May 2011 - Wellington Loot!

It was Friday 30th October, the day before Halloween and my daughter Kathleen and I were driving to the HSP meeting in Devon. As we got closer, the road cut through hills on both sides of the road, making it a very scenic journey. These rolling hills escalated from either side, and trees and hedges lined much of our route. We drew closer to Ashburton and turned right at the crossroads where the Dartmoor Lodge Hotel is signposted. The sun was setting behind us when we arrived at the hotel on the southern edge of Dartmoor. The following day (Halloween) at 2pm, the Region 4 meeting was conducted at the hotel. It was at the end of this meeting that I stood up and announced my crazy idea to raise some funds for the HSP Group. I suggested that we should do a sponsored wellington boot dance at our next Devon meeting in March.

When the meeting had concluded and we were all relaxing in the hotel bar it was noted that I had a big problem at remembering people’s names, so in my head I gave them another name. While we enjoyed dinner in the hotel restaurant, one of the members asked if everyone knew their nick name I had given them. I had drank a drop of wine by this time and when I mentioned each members nick name lots of laughs were heard-the atmosphere was brilliant. At this point I knew I could trust these people, I knew I could call them my friends and we could share a laugh and joke together. It made me feel as if the bizarre way to raise money, which I had announced earlier during the meeting, would work. My idea was for members to dance for 20 minutes in wellington boots and to get friends and family to sponsor them for doing so. There were to be no rules, simply to put on wellington boots, wiggle bottoms and move arms, if necessary it could be done from a wheelchair, a seat or a mobility scooter.

 

Sponsor forms were made up by Peter Bateman and some members used JustGiving to raise money on line. March 26th was the big day and what an atmosphere! Members had turned up in fancy dress. There was a clown, a cheerleader, Tinkerbell, a ballerina, a call girl, a pilot and Muffin the Mule wellington boots. A little alcoholic beverage may have been consumed beforehand, but what a delightful surprise was before us and every individual witnessing the event. Faces beamed with joy, there were smiles on the faces of the young and the old. People stood up with walking aids, or sat on chairs and scooters and had a good wiggle, while laughs and enjoyment filled the room. Many people, including myself had not danced for years, and we forgot any inhibitions and we joined together and gave the Proclaimers a little Devon Welly. Then our quite reserved Tony Barnicoat took to the floor with Lorraine Saupé, and the pair of them made Patrick Swayze and Jennifer from dirty dancing look like amateurs. Nobody puts our baby Tony in the corner, not when Lorraine is about anyway. The laughter and cheers from everyone, the feeling throughout the hall was amazing.

On glancing around the room, everybody looked happy, including the new members who were present. There is a lovely idea which I learnt from my mother: If you send out goodness or happiness from yourself it will come back to you in multiples of ten thousand. This was proven by each member at this HSP event. A lovely warm feeling was held in the hall that afternoon. The participants, fundraisers, fund givers, even the Hotel owner who lent Ian Bennett his wellingtons, happiness beamed from everyone’s faces. It was awesome. In total we raised in excess of £1500 so well done to everyone involved.

HSP Group members danced aided by crutches, wheelchairs, walking sticks and scooters. There was much laughter and conversation and new members were cheered as they left the hall. This experience was a pleasure to be a part of and a big thank you is expressed to all involved, It was a heart warming experience.

EMcC – Region 6

Chairman’s Column

I’ll begin by making a confession: When a certain lady member from Wales suggested last October that we should dance in Wellington boots to raise money for our cause, I had to admit that I thought she was slightly barmy. Here we are, eight months later, over £1500 wealthier and having participated in a fantastic, fun filled experience, I have to apologise. Eileen, it was a brilliant idea of yours, well done for looking outside the goal posts.

A couple of years ago I met a lady who was the head of fundraising for a large charity. This lady is now very generously helping us to approach a number of trust fund organisations for some serious funding. If successful any large grants we receive will be used for research.

If any members are interested in getting more involved, possibly as a committee member, please let me know. Maybe some of our newer members may be interested in this, particularly if they have skills that may be useful for us. Committee members are involved with the following tasks:

 • Newsletter editing, production, printing and mailing
 • Web site maintenance and updating
 • Membership record maintenance
 • New member processing
 • Help Desk management
 • Meetings management; minute taking and production
 • AGM planning, preparation and management
 • Charity Commission liaison
 • Book keeping, accounting, bank account management
 • Managing the Grant Assessment system
 • Keeping up-to-date with research teams
 • Keeping in touch with European HSP organisations
 • Occasionally update the Information Booklet

It is not necessary to be a committee member to offer assistance. If you feel you’d like to help and have some useful skills, please let me know.

