My experience of pregnancy- Karen Pritchard

I was diagnosed with Hereditary Sensory Motor Neuropathy as a teenager. In 1999, after further tests my diagnosis changed and I was then diagnosed with Distal Spinal Muscular Atrophy (SMA). In 2007 I gave birth to a baby boy.

I had a normal healthy pregnancy and the Consultant did not detect any abnormalities whilst I was pregnant. I was using my wheelchair at the time. I had a planned caesarean section at 39 weeks and was safely  delivered a baby boy. As you can imagine I was relieved when the heel prick test at birth (for MD) came back all clear.

I must admit I didn’t really think about passing on my condition and Evan showed no signs or symptoms. I was told to “go and live your life”. I do sometimes worry though if things might manifest  themselves as he becomes a teenager.

When I was pregnant I concentrated on getting through the pregnancy and did not really have any plans in place for afterwards. I didn’t really think my disability would affect me that much. I came down to earth with a bang. It was hard both physically and emotionally. I had a new baby to look after, was recovering from the birth and was also trying to cope with on-going pain from my condition. I suffered with postnatal depression and found it very debilitating. I found it really hard just coping day to day and looking back, feel there were times when I didn’t really live life but just existed. It got to the point that I had to spend some time in hospital. My husband Alan was a constant source of support.

Thankfully I had a good midwife and was referred to “Home Start”. I found this service so helpful and the person that I was allocated was fantastic. She helped me with all the practical things and as Evan got older she was such a valuable support for me. We had a good relationship and even though I no longer receive this service the lady and I still meet up as friends regularly. I sought much support from NMC and this was invaluable and got me through some really tough times. I was in touch with other women who had suffered postnatal depression, and it was great to be able to seek support from people who really understood. I also gained knowledge and advice through groups including PANDAS *and NETMUMS * which I found really helpful.

The pregnancy did take its toll on my body and as a result my body has become weaker. However, having a child was the best thing my husband and I ever did. Evan inspires me and when I am having a bad day and in pain he spurs me on! He is a grounded person. Kids get it and understand your circumstances.

My advice to others thinking about a possible pregnancy would be to try and plan ahead and think about the support you might need once the baby is born. Do not be afraid to ask for help and support. It is far better to do that, than feel lonely and isolated. Do remember that your mental health is important too!

Grab the opportunity to enter the world of motherhood with both hands – Dawn Wilbur During my life I have always had the attitude that dreams can become reality - barriers can be broken. I’ve had 2 babies. A stillborn baby daughter called Sky in February 1995 and in 1992 an incredible baby boy, Graham, who is now 12 years old. He is my greatest ever joy on earth. Both babies were born prematurely due to a condition called pre-eclampsia This was not connected with my condition Spinal Muscular Atrophy (SMA). Sky was born naturally and Graham by caesarean section.
Fortunately, in the early stages of pregnancy, I was able to benefit from weekly swimming sessions and regular physiotherapy sessions.

During my pregnancy with Graham, I had an amazing obstetrician who supported my husband and I throughout the pregnancy. Although my lung capacity is almost half that of a lady unaffected, I had peace of mind as I had regular lung function appointments at North Staffs. The reason for having Graham there was precautionary in case my lungs became problematic. On 4th October everything went really smoothly. Graham was born at North Staffordshire Hospital and went straight into the Special Care Baby Unit (SCBU). A couple of days later he was transferred to Chester SCBU as this was nearer home. For the first two weeks we visited him daily, then we stayed at the hospital for a week, in a room with Graham. This was perfect as they taught us first aid, bathing and many new born baby parenting skills. Once Graham had gained adequate weight we were able to bring him home. That was just a wonderful moment. The midwives from SCBU visited us regularly and then subsequently the health visitors.

