Tag: Hydrocephalus

  • Julius Arnold

    Julius Arnold (1835-1915) was a German pathologist.

    His name is affiliated with Type II Chiari malformation (Arnold–Chiari malformation).

    With a primary interest in pathology and anatomy, Arnold made contributions in a number of areas, including the anatomy associated with gunshot wounds (1870).

    Biography
    Born 19 August 1835 Zurich, Germany
    Son to German anatomist Freidrich Arnold (1803-1890)
    Studied under Rudolf Virchow and Nikolaus Freidrich in Heidelberg
    Later became Professor of Anatomy at Heidelberg
    Died 3 February 1915


    Medical associations
    Arnold–Chiari malformation (1894) – Type II Chiari malformation associated with myelomeningocele
    Friedrich-Erb-Arnold syndrome [aka Uehlinger syndrome; Pachydermoperiostosis or primary hypertropic osteoarthropathy] Characterized by pachydermia (thickening of the facial skin and/or scalp); digital clubbing; and periostosis (swelling of periarticular tissue).


    Key Medical Attributions:
    In 1894 Arnold described his pathological post-mortem findings of an infant with herniation of the cerebellar tonsils and 4th ventricle through the foramen magnum. The infant also had spina bifida. The similarities between this and the findings of Hans Chiari lead to this being named the ‘Arnold-Chiari Malformation‘. Alternatively known as Chiari malformation II.
    The findings Chiari had previously described involved brainstem herniation with associated spina bifida. However, the infant in that case had associated hydrocephalus, which was not the case with Arnold’s findings.

    https://en.wikipedia.org/wiki/Julius_Arnold

    https://litfl.com/julius-arnold/

  • Hans Chiari

    Hans Chiari (1851-1916) was an Austrian pathologist. He is named after and affiliated with the Chiari malformations; Type II Chiari malformation (Arnold–Chiari malformation) and Budd–Chiari syndrome (1899).

    Biography
    Born November 4, 1851 in Vienna, Austria
    Studied medicine in Vienna and worked as an assistant at the Vienna Institute of Pathology under Karl Rokitansky (1804–1878)
    1875 – Graduated medical school from the Unviersity of Vienna
    1878 – Habilitated in pathological anatomy in Vienna
    1882 – Professor extraordinarius of pathology at the German University in Prague
    1883 – Appointed professor ordinarius and superintendent of the pathological-anatomical museum in Prague
    1906 – Commenced as professor ordinarius at the University of Strasbourg
    Died May 6, 1916 in Strasbourg following a throat infection

    Hans Chiari published a case series of three patients with hepatic vein thrombosis, and a literature review of seven additional patients. He named the disease ‘phlebitis obliterans‘, and postulated that the thrombosis was a complication of endo-phlebitis likely from syphilis. Lange postulated an inflammatory process in hepatic vein thrombosis prior, in 1886.

    Chiari published across a wide range of pathology, including malformations of the brainstem and cerebellum, hepatic vein thrombosis, aortooesophageal fistula, choriocarcinoma, carotid artery plaques and thrombosis, autodigestion of the pancreas, and connections between the eustachian and thebesian heart valves.

    Pathology of showed congested and necrotic livers, porto-mesenteric circulation congestion, large volume ascites, and minimal adventitial reaction without perivascular involvement on histology. Chiari provided the first clinical and pathological correlations of this syndrome.

    Chiari malformations – abnormalities of the brain stem and cerebellum identified by Chiari on post-mortems. Type 1 (1891) – peg-like elongation of the cerebellar tonsils into the spinal canal through the foramen magnum; Type 2 aka Arnold Chiari malformation and Type 3 and 4.

    Chiari network – mobile net-like connections between the valve of the coronary sinus and the valve of the inferior vena cava. An anatomical variant, usually of no clinical significance.

    https://litfl.com/hans-chiari/

  • Hydrocephalus Week!

    Memory, processing speed, concentration, planning and organising – these are just some of the things our ‘Hydrocephalus and Learning’ leaflet for children and young people with Hydrocephalus can help with and has tips and ideas to support them at school or learning.

    Whether you’re living with or caring for someone with hydrocephalus, you’ll love our easy to use resource hub with our most popular information on a range of topics Shine members have told us are the most important.