If anyone has any editing skills I’d love to be relieved of the role of newsletter editor. Obviously I can provide help.

I hope to see many of you at our AGM on June 18th. Details of the AGM are included in this newslink.

Congratulations to Della Brookman and Laura Branigan who following their applications to FSD, have been awarded flying scholarships. Both will receive 35 hours of flight training, Della in Wellsbourne and Laura in Filton.

Ian Bennett

Secretary's Spot

It seems the UK has moved a bit south from our recent hot weather here on the south coast!! Now another couple of requests for information – Expert Patient Programme - has anyone had experience of this NHS system? Carolyn recently had an invitation to join up. In our local area it consists of some seminars which encourage those with a long term condition to take a greater part in guiding the Health Service contacts. We're not sure whether it will help us that much, but would be very interested to hear the experiences of anyone who has already been involved.

Use of gyms and exercise courses. We've had comments recently on the on-line mail list from various members who are taking up either gym membership or exercise classes to help them with HSP management in the longer term. I'm sure it will be of great interest to all members if any of you who have been doing this for some time can share your experiences, both good and bad, to help others to make up their minds. So please let us know what you have done and how it helped (or not). Wishing you all a good summer!

Dave Harris

Useful Information

The role of Physiotherapy in the management of HSP.

In this piece I would like to review what the aims of Physiotherapy are and how we can help people with HSP. I have touched on both tradition Physiotherapy approaches and some new technologies that can be incorporated in physiotherapy approaches.

Many people diagnosed with HSP may have seen a Physiotherapist at some point or other. People’s reports of the benefits they have received from physiotherapy are generally mixed, with some positive and some negative experiences. I feel this may be due to a few reasons. Often the Physiotherapist working with you may not be experienced at working with HSP and doesn’t know the most effective way to help you move forwards. They may not know what will and won’t be effective or helpful.

Very sadly it can be the age old problem of lack of resources. As you may be aware time and staffing levels can limit the amount or frequency of Physiotherapy offered.

Lastly, there is sometimes a mis-match in expectation of what someone would like and what they receive. That is to say, people are not exactly sure what a physio can offer. I often hear the phase ‘all I was offered was a programme of exercises!!’ People may forget that this is a major way we treat people with movement problems. The lack of knowledge about what physio can and cannot offer often leads to disappointment.

So what can we do and how can we help?

The first thing to consider is what are the aims of any physiotherapy treatment and then how can we achieve them? I have listed below the key objectives I think are important when working with someone diagnosed with HSP.

Promote independence – enable an individual to do as much for themselves as possible. Nobody wants to have therapy forever (as much as you may like your Physiotherapist!)So we aim to give you the ‘tools’ to be as independent in daily life as possible. Minimise the impairments – HSP can result in localised problems that can limit general function, i.e. tight or weak muscles, spasticity and poor co-ordination. Physiotherapy aims to work on these specific issues to improve your general function.

Manage symptoms – Physiotherapy can help manage the symptoms you experience such as pain, stiffness, poor balance and walking difficulties.

Prevent / limit deterioration – By addressing the above it maybe that we can limit or prevent deterioration of the difficulties you experience.

Prevent/ limit development of secondary complications – Invariably people with HSP have to move in different ways to achieve every day activities. This can lead to other problems developing such as pain or arthritic changes which we aim to limit wherever possible.

So how do we go about it? Physiotherapy can be broken down into 3 main areas. The first is manual therapy, we may want to ‘pull and push’ (that’s medical speak!) you about to help get muscles and joints into the right place at the right time to do the right job. By facilitating movement patterns and muscle function we can help re-educate, correct or improvement your function. The second area is exercise therapy. We will often ask you to do exercises at home to help stretch or strengthen muscles and to improve your function. Remember you can’t spend all day with a physio so the homework we give you is important.

Lastly, we can use electrotherapy as part of our treatment. This may mean using machines to help switch on muscles, strengthen them, stretch them or help reduce spasm. This may be new to some people but it is a common treatment approach that every physio should be trained in. So what are the areas we can help with?

