was generally felt that everyone should keep as mobile as possible but that they should not over exercise.

Swimming
Diane Collins said that swimming has really helped her. She now manages to swim with the aid of arm bands and can now complete 22 lengths. She only has access to a swimming pool once a week for one hour and says that this may not last for much longer as there are indications that the pool in Liverpool might close.

It was agreed that swimming is the best form of exercise. It was suggested that we compile a list of swimming pools throughout the UK that have access and aids for disabled people. We could also lobby authorities where there are no facilities.

Margot mentioned that she swims on a regular basis and attends keep fit classes. She feels that she has improved since exercising on a regular basis.

Physio
It was felt to be beneficial to have a physio who is knowledgeable about FSH. Evelyn mentioned that she had found posture exercises to be very helpful.

Mary Davies mentioned that she had visited the neuromuscular centre in Cheshire. It was fully equipped. They have two physios in attendance and are very helpful.
Ian mentioned that he found anti-inflammatory drugs to be helpful.

Acupuncture
One member said that acupuncture was helpful and that it had helped to reduce inflammation.

Reflexology
This has helped one member with a frozen shoulder We all felt that pain with shoulders seems to be a common problem.

Driving
If you have FSH should you have to declare it to the DVLC? This will be investigated. Quite a few members have not disclosed the fact that they have FSH to their motor insurance companies. This is not recommended and could cause problems in the event of a claim.

It was felt that one should shop around with regard to Life Insurance and Mortgages, in case some companies penalise you because of FSH.

Informing one's children
We had a discussion on whether it was advisable to tell young children the full facts about their parents having FSH. Everyone had different views on this and at the end of the day it is up to each individual to make their own decision.

The National Lottery are currently operating a Small Grants Scheme, funds are awarded to projects costing between £500-£5000 for 'disadvantaged groups'. An FSH sufferer in Newcastle, Ian Walker, took the opportunity to obtain funding for an activity weekend at The Calvert Trust, Kielder Water, Northumberland. A fairly easy application form and a detailed costing sheet were successful in receiving a grant for £4900. This money was used to take 50 people (approx. 15 families) from Durham and Northumberland on a weekend with the following objectives:

1)	an activity holiday for whole families (not just the individual affected by MD).
2)	a sense of personal achievement.
3)	a bonding experience for individuals and families which would provide ongoing support for a long time after the weekend has finished.

The weekend was a great success and achieved all three objectives. People experienced activities normally considered outside their abilities, these included canoeing, sailing, abseiling, climbing, horseriding, swimming, archery, etc. During the weekend everybody discovered their limitations, able-bodied fathers failed where their wheelchair bound sons succeeded. (one young boy with very severe FSH was up and down the abseiling wall like a yo-yo) As the weekend came to a close families could be seen busily exchanging addresses, associations made on this weekend will continue to thrive for many months and years.

The moral of this story should be 'always be on the look out for new fund-raising opportunities', you may need to present a new angle, but as they say: "if you don't buy a ticket you don't win a prize".

I've tried to explain each one - I hope its understandable!

Lie on back, head on pillow knees bent, feet flat on floor:

1)	pelvic tilts - squash hand under small of back by tilting pelvis & relax (x5)
2)	as above but then lift bottom off floor and lower (x5)

[Extra tilt to do as in 2, but with feet & knees wide apart]

Lie flat on back:

3)	lift I knee to chest & lower (x5) repeat with other leg.

Sit with back against sofa or wall, legs out straight in front:

4)	tighten thigh to straighten knee, pull foot towards you (x5) repeat with other leg.

5)	as in 4, but then lift leg slightly off floor, pause & lower slowly (x5) repeat with other leg.

[Extra to 5 to lift up & out, then back in & down]

Sit with back against sofa or wall & place roll under knees e.g. squashed cushion:

6)	lift foot until leg is straight (x5)

Lie on side, lower leg bent, upper leg straight - keep upper leg In line with body:

7)	lift upper leg slightly & lower (x5) don't roll backwards repeat on other side.

Lie on tummy:

8)	lift 1 leg slightly & lower (x5) repeat with other leg.

Perch on high window ledge I back of chair:

9)	stand up & sit down slowly without using hands (x5)

Stand by a small step I stair:

10)	step up & down slowly, first one leg then other (x5)

Variations:

Stand by cupboard to lean on if needed:

1)	move 1 leg out to side & back (x5) repeat with other leg.
2)	move 1 leg Out behind & back (x5) don't lean forwards repeat with other leg.
3)	knee lifts - lift I leg till just below waist height (x5) repeat with other leg.
4)	hip hitch - keep 1 foot flat on floor, raise other hip by lifting foot off floor (xl0)

stand at the side of a stool-height object e.g. pedal bin:

5)	face forward, lift leg up, bending knee & turn leg out till foot resting on stool lightly return to front & lower (x5)

repeat with other leg.