    Visit our Hydrocephalus Resource Hub to view and download useful resources we have added as part of Hydrocephalus Awareness Week.

    https://ow.ly/6wcQ50QM72A

    Hydrocephalus Awareness Week is sponsored by Codman.

    #LivingWithHydrocephalus

  • ‘Horseback Riding in Bermuda’

    This year The WindReach Bermuda and Bermuda Riding for the Disabled, is celebrating 50 years of Therapeutic Riding in Bermuda!

    Therapeutic Riding is recognized world wide for its positive contributions to an individual’s well-being; cognitively, physically and emotionally. In fact, the impact therapeutic riding has on an individual with special needs is profound. Not only does riding improve physical strength, balance and coordination, it goes as far as to increase self-esteem, concentration levels, health and social interactions. Therapeutic riding is available to a large sector of individuals living with special needs and should be encouraged as we look to celebrate all abilities.

    WindReach Bermuda’s Therapeutic Riding Programme is accredited by The Canadian Therapeutic Riding Association (CanTRA) and their Instructors are also CanTRA certified. We strive to provide a high quality programme that promotes challenge, achievement, empowerment and independence for individuals with special needs. Lessons, whether individual or group, follow an individualised lesson structure; including warm up exercises, a progression of skills and games designed to further those skills. Accompanying the participant and instructor in each lesson are trained volunteers ensuring safety at all times. Lessons are designed around the participant’s unique needs to maximize the outcomes and therapeutic benefits.

    WHY HORSES?


    Because they are fun! But more importantly, a well trained therapy horse is rhythmic, symmetrical and organized. Each step the horse takes provides strong sensory and physical input in many dimensions – up and down, side to side, and back and forth. The Instructors balance these movements in specific orders to achieve positive results with the rider’s body mechanics that cannot be duplicated in any other setting.


    WHAT ARE THE BENEFITS TO THE THERAPEUTIC RIDING PROGRAMME:

    The physical benefits include: improved balance, strengthened muscles, improved coordination and motor planning. It also stretches tight/spastic muscles, increases joint range of motion, respiration and circulation, as well as sensory integration.

    Therapeutic riding also improves: social skills, self confidence, increased interest in the outside world and increased risk taking abilities. In addition, it develops skills of patience, emotional control and self discipline; enhances friendships, communication and enjoyment and develops respect and affection for animals.

    The educational benefits include: improved remedial reading and math, sequencing, patterning and motor planning, improved hand/eye coordination, improved visual and spatial perception, increased attention span and concentration, as well as improved verbal skills.

    I remember when I used to go horseback riding at Bermuda Riding for the Disabled, as a wheelchair using, primary school student. During my time there, I got to ride three different horses: Dusty, Squirrel and Sandy. It was a form of physical therapy for me.

    In the picture below, I am riding on a horse named Squirrel in my school P.E uniform. This took place every Wednesday at lunchtime for about an hour. Unfortunately, I stopped when I transitioned to Middle School to focus on my studies.

    Purple Badge for Bravery Award

    One technique that I learned while there was Trotting. There is a difference between Trotting and Galloping. The difference between gallop and trot is that gallop is (intransitive of a horse, etc) to run at a gallop while trot is to walk rapidly. I even won a purple ribbon Bravery award for Trotting during a contest. I learned a lot and made great relationships while there. Congratulations to them for 50 years and best wish for a whole lot more!

    If you are interested in participating in our Therapeutic Riding Programme please contact Samantha Hillier at shillier@windreach.bm or call 238-7433.

    https://www.windreachbermuda.org/programmes/riding/

  • ‘Home Automation for Physically Disabled People in the UK’

    CareFree Smart Homes began from a desire to enhance the lives of people with disabilities. As a disabled-owned company, we recommend all of our products to anyone disabled who is looking to utilise technology to enhance their level of independent living. During an interview with CEO Josh Porritt, this is what he said:

    1. What is a Care Free Smart Home?

    A CareFree Smart Home is one that provides the occupants with useful automation and voice controlled features that make it easier to control their home.

    2. Are Care Free Smart Homes wheelchair accessible? How?

    Products available at CareFree Smart Homes can help wheelchair users by enabling them to do more from their chair without having to move around as much or stretch for switches.