Spasticity Management – managing the stiffness you experience is probably one of the biggest areas we can help with in HSP. There are a number of ways we can help. Sometimes this may also mean we join forces with the doctors or other health professional to give a combined approach. Below are a few of the more common Physiotherapy approaches:

Stretches – by preventing a muscle getting short or tight this can reduced the spasms and spasticitiy within the muscle. You may be given stretches to do by yourself or with some else to help you.
Splinting – By using splints we can stretch the muscle for longer periods of time. This can lead to better results when compared to stretches you do by yourself, especially for very tight or stiff muscles.
Muscle Stimulation – We can deliver a small electric current to the muscle (or opposite muscle group) to help switch the muscle on more appropriately or help to switch it off. By asking the muscle to work as it naturally should can help reduce spasms.
Functional Exercises – asking the muscles to do what they are designed to in the correct movement patterns is helpful at reducing and managing spasticity.
Posture Management – Posture is key!! By putting the right muscle in the right place to do the right job is the essence of posture management and consequently spasticity management.
Medication – We work closely with the doctors to monitor how effective the medications are. You will probably see a physiotherapist more often than the doctor so we can be helpful at suggesting new medications or changes to your current medication to help improve your function.
Exercises – As mentioned above, Exercises form the basis of Physiotherapy. You will most likely be asked to do them as part of a home programme. Like any home work, it is down to you to do it. Unfortunately no one else can do it for you!! I would suggest that any exercise programme should concentrate on strengthening muscles and working on maximising your balance. This is because these are the areas most likely to help you achieve greater independence in your daily to day activities.
Gait Training – (a fancy way of saying ‘working on your walking’). A combination of spasticity management and exercises will invariably improve your walking. However, some people may need a little more help. A specially trained physiotherapist may look at a treatment approach called Functional Electrical Stimulation (FES). FES uses a small electrical current to stimulate the muscles of the foot and ankle to help you step forwards (other leg muscles can also be stimulated). The device consists of electrodes placed on the skin below the knee and it is switched on by your walking pattern. It can make walking significantly easier and less effortful.
Functional Re-education – Physiotherapy can help you maintain or improve your ability to do day to day activities. We will often watch you do the tasks you find most challenging and then teach you an easier way or even give hints and tips on how you could do it differently. Remember we want you to do as much for yourself as possible!
Pain Management–Whether you experience pain as a direct result of your HSP or because of the altered ways of moving, physiotherapy can help manage the pain. We may use treatment approaches mentioned above, including stretches, massage, facilitation, movement re-education or the use of electrotherapy devices called a TENS machine. We may also work with the doctors to make sure you are on a medication that is helping. As you can see there is a lot that Physiotherapy can offer somebody with HSP. It is not just at the stage of diagnosis or at crisis point that we can help. Often the best way is to ‘dip in and out’ (a bit like MOT’s for a car) so that we can help you stay on top of your symptoms and prevent things getting worse!!

Author – Sarah Daniel M.Sc
Neurological Specialist Physiotherapist
www.physiofunction.co.uk
0800-043-0327

Research Grant Update - Dr. Evan Reid, Cambridge Institute for Medical Research

Last year we provided two grants of £5000 to researchers to help with their work on HSP. One of the groups that we funded is headed up by Dr Reid at the CMIR at Addenbrooke's Hospital in Cambridge. On the afternoon of Friday 25th February I visited Dr Reid at the CMIR to talk about his work and HSP research.

Dr Reid’s research group is currently working towards examining whether there might be a single mechanism responsible for the development of problems in nerves that cause HSP. This is particularly interesting as, if found to be true, will mean that the biological changes that cause HSP could be the same for many HSPers, no matter what gene is mutated or what the type of mutation is. This would then open the possibility of a single treatment for this group, independent of genetics – a very exciting possibility! The research group have previously found this common mechanism in fruit flies, and are currently using mouse models of HSP to confirm or deny its existence in mammals.

Dr Reid expressed his gratitude to the group for the grant which has helped maintain the colony of mice used in this work.

I would like to thank Dr Reid for taking the time to explain the complex areas of their work in suitably understandable terms – it was great to see the detail and complexity of research in this area first hand, and left me with a positive feeling about research into understanding HSP.

Simon Hubbard

Research Project - What effects do hot and cold temperatures have on leg function?

