Page 3 - Welcome
Page 4 - DVLA and Vaccine update
Page 5 - The Big Help Out
Page 6 - Adrian Connock’s story
Page 9 - John Rae’s story
Page 13 - Fundraising round up
Page 14 - Fundraising Ideas - The year ahead
Page 15 - 3 Peaks Challenge
Page 16 - GAINmomentum 2023
Page 18 - 200 Club & Physio
Page 19 - Useful links
Find out how you can take part in #GAINmomentum 2023
Do you have a story you would like to share with our readers? Please email submissions for the newsletter: simon@gaincharity.org.uk
Preferred format: Word document (text only - photographs to be emailed as separate files in jpeg or png format)
Editor: Simon Johnson
GAIN
Glennys Sanders House Pride Parkway Sleaford Lincolnshire NG34 8GL
Tel: 01529 469910 (weekdays 9am-3pm)
Freephone Helpline 0800 374803 (UK)
Residents of the Republic of Ireland may contact us free via email or WhatsApp and we will phone you back If calling outside office hours, please leave a message and we’ll get back to you
Email: office@gaincharity.org.uk www.gaincharity.org.uk
Facebook page: https://www.facebook. com/gaincharity/
Facebook group: https://www.facebook. com/groups/ 727400487277814/
Twitter: @gaincharity (https://twitter. com/gaincharity)
Instagram: gaincharity (https://www.instagram.com/gaincharity/)
Guillain-Barré & Associated Inflammatory Neuropathies is a registered charity, numbers 1154843 (England and Wales) & SCO39900 (Scotland)
The views expressed in this publication should not necessarily be taken as the policy of Guillain-Barré & Associated Inflammatory Neuropathies (GAIN). Whilst every care is taken to provide accurate information, neither GAIN, the Trustee board, the editor nor the contributors undertake any liability for any errors or omission.
Welcome to GAIN Lowdown a new look for the new year! Hosted on our website and edited by Simon, GAIN Lowdown will keep you up to date with all that is going on. For those without internet access a postal roundup will be sent out quarterly.
This will replace the gain4all magazine, which I know many of you enjoyed, but will offer regular updates and news items. GAIN Lowdown will have a larger circulation allowing many more people affected by these conditions to be kept up to date. We hope that you will continue to send in articles that we can include through our various electronic media.
The Trustees have been reviewing the work of the charity, including how we support those affected and how it is funded. The last few years have seen a significant drop in income and considering the current cost of living crisis they had to take the difficult decision to cut one member of staff.
Best wishes,
Do I have to tell the DVLA if I have GBS, CIDP or a related condition?
Short answer Yes! Check out who and how to contact them https://www.gov.uk/driving-medical-conditions
You do not necessarily have to surrender your licence and once you are fit to drive (best coming from a medical professional) you can give DVLA a call and hopefully they will be happy for you to take to the road again.
Is it OK to have seasonal and holiday vaccines?
Short answer Vaccines currently in use are amongst the safest medicines available. However, there is no simple ‘yes or no’ answer, and each person must weigh up the risks of not having a vaccination against the very small possible risk from having it.
Although some neurologists advise people to avoid vaccinations for 6-12 months after onset of GBS, this is purely precautionary. Several scientific studies have shown very little or no causal link between vaccinations and GBS, concluding that vaccinations do not trigger a recurrence and are as safe for people who have had GBS as for anyone else.
Having relatively mild side effects such as numbness and tingling is quite common following a vaccination, and is almost certainly nothing to be concerned about. If you have had GBS in the past, or if you have an associated chronic neuropathy such as CIDP, a vaccination might cause a slight ‘flare-up’ of symptoms due to your immune system being stimulated. Most will only last a few days, but if they last longer than this, or if symptoms get worse or start spreading, then I would suggest contacting your GP. Anyone can report side effects of medication
or vaccines, regardless of severity, and if you would like to do so, please follow this link; https://coronavirus-yellowcard.mhra.gov.uk/
Short answer – it depends on what your condition is, when you were diagnosed, treatments, time in ICU etc.
The simple answer is if you have a chronic condition such as CIDP or MMN then yes they need to know and it may make a difference to the premium. There are many companies that insure a person with a long-term condition without breaking the bank!
If you have had GBS or Miller Fisher, these are both acute and run their course in a few weeks, so you probably do not need to mention it if you had it some time ago. However, they may ask about hospitalisation, any long term medications etc in recent years, which would need an answer.