M.Parlane

Any equipment designed to help the disabled usually carries a hefty price tag and generates a sigh of disbelief. Here's a suggestion that offers the alternative DIY route. Many FSH suffers have increasing difficulty with high steps, a step previously 'easy' eventually becomes dangerous or impossible. These problems may even restrict visits to family or friends, and in some cases stop them altogether An easy way round this is to nail a couple of bit of wood together making a 3 inch step and carry it round in the car boot. It really can make the difference.

Eligibility to State benefits has always been a grey area, names and rules change. While this will probably continue we can do a little to help each other through the maze, for those of us who receive a particular benefit we naturally think everybody else will know about or will be receiving the same - this is not true. other issues such as 'I'm not bad enough' or 'I want to be independent' or 'I can manage, anyway I'd feel guilty' also confuse the issue, all these are rubbish. The individual does not decide on eligibility, this is done by the Benefits Agency (BA), a number of benefits are not income related and are everybody's right regardless of income, those that are income related are assessed by the BA.

Before the eligibility issue even arises you need to know the benefits exist. Often the BA is very helpful but it is still good to have the advice of a support network (MD or FBH or personal friends), these kind of discussions highlight what is available and how to get it.

As a starter/generalisation; if you are having mobility problems apply for the Mobility Component of the Disabled Living Allowance (DLA) - the higher rate opens up the option for car leasing. If you need some level of care (this would normally be your partner, parent, relation, or professional) then you should apply. for the Care component of the DLA. Again, if you are awarded the middle or higher rate you will probably be eligible for 'Invalidity Care Allowance'. All of these are non-income related and are assessed by completion of a personal form (you will not normally be asked to attend a medical). There are also a number of other benefits which are designed to support low income families. Quite simply we should be helping, each other to apply for benefits which may be our right. there are a number of booklets from the BA and independent publishers which have a fuller explanation (these may be available from larger libraries).

I have travelled recently to New Delhi, Philadelphia & Calcutta by air and I hope that this report of my experiences will be useful to anyone who is planning a journey by air.

As regards travel insurance, I used M J Fish who also provide my car insurance. It seems they cater for disabled people, & they arranged my insurance over the phone.

I flew British Airways on all the journeys so I went via their terminal, Terminal 4, at London Heathrow. I travelled alone. I informed BA that I was disabled, travelling alone, needed an aisle seat, got from them a Customer Services fone number. Further, I asked BA to provide me with a wheelchair+assistant so that once in the terminal building, I would avoid the long walk from the taxi into the aircraft, & so that someone else could carry the luggage.

I arranged a taxi, informing them of my disability and needed help with luggage, then just before leaving home, fone Customer Services at Terminal 4 to inform them I would be arriving in (say) an hour's time, confirmed at which gate, i.e. entrance/exit, in Terminal 4 I should be dropped off ... & the holiday began

There is a ramped pavement at gate 4 at Terminal 4 so getting out of the far-side of the taxi onto the road was not a problem.

The assistant helped me into the wheelchair, and also took the luggage in a trolley, to the check-in counter, where I requested the aisle seat. The assistant took my passport & ticket & looked after those until the "authorities" - check-in staff, security, airline staff - no longer needed them, ditto for the boarding-pass, luggage deposited, cabin luggage kept by the assistant, then from check-in, thru Passport Control, thru Security, where I, on account of the wheelchair, did not go thru the X-ray scanner but still was body-searched while remaining seated in the chair, then to a small departure lounge for people with "special needs", e.g. unaccompanied children, elderly people, infirm/disabled, where I remained until the time came for boarding.

I went thru the duty-free shop, seated in the chair, & pushed by the assistant. The shop has fairly wide aisles, & wherever necessary, the assistant got things for me to look at.

Then near departure time, the assistant returned to the lounge, took me + hand-luggage to the departure gate. We boarded first, I remained in the chair as we went from the departure gate down a tunnel to the aircraft door. There, 2 people lifted me out of the chair, 1 lifting up my shoulders, the other my knees. I weigh about 11 stone, I am about 5' 10" tall. I was then put into a small "aisle" wheelchair & either the assistant or an airline steward pushed me to my seat into which I was lifted, again 2 people, etc. & there I remained until it was time to disembark at the other end. I neither ate nor drank anything during the flight, & thanks to this, & also not having eaten or drunk anything for the previous 24 hours, I did not need to use the toilet. In fact, I just dozed so that on arrival, I did not have jet lag. Surprisingly, I was rather hungry ...

In order to disembark, I had to wait for the other passengers to leave, then I was lifted from the seat into the "aisle" wheelchair, taken to the entrance of the plane.

I was then taken thru Immigration, my luggage was collected, taken thru Customs, & ... I was there!

My trip, from Delhi to Calcutta, was my favourite 'cos I am Calcutta-born, I have family there, & in spite of Calcutta's faults - & it has many - I felt like I was coming home.

Kinda strange tho'. Whenever I returned, it was either gray or cold, sometimes both. But it didn't matter. I have family there & I have my life here. & it's good to be back.

I do not know if it's fate but my returns to the UK were always in the early morning when all the shops were closed & after 24 hours without food, I was ravenous!

Jurek Pinches