Our member’s stories
I was diagnosed with MS just over seven years ago after suffering progressive symptoms for several years. My whole left side has been affected and weakened but both legs are weaker, I have spasms of pain and cramp in both feet and legs and my eyesight and writing have deteriorated. My fine motor control in my hands is poor , though the left is worse than the right. The form of my illness is leading to progressive deterioration.
As well as the physical symptoms I suffer from very low self esteem and at first thought I had no future or value. I was in a particularly stressful and emotionally draining job, stopped caring about myself, what I looked like or dressed in etc. – a typical reaction of a person who learns they have MS.
I heard about the oxygen treatment from a friend and how beneficial they found it. After searching for a while I discovered the MS centre in Coventry and the fact that I could try oxygen treatments there. I had had one course of steroids in hospital and benefited from that but was deteriorating again and unable to have the steroids again. I hoped the oxygen might help.
I visited the MS centre and was met by a delightful, professional, supportive body of people. I moved jobs to a far less stressful one and took part in an intensive seven day course of oxygen. The effect was to improve my walking tremendously and I visited the centre weekly for the treatment.
I met with people from all walks of life who meet, chat and are mutually supportive. I tried other treatments such as acupuncture and physiotherapy. The oxygen needed to be at least weekly for me for it to be effective, but I was unable to attend every week because of work commitments. The treatment which has helped me most is the physiotherapy and I am able to maintain that more regularly and can cope with the times it is impossible to visit the centre.
The people who carry out the treatments are kind, caring professionals of high standards in whom one can trust absolutely. The people attending the centre are friendly and caring, mutually supportive and appreciative of the care given to them. The admin and management teams are friendly, helpful, creative and understand the need for confidentiality.
I find that the centre has helped me to regain confidence in myself, not to be too fearful of the future and to appreciate the care, concern and friendship I have received.
Multiple Sclerosis has been a big part of my life for the last forty years; sometimes I can’t believe it myself. There has been a slow, drawn-out deterioration over those long years (plus a lot of depression). That was the position just over ten years ago when a new neighbour moved in next door. One morning she called to say she had recently taken her small handicapped son to a “therapy centre” in Coventry that dealt mostly with people suffering from MS. And she thought perhaps I might find the place had something to offer me. Having heard lots of stories about hoods, masks and oxygen inhaling through pipes, I was very apprehensive. But, with my husband (my carer), we decided there was nothing for me to lose and to give it a whirl. That is how my love affair with MERCIA MS THERAPY CENTRE began.
How wrong I was to be scared. There was a warm, sincere welcome and things took off from there. Now it is a very big part of my life and I look forward to every Thursday when I attend the Centre. As well as the Hyperbaric Oxygen treatment there are a range of therapies to help patients – excellent physiotherapy, osteopathy, massage, reflexology, counselling to name just a few. And the Centre is not just about therapies for MS. There are courses for computer learning, painting, card making...
For me, I have obtained the help and support so badly needed by people with multiple sclerosis. And healthwise I seem to be staying on an “even keel” mostly due, I am convinced, to the oxygen treatment and also to the feeling of well-being that there IS help out there. My spirits are kept up by the support I get at the Centre.
However, there is a downside. There is no financial help from Government so we need to run a constant stream of fundraising activities to pay for rent, rates, light, heating etc for our building. It is an ongoing struggle to ensure the books stay in the black and a big financial worry about keeping such a wonderful place going.
Ralph and Sally
Sally was diagnosed with MS in 1974. By 1983 she could hardly walk, speak, or swallow food, and had lost way too much weight. In 1984, when the Mercia MS Therapy Centre was first established, Sally started having hyperbaric oxygen treatment. Sally has been having the treatment ever since. Sally can eat and swallow, can speak in full sentences and is a healthy weight. Although Sally’s MS has not improved over the years, her general well-being has, and after a session of hyperbaric oxygen she is much more "with it".
There is always someone to talk to at the Centre, it's a real second home for people with MS.
The people at the centre do all they possibly can to raise funds to keep the Centre going. This Centre offers a chance of a better life for people with MS and many other conditions.
Here at Mercia MS Therapy Centre we treat children with cerebral palsy and autism with some excellent results.
Parents have commented as follows:
Mrs Aysha F. Islam
“We are currently treating our son Tareq with hyperbaric oxygen treatment. So far we have brought him in for 18 sessions. Even though the course is not finished we have found that Tareq is calmer and more aware of his surroundings already.
Tareq has Autistic Sprectrum Disorder, and he wasn’t so calm in the first session. We noticed a difference in him only a week later. This is a great initiative that should receive more recognition and appreciation.
We are hoping to continue this treatment and see more improvements to come!”
Mrs Anita Kugelstadt
“My son uses the hyperbaric oxygen (HBO) at the Mercia MS Therapy Centre. The treatment has helped him enormously. Because of HBO he is able to sleep through most nights now, as opposed to waking up for hours on end. HBO has relieved him of his terrible constipation, ending the pain that no other interventions seemed to touch. HBO has also improved his cognitive abilities and we continue to pursue this treatment because I am sure the benefits will one day allow him to speak again.
All of the people that work and volunteer at the Mercia Centre are wonderfully supportive. Children with autism are not always easy to deal with in public, yet everyone welcomes my son.”
Mrs Rachael Hall
“Since Ewan has been having oxygen therapy we have noticed an improvement in all aspects of his health and behaviour. Ewan is more sociable and has started to interact any play with his brother.