We do not recommend any particular company but would suggest that you look at a few (maybe using a comparison site) and decide which is the one that gives you the best cover at a price you are happy to pay.
Have any other questions? Call the office on 01529 469910
To mark His Majesty The King’s Coronation thousands of organisations across the country are getting together to give us all the chance to help out in our own local communities.
Starting on Monday 8th May there will be opportunities for everyone to join in. No matter what you are good at, there’ll be something to suit helping hands of all shapes and sizes! From checking in on someone who’d like a bit of company or volunteering for a charity the more of us who join in, the bigger help we will be.
If you can spare an hour…fantastic. The day?… amazing. If it becomes a regular thing, so much the better. If we all do a bit, it will really help a lot.
Help spread awareness for GBS, CIDP & the associated inflammatory neuropathies by taking leaflets and postcards to your local surgeries and health practices.
You can even hand out information at your workplace too!
Use the Big Help Out app to register your interest in volunteering for GAIN. Load the app, skip the quiz and select take action, then find GAIN. We will send you leaflets and postcards once we know you wish to take part! The app is available on the Apple and Android appstore.
Monday 8th May is the Big Help Out day for volunteering, but you can also help GAIN throughout the whole month of May.
Help us to do something amazing. Join in, Lend a hand. Make a change. Head
I was diagnosed with mild GBS in November 2020. The GAIN charity was extremely helpful in providing information and aiding my overall understanding of what was happening to me, but it was quite difficult to find anything which related specifically to the mild form of the condition. I decided that, once I was largely through it, I would share my experience which would hopefully help others in a similar position.
I should firstly define what mild GBS meant to me and cover the diagnosis. Following a routine chest infection, I developed the typical nerve damage which very fortunately only progressed as far as my lower arms and legs; hence it was described by the hospital neurologist as “mild”. I was not given the specific GBS test as it was thought this would do more harm than good. My diagnosis was arrived at via a thorough examination and elimination of all the other possibilities. My blood tests were clear and I had no underlying health condition, with a good level of physical fitness as a cyclist and gym goer.
Clearly, I was extremely fortunate not to develop all-body GBS. There is no explanation as to why my nerve damage stopped in my lower limbs. By the time I was properly diagnosed the main GBS episode had peaked and I was left with the resulting damage. Had I known this was GBS at the onset it would have been incredibly frightening.
I was extremely impressed with the approach of the diagnosing neurologist at my local NHS hospital. However, I was told I would make a full recovery within weeks –unfortunately this was not the case. I went through several months of anxiety fearing I was not making the expected progress, before being assured later I was doing OK and symptoms would probably continue for up to 2 years.
Although “mild” in comparison to full GBS, the discomfort severely affected my life for several months and I only resumed normal exercise at around 5 months. I had recently retired, but estimated I would have been off work for more than 2 months, and then a rehabilitation period would have followed (office work).
My initial symptoms were tingling in my hands, general weakness, numbness in hands and feet and loss of balance. I was very carefully monitored by my local GP in the early stages, who suspected GBS.
During the development phase I had severe pain all over my body, particularly in my back and neck and did not sleep at all for two weeks. I progressed to the strongest painkillers to try to get some relief. Darkness was much worse than daylight hours, when I felt there was some respite, and this continued to be the case throughout. I remember dreading the sun going down and still get this feeling in the darker months.
As the back pain resided after around 3 weeks, I was left with extremely painful pins and needles, particularly in my lower legs which felt as if on fire, accompanied with numbness. I had the same feelings in my hands but somehow this seemed easier to cope with. I was now getting 2-4 hours broken sleep with the help of the painkillers and there was very heavy fatigue.
I was determined not to lose too much muscle strength and after a month or so I
got myself out for a 20 minute slow walk most days and I even washed the car. Ever increasing burning sensations in my feet and lower legs as I walked prevented any more, and invariably I would return home to sleep after any activity. I recorded at the time that any further exercise did not feel manageable or beneficial. I was still very numb in the lower limbs and it was like walking on stilts! I also recorded that I could not climb a small step ladder for fear of losing balance. I tried an exercise bike but intense pins and needles put a stop to this.