    3. Are Care Free Smart Homes digitally accessible? How?

    CareFree Smart Homes is all about technology. Whether you want to control your home whilst you’re there, or somewhere completely different. We have a website and are available on all major social media platforms plus live chat and WhatsApp.

    4. Do Housing Corporations know about your company?

    We are open to working with housing corporations and welcome them to contact us.

    5. Are Care Free Smart Homes legal?

    All our products and services comply with the law.

    6. When did you start Care Free Smart Homes?

    CareFree Smart Homes was incorporated in July 2022 and began operating in September 2022.

    7. Does a Care Free Smart Home, work without Wifi or Internet connection?
    Sort of, at the moment. The ability to control your smart home without an internet connection is becoming more and more possible every day. There will come a time where every smart home accessory can be controlled independent of an internet connection.

    8. You say that you like solving problems. Which problems arose for you to start building Care Free Smart Homes?

    It’s often difficult for disabled people to navigate properties, whether it’s fully adapted or not. As a disabled person, I understand this problem first hand. Coupled with the fact I’m obsessed with technology, I’m ideally placed to advise on how smart technology can be used in the homes of everyone, including disabled people.

    9. How do you build Care Free Smart Homes?

    Whilst there’s a broad range of smart products available, we focus on providing products and solutions that are ‘plug and play’. We believe that ‘plug and play’ products, if they can’t be installed by the purchaser, are suitable to be installed by family members, friends, carers, handymen, and for certain products, a short visit from an electrician

    10. Do you eventually wish to go global/international?

    At this time we are focused on establishing our name within the United Kingdom and making life easier for as many people as possible through use of technology.

    For more information about his company, you can check out his website at: Home Automation For Disabled Persons | CareFree Smart Homes https://www.carefreesmarthomes.co.uk/

    Seen by Josh Porritt at 14:35

    Enter

    Write to Josh Porritt

  • NORTH AND WEST YORKSHIRE ASBAH COMMUNITY CONFERENCE

    NORTH AND WEST YORKSHIRE ASBAH COMMUNITY CONFERENCE

    After 50 years of service, The North and West Yorkshire ASBAH had their first ever Community Conference. It was held on the 16th of October, at Hollins Hall Hotel, Golf and Country Club in Bradford. This was a day planned especially for people in the Spina Bifida and Hydrocephalus communities to come together and celebrate. There was lots of information on continence care, PIP and DLA form advice, education, and pressure ulcer prevention and cure.

    During the first workshop, I joined the PURSUN Group from Leeds, to do a presentation on Pressure Ulcer Prevention and Cure. It was very good to meet Delia Muir and share my experiences on the subject.

    Heather Chapman was at the ASBAH Charity conference, talking to wheelchair users about nutritional therapy by Wheely Therapy. Nutritional therapy is the application of nutrition science in the promotion of health, peak performance and individual care.

    Nutritional therapy practitioners use a wide range of tools to assess and identify potential nutritional imbalances and understand how these may contribute to an individual’s symptoms and health concerns. This approach allows them to work with individuals to address nutritional balance and help support the body towards maintaining health.

    Nutritional therapy is recognised as a complementary medicine. It is relevant both for individuals looking to enhance their health and wellbeing and for those with chronic conditions wishing to work with or ‘consult’ a nutritional therapist in collaboration with other suitably qualified healthcare professionals.

    I also learned about SEND. This presentation workshop was about guidance on the special educational needs and disability system for children and young people aged 0 to 25, which started on 1 September 2014. The questionnaire that the presenter gave out, was a very good teaching tool.

    Additionally, there were stalls and activities for the children. There were free prizes and charity merchandise on display as well. One of our sponsors, Irwin Mitchell, provided bags with freebies inside too. They also support the SHINE Charity.