A big thank you to everyone who has kindly volunteered to take part in the first of our 3 studies at the University of Plymouth. We have nearly recruited everyone needed for the first study and testing will continue over the next couple of months. I am hoping to be able to show some of the data that we are collecting at the AGM in June. We will also be carrying out 2 further studies over the next 18 months and will be looking for some more willing volunteers. If you would be happy to take part and would like further information please contact Amanda Austin at the University of Plymouth (This email address is being protected from spambots. You need JavaScript enabled to view it. or 01752 587995) and we will contact you later in the summer. Once again a big thank you!

Amanda Austin

Good Vibrations

It was a year in January 2011 since I first started going to a gym near to where I live, it's called 'Fitness First' and I do have a personal trainer which I haven't had to pay for, that in itself was pure luck for me. I will be paying for it once May comes, but it will depend on funds as to how many times per month I can afford to have him. I have managed to go three times per week & having my trainer has made me more determined to go, when I've woke up on one of those mornings when my body just wanted to give up. It really has made me sit back & think how easy it can be to just give into a negative body! I've had that feeling so many times over the last year and yet that determination to go has done me proud. More often than not I've walked away from the gym far better than when I first walked in, the session has gone really well, muscles have been woken up & my 'Endorphines' have kicked in.

In the last Newsletter there was a brief mention about 'The Power Plate' so thought you might like me to share this with you. I have found 'The Power Plate' a God send to me. Yesterday I could have quite easily cancelled my session, but I was at the gym for 10am. Jim, my trainer put me on 'The Rowing Machine' first to warm up a bit, then 'The Hand Bike'. I had about 15mins on 'The Power Plate' then, which is equivalent to say about 1 hour’s exercise, a kind of lazy way to waken muscles up, which is just what I needed. I have to have help getting on to the machine because it is a high step and I did a series of exercises as I was stood on it. I went through the same exercises three times with a break for about a minute or so in between. I find it amazing how I can feel the muscles start to kick in and how my brain then starts to function so I can get my legs into the correct position more easily and to stay in the correct position. He then had me lay on the plate in such a way so I could have a massage, to which Jim then assisted using a foam roller to add pressure to my legs. Wow! I can't begin to tell you how great that feels, does me the world of good. I have to say though, to rest afterwards is essential, I came home & relaxed for the rest of the afternoon. I slept really well, it does tend to take it out of you, but I try and fit in with my body as best I can. I was at the gym today a little later at 1pm, which was perfect timing, to ensure I was properly rested. The benefits of 'The Power Plate' really kick in the following day, I was so much more flexible today, feeling positive, a positive mind always brings great results for me.

CS - Region 10

From the HSP Help-Line

Hi Everyone,

I hope you have all been enjoying the wonderful weather that we had over Easter, it makes us all feel better after the harsh winter that we had. Now its time to look forward to holidays, if we get that sort of weather there will be no need to go to the expense of going abroad. I hope to see you all at the AGM. We do have a great time with plenty of time for socialising. I am always at the end of the phone for anyone that needs to chat or has a problem. Take care everyone.

Stephanie xxxx

Members’ Letters

Dear Members

I took a leaf out of Laura and Christine’s book (Issue 20 May 2010). After a disasterous visit to Shrewsbury town centre just after Christmas to visit the sales I was in so much pain I decided to go home after only getting as far as M&S. To add insult to injury, not only do I have HSP but also sciatica for the last two years.

Very unhappy about not being able to go around town I decided to check out Shopmobility in Shrewsbury who were kindness itself! Ring up the day before you need a scooter and they will reserve you a parking space, they give you full instructions on how the scooter works (several scooter and chair sizes and models to chose from). When they feel you are proficient they let you go.

So together with my sister, walking along side for support in case anything went wrong, we had a lovely day together all round Shrewsbury Town. What a difference it made and I thoroughly enjoyed my day in town and I wouldn’t hesitate to use Shopmobility again or recommend them to other people. What a difference to have a pain free day at very little cost.

Shopmobility have a directory of schemes/locations in the United Kingdom, Channel Islands and Republic of Ireland. This is good to bear in mind when on holiday or on a trip away from home.

CG – Region 6

Dear all,

I broke my right ankle whilst staying at Della’s in Hertfordshire – I slipped on a bathroom mat, an excess of wine is not a good idea for balance but it does help deaden the pain. I’m not a very patient patient and I thought I’d go insane whilst waiting 4 hours in A&E. Della’s husband Roger kept me company whilst we were surrounded by ‘ill’ people in the tiny waiting room. Eventually I was plastered (medically, this time). Coping with a disability was taken into a new dimension with not being able to use my weak legs at all. Della and Roger were really helpful, I’m so lucky to have such caring friends. I was determined to go to Ben’s HSP meeting in Ashburton against the advice of family members who thought that I should return to York to rest. I couldn’t think of anything worse. They needn’t have worried. I found the whole weekend such a tonic and being with other members was just what the Dr ordered.