At around 2 months I was starting to sleep more normally and this was of great benefit to my general fatigue and well-being. I was now able to walk slowly for an hour before the pain stopped me abruptly and I started some modest strength exercises, albeit this proved a little too soon.
At 3 months, without any tangible progress and the restricting nature of my general discomfort, particularly in my feet, I was facing a mental battle and becoming impatient and worried. In truth recovery was barely perceptible day to day, but it did help to keep a diary and compare with a few weeks previous when recovery could become more evident. I visited a private neurologist who advised me that I was indeed making excellent progress and that symptoms would likely persist for 2 years.
I was still taking the strong painkillers at night but was advised to try medication more suited to blocking nerve pain. The neurologist also explained how my damaged nerves were affecting me by sending the wrong messages to my brain, and this really helped me cope with future discomfort. I also found it reassuring that, as I had no other underlying health conditions likely to delay my recovery, I should continue to progress.
At 4/5 months I was able to resume cycling which was a big milestone for me. It felt something like pushing my feet onto a bed of nails at first, but if you are a cyclist, you will know that it is possible to make your upper legs ache more than anything else,
which I did! At 8 months I was due to take part in a 100-mile event, but this would have a been a step too far and I postponed for a year.
As I write now it is 15 months since my episode of mild GBS. On reflection, the intervening period was one of slow but steady progress. By around 9 months I was able to say that my condition did not stop me doing anything I wanted. I will be doing my 100-mile cycling event in 4 months. Mild symptoms persist - some numbness and low-level pins and needles in the feet – but I am able to say there are long periods of the day when I do not notice it. I still take medication to remain comfortable in the evenings, although I do hope to wean myself off this in the next few months. I have the warmer months ahead now, which seem to help matters, and I remain optimistic that I will feel more or less normal at around 2 years from the onset.
As I write now it is 15 months since my episode of mild GBS. On reflection, the intervening period was one of slow but steady progress. By around 9 months I was able to say that my condition did not
stop me doing anything I wanted. I will be doing my 100-mile cycling event in 4 months. Mild symptoms persist - some numbness and low-level pins and needles in the feet – but I am able to say there are long periods of the day when I do not notice it. I still take medication to remain comfortable in the evenings, although I do hope to wean myself off this in the next few months. I have the warmer months ahead now, which seem to help matters, and I remain optimistic that I will feel more or less normal at around 2 years from the onset.
I guess all cases will be different, as will the severity of GBS and in relation to any other health conditions. That said, I hope this gives you an insight into a lesser form of GBS and what it might mean.
My tips for getting through it are as follows:
Staying informed and receiving appropriate and timely medical consultation is as important to your mental state as it is to your physical health. I got over anxious as a result of a lack of understanding and unrealistic expectations as to my rate of recovery.
Any medication you are prescribed should help, may not be instant, and hopefully it won’t be long term. I hate taking pills and have tried to stop too early on several occasions.
Stay as active as your body feels is right, but don’t rush it as too much seems to set you back. Gentle short walks was all I could manage for a long time. When I resumed strength exercises, I could not manage more than 2 press ups, but over the course of a year I have been able to gradually regain my previous levels of strength and fitness. I cannot say for sure if exercise aids recovery based on my experience, but I would like to think it does, and at the very least will improve your confidence and well-being.
I tried to eat as well as possible as I felt this should aid recovery, as does good sleep. Whilst often tempting, I found that even small amounts of alcohol madesymptoms worse
for me and the neurologist confirmed this was the case.
A minor tip, but having shoes you can slip off easily can make sitting in a pub or restaurant more bearable when your feet start to hurt! I experimented with various types of shoe/footbed – soft is not necessarily good. The best I found was the Birkenstock traditional cork which is fairly firm but anatomically designed. Thick socks or high pile materials were not comfortable for me.
Maintain a weekly diary of how you feel, sleep patterns, progress with exercise etc. There will be times when you will feel very despondent about how this is holding your life back, particularly if you are a very active person, and there does not seem to be any progress. By looking at how you were say a month previously, you will often realise something has indeed improved. It’s a slow process that it is not evident day to day, as it would be with a normal short-term illness, and this point requires a period of acceptance.
You will inevitably be indoors a lot, particularly if your recovery is through the colder months as mine was. Rest as much as you need to, but some form of mental stimulus is important.