He is starting to develop relationships with his peers at school, participating more in class and interacting much better.
Ewan has started to develop much better eye contact since his treatment, this has been noticed by his teacher who thinks it is remarkable, and he is also improving academically.
Ewan’s speech and language therapist says that his speech improvement is astonishing!”
- Before the HBO treatment Rafael moved his arms and legs constantly. He is completely relaxed like a normal child now. His occupational therapist was amazed when she saw it, and she said that the same might be achieved with training, but it would take years, if we actually succeeded.
- His swallowing technique is much better. Before the treatment it took me 1-1.5 hours per meal to feed him. Now it takes 15-30 minutes. It also means he eats 50% more food per day, as the meals are much easier for him. Also his food had to be completely smooth before the treatment otherwise he would choke, but now he can cope with little bits and lumps in the food.
- He sleeps much more. Before the treatment, he slept 5-6 hours per night. Now he sleeps 11 hours.
- His eyes have also improved. Before the treatment his eyes were very sensitive to light, but that’s completely normal now. Also when he looked at you from a distance of 2-3 meters or more, he wouldn’t focus on you, but look next to you. He couldn’t focus unless you were close to him. But now he focuses at all distances.
- His arm movement has also improved. Before the treatment he only moved his arms at his sides, but after the treatment he can now cross his arms in front of his chest.
The fact that he doesn’t use all that energy on his constant movement of arms and legs, the fact that he eats 50% more and he almost sleeps 50% more than before the treatment, hopefully means that he can use all his energy on his development.
Both my husband and I are very happy with the result of the treatment, and we are planning to come back for more in about a year.
Mrs Alison French
“Bethany was diagnosed with Autistic Spectrum Disorder at the age of 2years, 11 months. The main impact of ASD on Bethany was her inability to communicate, she was a very anxious little girl, trapped in her “own world”, unable to verbalise, tolerate touch or even make eye contact. During the school summer holidays of 2011, Bethany began an intensive course of hyperbaric oxygen at Mercia Therapy Centre. After 10 sessions we began to notice positive changes in Bethany, both physically and socially. Her manner was more relaxed and she started to make eye contact. As the treatment continued so did the improvements in Bethany’s ability to communicate. At around 20 sessions Bethany began to vocalise. Since the initial intensive course we have been attending the therapy centre once a week and Bethany continues to benefit from the treatment. She has been making outstanding progress and started mainstream school in September 2012. Many thanks to the staff and volunteers at Mercia Therapy Centre for your support and encouragement.”
Info for Hbot regarding accident
“Our son sustained a Hypoxic anoxic brain injury on August 8th 2013. This happened whilst he was playing in the garden at home. He went underneath the trampoline to get his ball, then stood up and got his head trapped between the springs which caused him to be strangled and without oxygen. His dad found him and released him and started CPR.
He was taken to hospital via ambulance where he was resuscitated and then transferred to an intensive care unit in Newcastle Under Lyme. He spent many days there and then was transferred to Acorns Hospice for end of life care (the doctors/consultants thought that he would not survive). Against all their thoughts he did and then we got him out of Acorns and into a specialist hospital close to home.
It was there that the doctors sorted his medication and started a re-hab programme with him. On being discharged from hospital in January 2014 he had very little control over his movement, very poor head control, we were told that he would not be able to eat orally, swallow, not be able to walk, talk or communicate. He does have very high tone (which is known as spasticity).
Whilst being at home I joined a website called Inspire, on there people post their stories of loved ones who have sustained injuries with the brain and nervous system. I was amazed what people were writing about recovery, one thing that was mentioned continuously was Hbot. I'd never heard of this so I went onto Google to look it up.
It sounded fantastic and as parent’s we are willing to try anything to help our son with his recovery the best we can. My obstacle was where I was going to find such a fantastic therapy, after a lot of researching I found a therapy centre in London, I phoned up the centre and the lady that answered was so helpful, she asked where we were from and told us she was sure there were centre's closer for us. She listed off a number of areas and gave me telephone numbers, the closest one was Coventry (easy access to the motorway network). I called and again they were lovely and so very helpful, offered us a trial session.
I did tell his consultants of our plans to take him to Hbot and the consultants didn’t think it would help him.
We took him for his trial session and have never looked back. He has now had 27 sessions and he has improved so much. He can eat orally (pureed foods), sip juice from his beaker, (he does still have to have the majority of feed through his NG tube) a lot more aware of his surroundings and recognises people, he can move his arms and communicate through noise with us. Generally he is so much more relaxed, he is smiling and has giggled.
The whole journey has been a roller coaster but are proud parents of such a strong little boy and finding such a therapy as Hbot has been such a massive part of his recovery, we plan to keep bringing him to how much more it can help him.”
Zuzana & John Fitzpatrick
We would like to thank so much the lovely staff at Mercia. From the start they have been absolutely fantastic and incredibly patient! They always welcome Oli with a big smile and say hello to him. Considering how distressed Oliver was at the start; I can't imagine going through with it without their dedication and patience.”
A big big thank you!
“My son Oliver was diagnosed with autism on 22 October 2013. We came across oxygen therapy as an alternative treatment. We started our first intensive course (40 sessions) in April 2014. The massive gain for us is his language. From 10 single words to 4-5 word full sentences. Now Oliver is able to communicate all his needs and have simple conservations with us. We are currently doing one session every week and are also having a 2 week intensive course of 10 treatments with thanks to the St James' Place charitable trust. More gain keeps coming gradually. Hbot has been amazing for us.”
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