    Dr. Kate Wildig was the guest speaker who ended the whole conference. North and West Yorkshire ASBAH has a good support group. Use It!

    https://fb.watch/fgJu3S12UL/

    https://form.jotform.com/katyravenasbah/conference-registration-form

    https://www.linkedin.com/company/north-and-west-yorkshire-asbah/

    https://www.nwyasbah.org/nwyasbah

    https://www.carefreesmarthomes.co.uk/group/disability-diary/discussion/b86d1cfe-90c2-42e7-9229-e3043c3b46cc

    http://www.wheelyhealthy.co.uk

    https://www.gov.uk/government/publications/send-code-of-practice-0-to-25

    https://www.hollister.co.uk/en-gb/products/ostomy-care-products

    https://www.irwinmitchell.com/?ref=google&infinity=ict2~net~gaw~ar~353754706478~kw~irwin%20mitchell~mt~e~cmp~MEC+Brand+HV+Irwin+Mitchell+Exact~ag~Brand+-+HV+Core&&ds_lpt_start&ds_lpt_end&gclid=CjwKCAjw-rOaBhA9EiwAUkLV4hbptkb2WjS1oL5NWyP1zEv8oaEMV66IqQXjPXb8DbSqSlgIv38NDxoCl8IQAvD_BwE&gclsrc=aw.ds

  • Let’s Work Together to Stop The Pressure!!!



    MY PRESSURE ULCER JOURNEY

    I never knew what pressure ulcers were until I got one for almost all pressure points. I am currently facing possible amputation. If this happens what am I gonna do?

    24 hour support will be needed. I don’t like the idea of amputation. The problem is, I’ve been having pressure ulcers, foot x-rays and MRIs/CTIs. I’ve had a series of meetings about my right foot. I’ve got antibiotics to take. Blood sugars, protein levels, blood circulation, feet pulses and kidneys all contribute to the feet. I also got to see photos from MRI scans. I got permission to take photos of them. The heel bone is infected. I know what it’s like to be cured of pressure ulcers, but they keep returning, especially on my feet. What’s going on?

    As a result, I have chosen to join the fight against pressure ulcers.

    During my first year of college, the pressure ulcers started. When this happened, I got a social worker, carers, District Nurses from the Chelsea and Westminster Hospital in London while studying. I also have a Tissue Viability Nurse and a Podiatrist. Before the pandemic, I visited the doctor’s office for appointments. Now I get home visits.

    One day, the wound on my right foot seemed smelly to the nurse as if it’s infected so I was on antibiotics for 7 days. Sensation and movement is limited from the ankles down as a result of lower spine damage due to Spina Bifida. Pressure ulcers can also be caused by bed mattresses or wheelchairs. Bermuda has a lack of resources and a lack of information. There are no Spina Bifida clinics/specialists in Bermuda. Lived with parents. Swimming in the salt ocean in Bermuda beaches has contributed to the healing process. Before England and College, I had no pressure ulcers.

    Pressure wounds usually take 3 months to heal. My wheelchair has a ROHO Cushion with air pockets. Now my footrests have air pockets. It’s ultimately an airbag under my feet. https://www.permobil.com/en-us/products?category=SeatAndPositioning

    Podiatry and District Nurses tend to clash from time to time. District Nurses visit three times a week while Podiatry only visited once. District Nurses know how to dress my foot correctly. Which one is more important?

    Pressure Sores (also called bedsores or decubitus ulcers)
    Pressure sores, also called bedsores or decubitus ulcers, are areas of broken skin and underlying tissues that have been damaged by pressure. Pressure (such as sitting in the same position for too long) restricts blood being supplied to the area, so the tissues become deprived of oxygen and toxins build up, which causes the skin and tissue cells to die. People with Spina Bifida may not feel this damage beginning because of reduced feeling in parts of their body.

    PURSUN GROUP IN LEEDS
    Prevention is better than cure! You must have tough skin. Pay attention to pressure points. Additionally, make sure you have good quality, well-fitting shoes that do not cause red marks on your feet. You may want to ask your GP to refer you to an orthotics centre to have shoes made especially for you. The styles are much better than they used to be!

    Make sure you have a well-fitting wheelchair with a pressure-relieving/ reducing cushion. Pressure mapping in the wheelchair cushion. Always use your footplates to support your feet and stop your legs from ‘hanging down’, which is bad for the circulation. Ergonomic Assessment required.