I never had this problem, but it occurred to me that work rehabilitation would have been something I would have needed to manage safely and carefully. If your work is physical or requires good balance or dexterity, this will be brought more into focus. I personally found hand writing and keyboard orientation quite tricky for several months and still remain wobbly in situations which require good balance and careful feet placement.
Overall fight to stay optimistic, don’t allow impatience in and focus on again being able to do the things you love the most!
Contact GAIN if you would like your story shared in the next issue of GAINLowdown or on the GAIN website.
office@gaincharity.org.uk
or call 01529 469910
This is my story about recovering from Guillain-Barre syndrome (GBS) after contracting the very rare illness for the second time at the age of 87.
I decided to share my story (with some help from my family) to give hope and inspiration to others with GBS that they too can recover as I have done on both occasions.
My first diagnosis was in 1993, aged 59. On that occasion, doctors diagnosed it very quickly and none of my family had ever heard of GBS. I was transferred to the Neurology Unit at James Cook Hospital, Middlesbrough where I spent about eight weeks in intensive care. I was almost totally paralysed apart from being able to open my eyes and move my head very slightly and required a ventilator for several weeks.
Thanks to the wonderful doctors and staff at James Cook, I gradually regained movement of my arms and legs and body strength and after a rigorous rehabilitation programme, I was able to return to work in the motor trade about six months after falling ill. It took about a further three months to make a full recovery. It was the first time I’d been off work since leaving school.
By John RaeFast forward twenty-eight years to Saturday 9 October 2021, I got out of bed looking forward to Hartlepool United’s home match against Northampton Town. I felt a bit dizzy/ unstable when I stood up which was not normal and after struggling down the stairs, I started to get a tingling feeling in my fingers. I was also quite breathless.
My wife realised that something was wrong and contacted my two sons and daughter. That morning my balance and ability to walk quickly deteriorated but I was refused an ambulance after calling 999 as they said I didn’t meet the criteria.
My family subsequently took me to the local Urgent Care centre, and they suggested I went to the Emergency Assessment Centre at North Tees Hospital, Stockton-on-Tees. Family members immediately thought it could be GBS as the symptoms were very similar to the previous time. They highlighted this to medics, but surprisingly some were unaware of GBS.
Diagnosis on this occasion was not as quick and I deteriorated quite rapidly over the next couple of days and my oxygen levels were dropping. Three days after being admitted, I was eventually transferred to the Neurology Ward at James Cook. At this point I had lost all of the movement in my arms and legs, I therefore couldn’t feed myself and was struggling to speak.
My family were relieved that I was back at James Cook Hospital as they helped me make a full recovery almost three decades earlier with their specialist treatment and care which my family and I will always be eternally grateful.
The first question my family asked the doctors on the Neurology Ward was whether I could make a full recovery from GBS at the age of 87 and the response was an unequivocal ‘Yes’. This gave reassurance to my family which was clearly a worrying time for them.
As with most GBS patients, I received a five-day treatment programme of intravenous immunoglobulin treatment and my condition soon started to gradually improve. Within a couple of weeks, the movement in my arms and legs was much improved and I was able to feed myself again. I couldn’t walk at this stage, but I was able to be hoisted into a chair.
I get the impression that GBS diagnosis is not ‘black and white’ and there are several variants of it which probably makes diagnosis harder. During my early days in hospital, my family asked the doctors a few times whether I definitely had GBS - they wouldn’t commit but said I was being treated for GBS. One of the procedures to try and determine GBS is a lumbar puncture but mine took a couple of attempts – presumably because of my aging spine.
My mobility and strength continued to improve and after about four weeks I was transferred to the Rehabilitation Ward where I spent each weekday in the gym undertaking a range of strength and fitness exercises. Patients would often undertake tasks in teams such as hoopla and bowling which created a bit of fun and friendly competition.
I would also regularly go in the hydrotherapy pool to aid my recovery.
Due to Covid, visiting was intermittent, and it was halted at short notice on occasions. However, staff on the ward always made sure that I could speak to my family over the phone which helped me enormously and kept my spirits up. Doctors and staff at James Cook Hospital were very quick to inform my family of any developing issues and my family always found it easy to speak to staff to get regular updates which is so important.
The numerous tests and scans undertaken whilst in hospital also revealed a couple of less serious health issues and as a result, I now receive daily medication for them. I also lost quite a bit of weight in hospital, but medics put this down to the strict diet and muscle reduction due to me being inactive for several weeks.