Ashburton this time was a little different with some of us in fancy dress for the sponsored wellie dance. I’m sure there are plenty of photos on Facebook which show our loony antics. Like other members, when the prospect of a wellie dance was proposed 6 months ago I couldn’t imagine that such a crazy idea could bring so much fun – the smiles all round said it all. I felt pretty useless in my scooter, I thought I’d be strutting my stuff on the dance floor. I wore a wellie on my left leg to feel a bit involved and was in awe of those jiggling around me. The staff were very kind, as usual (namely Liz and Trevor) and helped to make the whole weekend unforgettable. I’d like to say a huge thankyou to Eileen for arranging the dance. I hope to go back to work soon when I change to a weight-bearing pot later this week – fingers crossed. This week is a whole new learning curve coping with housey-stuff, bathing, eating etc. I can now attack this with gusto having had a perfect start. 3 cheers for the support group!

LB Reg 10

Regional News

Region 6

The fifth meeting of Region 6 in Wales took place on 16th April 2011. We had 11 people attend which was lower than normal due to the Region 1-2 meeting on the same day so we did not get any members from that area this time. It was the first meeting with an all Welsh turnout and it was very successful, with some good information for the members attending and enough to support a raffle that paid for the teas and coffees.

Cerydd Mullar, a young lady from the NHS occupational therapy department turned up and gave a very interesting talk on how the NHS can provide help where needed.

Peter presented Eileen McCarrick with a certificate for being the HSP Wales top fund raiser by not only raising £400 herself but also being the brains behind the very successful welly dance in Ashburton which raised over £2000.

One lady arrived at the meeting after seeing it advertised in the local Seaside News Magazine. She was in her 80’s and having great difficulty walking but she has not got HSP. She was still welcomed by us all and Cerydd has arranged to go and visit her at home to see if she can help with some of the problems she is experiencing.

Some time last year we saw a car turned upside down in Porthcawl after hitting a large bollard in the middle of the road. An elderly woman was sitting on the wall and the paramedics were attending to her before taking her to hospital. It turned out to be the same elderly woman who attended our meeting and it was she who was driving the car when it turned over.

All agreed that the meeting venue was fine to use for the next meeting which will be on November 19th 2011. The meeting ended at 1700 and five of us stayed for an evening meal at the hotel.

SB – Region 6

Region 1 and 2 Afternoon Tea 16th April 2011

No Speaker!!! How come? Unfortunately the doctors from St. Georges, Tooting who hoped to return a year later to update us all had other commitments and the lady from Department of Work & Pensions could not join us as our meeting was on a Saturday, not a weekday! The lack of speaker contributed to a different type of afternoon. The Carers chose not to have their time together.

The ‘Open Forum’ gave the opportunity for members to share and question. The slot usually given to our speaker was opened by Stephanie and John, with help from Caroline, showing us the new crutches that Stephanie has recently acquired. One of the many benefits of these is that the usual downward pressure on the hands due to the hand grip being vertical is now spread more along a horizontal plane along the forearm as your arms are at right angles, with the hands being out in front of you, not down at your side. Stephanie’s crutches with forearm support also had a flexible ferrule giving better grip. There were many other advantages not detailed here, but I understand details will be available on the HSP Support Group web site or visit www.smartcrutch.com

So many of us sufferers miss the lack of sports activity we once enjoyed. Surrey has a number of sports activities for the disabled, especially in the south west of the county. Nigel spent time explaining the various activities, such as sailing, cycling and bowls he now enjoys. I know a number of the members do partake in bowls, some the wheelchair version. Michael was unable to join us as he was in Chester enjoying a bowls tour. Obtaining insurance / assurance, which is something we are all encouraged to do, can be troublesome and sometimes, unachievable. Ian Smith explained some of the difficulties he was having and has promised to keep us updated.

At our Sunday meeting in November the Doctors from Tooting (Karen and Ajith) will be able to give us an update on their research program. The team have also offered to give us an explanation of how our genes work in respect to us inheriting HSP.

We hope you have a great summer. Take care and look after yourselves. We hope to see you on Sunday 20th November.

Best wishes, Michael and Jane