    Feet must be elevated above the head, especially in bed, for good circulation. Check your wheelchair does not leave red marks on your legs or body. When you see a reddened area of skin, tell your GP straightaway. Don’t wait to see if it improves on its own. If left untreated they can take a lot longer to heal. If you do have a skin breakdown, make sure your health professionals look at the reasons why it happened, and don’t just apply dressings. Change your sitting position frequently throughout the day and have a chair at home to sit in other than your wheelchair. Try to spend part of each day off your bottom. Check your skin regularly for pressure sores using a mirror to see areas of your body you cannot see otherwise. Pay particular attention to areas of skin where you have little or no feeling.

    Massage is now advised against as recent evidence suggests that it is not beneficial for pressure areas and may be harmful.

    https://www.nursingtimes.net/clinical-archive/tissue-viability/does-massage-help-to-prevent-pressure-ulcers-15-08-2011/https://www.nursingtimes.net/clinical-archive/tissue-viability/does-massage-help-to-prevent-pressure-ulcers-15-08-2011/


    Hygiene: Access to Showering facilities instead of bathing facilities in England. District nurses clean and dress wound 3x a week maximum, in addition to personal daily showering. Skin care included Aqueous cream. No scented creams are allowed on broken skin. I shower daily but due to pressure ulcers and a PICO, I also use a LIMBO to cover my damaged foot to keep it clean and dry.

    Why does immobility cause pressure ulcers?
    Poor mobility/immobility: Patients who are unable to independently change position are at increased risk of developing a pressure ulcer, due to pressure exerted over bony body parts which results in reduced blood flow to the tissues and subsequent hypoxia.

    CURE

    I also use a Profile bed, I prefer loose clothing vs tight clothing like dresses or sweat suits. Compression socks/stockings/orthopaedic shoes/socks because sensation and movement is limited from my ankles down.

    Incontinence can also contribute to pressure ulcers. Pressure ulcers must be kept clean and dry.
    Previously during the first four months of my first year in college, I skipped meals for the sake of my studies. I was also given a Dietician who put me on a high protein diet. My meal plan looks something like this:


    Breakfast
    Mid-morning snack
    Lunch
    Mid-afternoon snack
    Dinner
    Dessert

    Why does malnutrition cause pressure ulcers?

    Unplanned weight loss is a major risk factor for malnutrition and pressure ulcer development. Suboptimal nutrition interferes with the function of the immune system, collagen synthesis, and tensile strength.

    Pressure Ulcer Prevention at Home

    • Treat your skin gently to help prevent pressure ulcers.
    • When washing, use a soft sponge or cloth.
    • Use moisturizing cream and skin protectants on your skin every day.
    • Clean and dry areas underneath your breasts and in your groin.
    • DO NOT use talc powder or strong soaps.
    • Try not to take a bath or shower every day

    https://tvs.org.uk/stop-pressure/

    https://www.shinecharity.org.uk/self-care/skin-and-tissue#Sores

    https://nhs.stopthepressure.co.uk/patients.html

    https://medicinehealth.leeds.ac.uk/leeds-institute-clinical-trials-research

    Every day has to be a STOP THE PRESSURE day when you are a person living with skin vulnerability or reduced mobility.

    LET’S WORK TOGETHER TO STOP THE PRESSURE!!!

    STOP THE PRESSURE, START THE RELIEF!!!!

    STAY TUNED FOR THE REST OF THIS SERIES ON PRESSURE ULCERS!

  • Dietary Impact of Food on Pressure Ulcers

    Pressure ulcers (also known as pressure sores) occur when the skin and surrounding tissue is damaged by medical devices or the weight of the body pressing down. This restricts blood flow and the delivery of oxygen and nutrients to the area. They often develop where bones are close to the skin such as on the lower back/spine, hips, heels and elbows. Having a poor nutrient and fluid intake can increase the risk of pressure ulcers.

    The risk increases in those who are underweight or overweight. Maintaining a healthy weight and eating a balanced diet can reduce the risk of developing pressure ulcers. You should try to adopt a meal plan like this:

    Breakfast
    Mid-morning snack
    Lunch
    Mid-afternoon snack
    Dinner
    dessert

    This is because being overweight can reduce mobility and increase the weight bearing load through pressure areas such as the bottom.
    Being underweight can mean there is less natural padding on bony areas such as the bottom and hips.
    The skin needs a good supply of fluid and nutrients to maintain its circulation and keep it supple.