Christmas and New Year passed, and the rehabilitation programme continued, and a discharge target date was set which was a significant boost. Whilst in hospital, I also had a catheter fitted for several weeks. After a few attempts this was successfully removed before I was discharged which was another plus.
As the weeks in the Rehabilitation Ward went on, the intensity of the physiotherapy increased. Physios remarked to my family that despite my age, I was the most committed and determined patient on the Ward and this contributed to me being able to be discharged four and a half months after I was admitted.
It was with great relief and joy that fellow patients and staff watched me walk out of the hospital to go back home to Hartlepool to my wonderful family. Whilst in hospital some adaptations were carried out at home. The bath was replaced with a shower which is much easier for me, and Hartlepool Council have installed a stairlift and a few other adaptions to help keep me and my wife safe. Regardless of GBS, we were probably at the stage in our lives when we needed those adaptations anyway.
The one advantage of getting GBS for a second time is that I knew what I was dealing with and understood the challenges that lay ahead.
When I got home the physio continued with home exercises and I had a few weeks of community physio. Over the weeks and months my strength and mobility continued
to slowly improve, and it wasn’t long before I started to resume some kind of normality. I had a minor setback a few weeks after getting home when I contracted Covid but thankfully I recovered after a couple of weeks.
Seven months after falling ill, I was back at Hartlepool United for the last home game of the 2021/22 season against Colchester United when I was welcomed by one of the players, Neill Byrne which was lovely.
A further three months down the line I was back playing a few holes of golf.
The main thing I struggle with ten months on from the diagnosis is that I can’t climb stairs like I used to but given my age, I can’t complain.
Finally, I want to thank my wonderful family who have been by my side every step of the way during my GBS journey. Their unwavering love and support and words of encouragement have been immense, and I am very fortunate to have them.
I would also like to thank Hartlepool-born Jeff Stelling, local radio presenter Paul ‘Goffy’ Gough and everyone else for their messages of support, along with fellow James Cook patient John Hills who was in the next bed and helped me get through this.
Would you like to join the newly formed Scottish Virtual Branch meeting to be held on Zoom?
Use this link to register your interest and the GAIN team can provide you with a link to join: We hope to see you there!
Congratulations Caroline, you successfully raised a marvellous £1218 whilst running the Great North Run, 10 years on from your diagnosis of GBS!
Danielle hosted her very own bake sale and sold GAIN pens and notepads in her hair salon to raise money for GAIN, whilst distributing postcards and leaflets with information about GBS, CIDP and the associated variants. If you would like to do something similar, please contact us.
THANKS DANIELLE!
During March 2021 I was admitted to hospital with Guillain Barre. I was left with full facial paralysis and could barely walk. Luckily I was given treatment quickly and was able to make a full recovery, but not everyone is quite so lucky. GAIN helped me with resources and knowing that I wasn’t alone, so I would like to give back.
James ran the Richmond Half Marathon, on September 11, 2022 following a diagnosis of GBS in March 2021.
Thank you James for your wonderful efforts, you raised a fantastic £1070!
Jake ran the Windsor half marathon in September 2022 following his mother’s diagnosis of CIDP to raise funds and awareness for GAIN.
You did amazing Josh, completing the race and racing a whopping £720! Thank you so much!
My dad George was struck down with Guillain-Barré syndrome on the 18th of July 2016 which left him totally paralysed with a tracheotomy, on life support systems and being fed via PEG tube.
For a couple of months he was locked in his own body unable to speak or communicate with anyone. His hearing and mind were fine but he could not speak or move any part of his body. For someone who had always been fit and healthy this has been very hard for him and for the family to deal with. He spent several months in Intensive care units and in specialist rehab units where he was weaned off a ventilator and had the tracheotomy removed. He came home on the 31st of October 2017 where he still to this day has 24 hour care. He is improving all the time but still cannot stand, walk or feed himself.
GAIN were very good to my family and helped a lot with information and towards petrol/travelling costs to see my dad as my step mum Doreen visited him every single day to see him.
Congrats Justin, you raised an unbelievable £1797.90.
THANK YOU!
Josh ran 100k in August 2021 to raise money for GAIN following his friend Fiona’s diagnosis of CIDP.
Great work Josh, you raised an excellent £375!