I became a member of a national postnatal group and a local mother and toddler group. I mainly sourced information from other parents and I also joined some pertinent websites.
Pregnancy with a physical disability - www.apa.org

*Homestart – www.home-start.org.uk  - A nationwide organisation that offers help/ a companion to parents who have a disability.
*PANDAS – Pre and Post natal Depression Advice and Support www.pandasfoundation.org.uk

Next Steps
If you would like to speak to someone at NMC who has gone through a pregnancy, then please contact Sue Walker at NMC in the first instance. Tel. 01606 860911

Pregnancy, my experience – Louise Berry-Corbett

I am a physio client at NMC and was initially diagnosed wth Limb Girdle Muscular Dystrophy.
In 1999 I had my first child and a couple of years later I was diagnosed with my condition. What prompted the diagnosis was that one day when I was carrying my son in a baby carrier, I fell whilst out walking, and my son nearly hit his head on the kerb. It really scared me and I got quite frightened. I was obviously concerned about having another child but was told that the risk of having a child with limb girdle muscular dystrophy (MD) was very low indeed.

With a forthcoming pregnancy, I was advised to change some of the medication that I was talking for my md, as they could have a potential damaging effect on the baby. I had a normal pregnancy, but the pregnancy did put a lot of strain on my back.

The specialist was worried about me having a natural birth because it could really tire me out and put additional pressure on my back. However, a caesarean section would also take its toll on my body. It was a bit of a catch 22!

At 37 weeks I was induced, my waters broke and I had an epidural. The surgeon checked that it was okay for me to deliver the baby naturally. I had 2 midwives and the baby, a little girl, helped push herself out! There was also a specialist team on standby just in case.

Afterwards, I could not really get up and down and holding her was quite difficult. Unfortunately it wasn’t possible for my partner to stay so he had to sleep in the car! I found that the staff did not really cater for “disabled” mums and the extra support that they might need. When I came home I had plenty of help from my partner and my family which made a big difference.

My baby, Lacey is now 3. She’s absolutely fine, although as you can imagine I watch her like a hawk! I have decided not to have any more children because I do not feel physically strong enough. My body has weakened and it would not be fair to consider another pregnancy.
My advice to others is

• Do not be afraid to ask for help.
• Ask the hospital how they will help support you and / or your partner.
• During the pregnancy think about taking well-being pregnancy vitamins.
• Remember it can take your body a lot longer to recover from pregnancy than someone who does not have muscular dystrophy.

I would still like to know what sub-type of muscular dystrophy I have. Earlier this year another muscle biopsy showed dystrophy in the muscles. I have now been referred for an MRI in Nottingham and if that doesn’t prove conclusive then it will be genetic testing. I would like to be able to pass this information on to my children.

Pregancy

Starting a family? Thinking about starting a family is a very exciting prospect but it can also be daunting. Any prospective parent worries about how they might cope, but these worries can be compounded when you have a disability.

Seek support The most important thing is to talk things through with your partner, and seek advice and support so that you can make an informed choice about a possible pregnancy. You might contact your doctor, specialist consultant or may decide to have genetic counselling. It is also a good idea to speak to others who have gone through a similar experience.

Remember that being an “independent” parent does not necessarily mean doing things on your own. Being “independent” could mean that you need someone else’s hands to do the practical things for you. You can instruct others as to how you would like things done, whether that’s a PA, a friend or a family member.

Here at NMC they are several clients who have gone on to have children despite their disability. Deciding to have children is a big decision, even more so when you have a disability, but with the right advice, support and equipment, in most cases it is possible. Tanni Grey Thompson and Alison Laper are examples of parents with a disability who have shown that it can be done!

Disability, Pregnancy & Parenthood (DPPI) A charity that promotes better awareness and support for disabled people during pregnancy and as parents. A free and confidential enquiry service.Tel 0800 018 4730 email: info@dppi.org.uk Web: http://www.dppi.org.uk/ about.php

Live Life – Marc Chapman

I have written this article to show that life with a disability isn’t all doom and gloom! I believe we are the same and can do the same as anyone. I’m proof of that and I have never let anything get in my way preventing me from doing something.