    Nutrition and pressure damage
    Once a pressure ulcer has developed, nutrition plays a vital role in the healing process. This is because the body needs protein, energy (calories), vitamins and minerals (such as vitamin C, iron and zinc), and plenty of fluids to support the wound healing process.

    Protein
    Your body may need more protein if you have a pressure ulcer. Foods that are high in protein include meat, fish, eggs, dairy products, nuts, beans and pulses. Try to have at least one of these foods at each meal. Aim to have one pint of milk per day or a variety of milk and dairy foods such as milk puddings, cheese or yoghurts.

    If you are overweight choose low fat versions. They contain the same amount of protein as full fat versions but are lower in calories. There are also some yoghurts, ice cream and milks available that contain higher amounts of protein.

    If you use milk substitutes, soya milk contains a similar amount of protein as cow’s milk. Oat, rice, hemp and nut based milks contain significantly less protein.

    Iron
    Iron is important for the healing process by helping to maintain adequate blood haemoglobin levels. Foods that are good sources of iron include meat, fish and eggs. Iron is also found in other food such as beans, pulses, green vegetables and dried fruit, but these are less easily absorbed.

    Vitamin C
    Vitamin C helps with the absorption of iron from your food and also directly with the healing process. Vitamin C is found in a wide variety of fruit and vegetables. It is not stored in the body so a daily supply is needed. Vitamin C is destroyed during the cooking process, so it is important not to overcook your vegetables, or if possible, steam them. Drinking a small glass of fruit juice (150ml) with your meal is a good way to improve your intake. If your vitamin C intake remains low you may need to take a supplement.

    Zinc
    Zinc is important for the formation of new skin tissue and to help pressure ulcers to heal. Good sources are lean red meat, shell fish, milk, cheese, bread, lentils, beans and cereal products such as wheatgerm.

    Vitamin and mineral supplements
    If you cannot eat enough foods containing key vitamins and minerals then you may need to take a supplement. If you are unable to manage a varied diet, or have a poor appetite, an “A to Z” type vitamin and mineral supplement may be necessary and these are available from many high street chemists. If you are managing to eat a full and varied diet then there is no benefit in taking high levels of vitamins and mineral supplements – in fact, this can be harmful.

    Fluid
    Dehydrated skin can become dry and fragile. It is important that your skin is kept moist from the inside. You should aim for 1.5 to two litres per day (six to ten mugs). This could include any liquid (tea, coffee, milk, water, juice) but not alcohol. If you are overweight avoid drinks that contain sugar, choosing sugar free alternatives or using low-calorie sweeteners in hot drinks.

    Body weight
    If you are overweight, losing weight could help to reduce the risk of pressure ulcers and protect a newly healed pressure ulcer. However, if you restrict your intake too much whilst a pressure ulcer is healing it could delay the healing process.

    It is important that you maintain a balance to your diet so that your body continues to get all the nutrients it needs. Simple changes that you could make to your diet if you are overweight are:

    • Cutting out sugar from hot drinks or using a sweetener.
    • Using low fat cooking methods such as grilling, baking, microwaving or steaming rather than frying.
    • Opting for snacks that are lower in energy and fat such as low fat yoghurts and fruit.
    • Remember to have meals that are balanced. Try not to miss meals.
    • Aim to lose an average of no more than 0.5 to 1kg a week.


    If you are underweight, pressure ulcers need a lot of nutrients to help them heal. If you are underweight you may not have enough nutrient stores in your body so you will need extra nutrition from your diet. Without nutrients the healing process may take longer. Some changes that could help to increase your intake are:

    Ensure that you have regular meals. If you find it difficult to prepare and cook meals then there are a wide variety of tinned, chilled or frozen ‘ready meals’ available. Frozen or tinned vegetables can also be useful.
    Try to have three small meals and two to three nourishing snacks throughout the day (such as yoghurts, cheese, nuts and biscuits).
    If your appetite is poor, try to also include two nourishing drinks each day such as: milk, malted milk drinks, fruit juice or powdered supplement drinks which are available from your local chemist or supermarket.
    Oral Nutritional Supplements (sip feeds)
    If your food intake remains low, it may not be enough to help heal the pressure ulcer. If this is the case, it may be necessary for you to have some prescribed oral nutritional supplements. These types of drinks provide a rich source of energy, protein and other nutrients. A dietitian may be available to discuss with you the most appropriate one and how many you will need. You should not take additional vitamins and mineral supplements if you are taking three or more oral nutritional supplements per day.