HAVE YOU TAKEN PART IN AN EVENT FOR GAIN? LET THE TEAM KNOW SO WE CAN SING YOUR PRAISES IN THE NEXT ISSUE OF GAIN LOWDOWN.
Good luck to our GAIN runners this year, thank you for choosing to support the charity! We have one spot available for 2024, we will update our website and social media platforms to announce when people can apply for it.
60,000 determined and dedicated runners make the AJ Bell Great North Run the World’s biggest and best half marathon. GAIN have 5 charity places remaining and Simon will be participating again this year! Please contact the office if you are interested in a spot.
The South coast’s biggest and best running event takes place in Portsmouth over a fast and flat 10 mile route.
Unfortunately, GAIN do not have charity places this year but entry places are £46 for adults.
Try the Tough Mudder 5K obstacle course and shake up your boring 5K run with Tough Mudder’s world-class obstacles.
Get your friends together and make a Tough Mudder 5K your next team challenge.
Kiltwalk is Scotland’s favourite mass participation walking event where you can raise funds for ANY charity close to your heart. With four amazing locations and a variety of walk lengths to choose from, there’s a Kiltwalk for everyone! Why not give it a go for GAIN?
The team on the bus on the way to their Three Peaks Challenge
In the space of a year, Vee Duffy’s family encountered GBS twice. Her mother, Ryalla Duffy had GBS in March 2021 and sadly passed away, followed by her son Levi-George Holland getting GBS later that year. Sadly, their 21 year old brother Absy died on 8th July in a tragic car accident.
Due to what they thought was stress and upset Vee’s son Levi-George best known as LG suddenly became ill just as his granny had so they contacted the doctor and within hours he was admitted at Queen’s Medical Centre at Nottingham, where he became very poorly and eventually fully paralyzed.
He was there for weeks and weeks until he got moved to Lincoln where he underwent intense physio to regain movement, his sheer determination and with love and prayers from thousands he made a full recovery and was back walking within 2 months.
To honour Ryalla Duffy and help raise awareness for GBS, Vee, her son Levi-George and their friends and family put a team of 16 together to complete the Three Peaks Challenge, walking up Ben Nevis, Scafell Pike, and Snowdown in 36 hours between Friday 17th June 2022 and 19th June 2022.
Also a special thank you St Botolph’s church for hosting a coffee morning to help with LG and Vee’s fundraising efforts.
The efforts of this community totaled a little over £11,000, much of which was in cash and counted at their Yard over a cup of tea and a good natter with Vee’s family. Here’s Caroline presenting the cheque with LG.
CONGRATULATIONS AND THANK YOU, LEVI-GEORGE AND THE GYPSY TRAVELLER COMMUNITY RAISED A FANTASTIC
£11,000!
To read the Traveller’s Times full article on their amazing efforts with pictures from the challenge, head to their website using this link:
https://www.travellerstimes.org.uk/news/2022/09/loving-memory-his-granny-ryalla-duffy-levi-george-completes-charity-mountain-hike
Here’s how you can help raise awareness for GBS & CIDP throughout May
GBS & CIDP Awareness Month runs from 1-31 May, we want you to challenge yourself to be active whilst spreading the word of GAIN!
Whether you can manage a 10 metre walk or a 10 km run, a bike ride with friends or lap round the park in your wheelchair, we would love to see you getting involved.
GAIN will provide you with an awareness pack containing leaflets, postcards, posters and banners as well as a GAINmomentum T-Shirt to wear during your activites. You can set your own challenge for the month and track it using the GAINmomentum activity tracker included in your pack. Maybe run or walk everyday of the month, or ride a horse every weekend of May, do whatever you wish but make sure you track it!
Please contact the office to register your interest by April 30th to get your free awareness pack and T-Shirt
PARTICIPANTS WILL GET A MEDAL AT THE END OF THE MONTH TO THANK THEM FOR THEIR INVOLVEMENT
JOIN THE TEAM TO CELEBRATE AT THE GAIN OPEN DAY ON JUNE 2ND FROM 11AM. EVERYONE IS WELCOME!
FOOD AND DRINK PROVIDED FREE PARKING OUTSIDE
BE SURE TO JOIN THE GAINMOMENTUM STRAVA CLUB TO TRACK YOUR ACTIVITY.
Search GAINmomentum on the clubs section.
You can run 10 metres or 10k, whatever you can manage. Join a Parkrun and run with other people or use the NHS Couch to 5k to get you up and out there.