I used to go to Hebden Green School (next to the NMC). When I was doing my GCSE’s, I didn’t get the results that I wanted in Maths and English and ended up with a D in English and an E in Maths when I needed a C or above. I thought this would ruin my chances of getting to college.
However, whilst at school I started coming to the NMC and studied Graphic Design which I very much enjoyed. I achieved an NCFE Level 1.

Inspired by my success in Graphic Design I moved on to college and studied BTEC Level 3 in Moving Image (Film and TV), where I achieved a Distinction. I also continued with functional skills in Maths and English.

This just proves that if you don’t get the grades at school it isn’t always the end of the world. There’s nearly always a way round it and you can end up being successful.

During my time at college I still carried on coming to NMC for physiotherapy. It kept me fit and healthy and was a huge boost to my well-being.

Although my next step was to pursue a HNC course at college, the course did not run, due to being under-subscribed. So I took a gap year. I have kept myself busy. I approached Matthew at NMC who was able to offer me some work experience with the Design and Print team on Wednesdays. I have loved every minute of it and never looked back. The camaraderie is second to none.

I have regular physiotherapy and I have started doing a web design course in training which I have also really enjoyed.

Coming to the NMC is a big part of my life and it provides me with the opportunity to socialise with many like-minded people. If I have any problems with my ventilator or wheelchair, someone in the building will have a solution, which puts your mind ease. I have made some good friends along the way, so I would definitely recommend the NMC to anyone with muscular dystrophy!

University, work and independence - James Taubman

I am a 23 year old business graduate originally from North Wales. I have Duchenne Muscular Dystrophy which I was diagnosed with at birth. I have used a wheelchair ever since I was 12 years old.

University
In 2013 I graduated from Glyndwr University in Wrexham with a BA in Business Marketing (2:2). The assessment consisted of coursework, examinations, group work and presentations. Attending university was a really enjoyable 3 years both from a social point of view and an educational aspect. The facilities and services for disabled students were very good.

Work Experience and Training
The NMC has given me with vital work experience, which was the initial reason that I made contact. Fresh from graduating from University, the NMC have provided me with a platform to gain new skills, which have included learning database software, speaking at events, marketing tasks such as creating product packages, and I recently began a graphic design course in-house.

I work at NMC as a Database and Marketing Assistant, and my main role involves assisting in the management of all the NMC databases. Joining and being part of NMC has brought so many benefits.
My condition has a physical impact on my work ability in the following ways;

• Difficulty in using standard desks
• Using a keyboard to type is a  struggle  - Drinking and eating  - Using the toilet.

NMC services that help me include;

• Height adjustable desks throughout the building  - Providing computers or laptops with on-screen keyboard devices 
• Care assistance with eating,  drinking or anything physical  - Providing unique and specialist physiotherapy
• Fully accessible toilets and rooms with hoists
• Helpful support and advice  about the condition or just general matters
• Work experience and training motivation.

Physiotherapy & Exercise Prior to attending NMC I had not received any physiotherapy since school. I now have physiotherapy once a week, which helped me physically and mentally. This treatment also allows me to access the specialist equipment including the exercise arm and leg pedals and tilt table beds to stand supported.

I find the Neuromuscular Centre a great and welcoming place to visit. It provides a sense of community with an enjoyable work environment that is professional and highly sociable at the same time.

Independent Living
I live in Chester City in my own apartment with 24 hour care. Many of the people that help care for me are friends that I have met, so we are a close knit team. Whilst at university I began my care package with a care agency. However, after a year we switched to direct payments which has proved easier, providing me with more choice over who cares for me.

Leisure / Driving
I did attempt to learn to drive and had several lessons with an instructor in an adapted vehicle. However I felt it just wasn’t for me. This hasn’t stopped me getting around as I have a Motability vehicle which my PA drives. I have travelled abroad around Europe, USA & Canada, the most memorable places being Amsterdam, Toronto and New York.