You can walk or you can roll wearing your GAINmomentum T-Shirt.
Why not host a gathering of friends and family in the garden? Make cookies using the tortoise cookie cutters available in our online shop. (Be sure to share them!)
Play a round of golf or have a game of bowls and collect funds for GAIN.
Hand out leaflets and put postcards in shops or your local library. Take information packs to your local surgery or hospital.
Use your online guide videos and physio equipment to be active every day of May, keeping track of the activities you have done and sharing them on the GAINmomentum Strava club!
Type
Set up a fundraising page alongside your activity
On your desktop, click on Select nonprofit, or on a smart phone, click on Raise Money, then Charity Enter
Fill
Thanks to those who participated in previous years, hopefully you’ll be inspired to take part again.
Feeling lucky? Then join the GAIN 200 Club!
The GAIN 200 Club is a fun and simple way to raise funds for GAIN, whilst at the same time offering members the opportunity to win monthly cash prizes.
The more people join in, the bigger the pay-out, so spread the word to family and friends and get them to buy a number too!
Don’t miss out! Register anytime and be entered for the next 12 draws.
Taking part costs £20 per number for the whole year which can be paid in one go or over two instalments of £10. You can join at anytime and will be entered in to the next 12 draws.
The takings are split 50/50, with 50% forming the prize fund and 50% supporting our charitable objectives.
Three cash prizes are awarded each month. First prize 40% of the monthly prize fund, plus two runner-up prizes of 20% each. The remaining 20% is carried forward to a bonus draw in November.
On the 2nd Wednesday of each month (from April 2021), the winning numbers are drawn. Winners will be notified, and the winning numbers will be listed on the website, on our social media platforms and in the newsletter. Participants must be 18 or over and resident in England, Scotland or Wales. (Due to gambling regulations, this draw is not available to residents of Northern Ireland or the Republic of Ireland.)
Please gamble responsibly
#BeGambleAware
https://www.begambleaware.org/
Sign up today before Wednesday 10th May to be in the next draw!
To help with community rehabilitation service availability, GAIN commissioned a series of physiotherapy videos, which can be accessed online, in the comfort of your own home, and at a time to suit you.
If you are recovering from GBS or an acute variant, and have been recently discharged from hospital, or if you are living with a chronic variant such as CIDP and are struggling to access community physiotherapy services, then let us know. You must have an email address and access to a device suitable for viewing, such as a laptop, smart phone, smart TV, etc.
It’s free of charge to our members, but there is a cost to the charity, so we need a few details from you, such as your name, contact details and diagnosis, etc. Once we have those, we will create a log-in and send you a pack containing including hand putty, resistance bands and everything else you need to get started.
Please email us at office@gaincharity.org.uk or phone 01529 469910 during office hours for further information.
If you are having difficulty accessing community physiotherapy, GAIN can help
Other societies and charities that can help when you, a family member or a friend is in need.
INDIPENDENT LIVING -
https://www.independentliving.co.uk/
Independent Living – the place for impartial information about products and services to help with mobility and independence. Whoever you are – OT, physio or other health professional, family carer, individual with a disability, Independent Living can provide the advice you need.
turn2us -
https://www.turn2us.org.uk/
Turn2us helps people in financial need gain access to welfare benefits, charitable grants and other financial help – online, by phone and face to face through our partner organisations.
ACAS -
https://www.acas.org.uk/
Acas gives employees and employers free, impartial advice on workplace rights, rules and best practice. We also offer training and help to resolve disputes.
MIND -
https://www.mind.org.uk/
Even though 1 in 4 people have mental health problems, most of us don’t get the help we need. This has to change. We’re Mind. We’re here to fight mental health. For support for respect, for you.
The Brain Charity -
https://www.thebraincharity.org.uk/
We help people with all forms of neurological condition to lead longer, healthier, happier lives There are more than 600 conditions affecting the brain, spine and nervous system. We champion neurodiversity and provide practical help, emotional support and social activities for every single one.
Social Services -
https://www.gov.uk/apply-needs-assessment-social-services
Apply for a needs assessment by social services. A health and social care assessment is carried out by social services to find out what help and support you need - like healthcare, equipment, help in your home or residential care.
There are many other great charities and organisations out there who can help, the GAIN team are always happy to signpost to where you need to be.