I enjoy nights out with friends, going to the cinema, music concerts, days out/walks and eating out. One of my big passions is football. I‘m an Everton fan and also a season ticket holder so I go to home games. I have also been to Wembley twice.

New Transition Team – Cheshire West and Chester

Cheshire West and Chester Council has set up a specialised team to assess the needs of young people with disabilities and arrange appropriate support for them and their families. These young people aged between 16 and 25 years old, may have physical and/or learning disabilities or sensory impairment. The team will ensure that each has their own plan, setting out the steps required for a smooth transition from children’s to adult’s care and support services. Comprising seven full time staff, the team will work closely with the Council’s social care services and Special Educational Needs teams to ensure that every disabled young person has opportunities for paid employment, the potential to live independently, good health, and develops the skills to form friendships, relationships and be part of his or her community.

Councillor Brenda Dowding, Executive Member for Adult Social Care and Health, commented: “The new service recognises the need to target support to those families who have disabled children growing up to adulthood. By concentrating on the needs and wishes of the young person, we aim to put together a personalised plan which nurtures potential, opens up a range of new opportunities and reduces stress for families at a critical part of a young person’s life. “

Councillor Mark Stocks, Executive Member for Education and Children, commended the development as, “Emphasising what can be done when key services work together, putting the wellbeing of the young person at the centre of planning for their changing and future needs, so that they get the very best possible start in life.”

For further information contact: Louise Hill, Senior Manager,
Disabled Children and Personal Budgets. Tel. 0151 337 6300
Keith Evans, Senior Manager,
Prevention and Wellbeing Tel. 01244 972990
Samantha Williams, Senior
Practice Lead/Practice
Manager Tel 01606 271939

Thiara Begum

In 2006, shortly after giving birth to my son, I was diagnosed with Pompe Disease, a rare progressive metabolic disease. This led to the break-up of my marriage and depression.

In 2006, I began using a wheelchair whilst outdoors. I was also using sticks and a walking frame.
Even before the diagnosis and particularly when I was pregnant, I was struggling to climb the stairs and get up from the floor. I think I knew that something wasn’t quite right. After my son Adil was born I found things very hard both physically and mentally. I suffered from post-natal depression. Eventually I found a childminder for Adil for a few hours which gave me a break.

Over the years I have tried my best to give my son the best childhood I could, but this was not easy. As time has gone on, my health has continued to deteriorate. I never thought of myself as “normal” and I had no self-confidence at all. Day after day I would continue to fear for my future, as I knew that I would continue to get weaker.

Furthermore, I felt that because my family had been so protective of me, I had never gone out of my “comfort zone”.

I have had muscle weakness in my legs for many years and although I struggled to stand up, at one time I was able to walk holding onto things. However, I was not given the opportunity to have a go in case I fell, and instead things were done for me. I feel that this had a real impact on my health and as a result I became weaker much quicker as I was not using certain muscles.

In my opinion, sometimes, parents although well-meaning, can actually be hindering and / or making things worse.

In 2011 I came to the NMC for an assessment and I now receive regular physiotherapy and hydrotherapy which really help alleviate some of the symptoms of my condition. By 2012 I started using a wheelchair indoors as well.

In 2014, I met a lady called Sue Barker, at a fun day in my local park. Sue runs her own business under the umbrella of a local company called “Forever Living” which specialises in Aloe Vera. I was attracted to her stall and went over for a chat.

After talking to her I decided to try the products. She visited me at home and after taking the products I felt amazing. I used to have to go to bed for 2/3 hours each day. Now I don’t need to and I feel more alert, alive and active. Having benefitted from the products myself, I decided I wanted to take the opportunity to help others too.

So, with the help and support of my new husband, I now have my own Forever business and I have achieved beyond my imagination.

Thanks to Sue, I have turned my life around. I am no longer confined to four walls. My confidence and skills are growing every day and instead of fearing my future, I am looking forward to it.
Just because you have a long term condition it doesn’t mean you can’t do something.