    If you have diabetes, poorly controlled diabetes can delay healing. Diet and medication may need to be adjusted to achieve good diabetic control. Speak to your GP, nurse or dietitian if you require help with this.

    Eating a balanced diet and having a healthy body weight will help to reduce the risk of developing a pressure ulcer. If you have a pressure ulcer, eating and drinking well will help it to heal. If you are overweight then it would be beneficial to try to lose weight gradually. If you are underweight then weight gain will help improve the padding over the bones. This can be best achieved by eating small and frequent meals and snacks.

    For more information, you can follow: https://www.bda.uk.com/resource/pressure-ulcers-pressure-sores-diet.html.

  • Interview with Access Adviser

    Q: Tell us a little bit about yourself.
    A: My name is Daniella Jade Lowe. I am a university graduate with a BA degree focused on History and Politics from the University of Bradford, England. Journalism and Politics are my passion. I am an emerging Journalist, Politician and Disability Advocate. My motive behind doing this was to be an advocate for people with disabilities. I am also marketing myself as an Access Consultant.

    Q: What is your experience of life as a disabled person?
    A: I have advocated for Wheelchair Accessibility in Bermuda, by writing various articles for numerous publications on the subject. In fact, one of the reasons why I pursued further education and started my career in England was due to Wheelchair Accessibility. During Middle School and High School, I used a Garaventa StairTrac for navigating the school for classes. I have even represented Bermuda at the London 2012 Paralympic Games as a reporter for Bermuda’s Paralympian Jessica Lewis. During the games I also assessed the level of Wheelchair Accessibility at the event.

    Q: How would you describe your disability?
    A: I was diagnosed with Spina Bifida and Hydrocephalus at birth. This condition is neurological. It comes with mobility issues and learning difficulties. As a result, I use a wheelchair for mobility.

    Q: What is accessibility like where you live?
    A
    : Accessibility is terrible in Bermuda. Accessibility is much better in England.

    Q: Where is your favourite place for accessibility & why?
    A: Bradford and Ilkley are great for Wheelchair Access because there are plenty of ramps, lifts, and flat surfaces. Leeds has Disability Confident companies too.

    Q: What is one accessibility improvement that you would like to see?
    A:
    Travelling around London can be improved especially when using the Tube or the Underground. Gatwick Airport is better for Wheelchair Accessibility than Heathrow Airport is.

    For more information about Access Adviser, please visit https://accessadvisr.net.

  • WHAT IS AN ASBAH AMBASSADOR?

    WHAT IS AN ASBAH AMBASSADOR?

    By: Daniella Jade Lowe

    The Association for Spina Bifida and Hydrocephalus is a charity that was founded in 1967. ASBAH is the local association and does peer support, activities and events to bring the Spina Bifida and Hydrocephalus community together.

    Katy Raven is the Project Manager for ASBAH. This charity is comprised of volunteers, parents/carers, children, adults and committee members.

    This organisation covers North and West Yorkshire which includes Cheshire, East Riding of Yorkshire, Greater Manchester, Halton-Runcorn, Halton-Widnes, Kingston Upon Hull, Lancashire, Merseyside, Middlesbrough, North East Lincolnshire, North Lincolnshire, North Staffordshire, North Yorkshire, Redcar/Cleveland, Shropshire, South Yorkshire, Wakefield, Warrington, West Yorkshire, Wigan and Wirral.

    ‘Supporting you to flourish and thrive’ is the slogan for the ASBAH foundation. By supporting, informing, and campaigning, North & West Yorkshire ASBAH is continuing to help promote individual choice, control, and quality of life for all the people who use their services.

    It is very important for people who are born with a developmental disability to have a good support network through peer support and befriending, especially if they are excluded from mainstream education and employment and always have to push for inclusion. It helps them to thrive and flourish.

    For the past 13 years, I have been a recipient of this charity’s services. They’ve helped me with medical support, educational advice, Spina Bifida clinics, job-searching assistance, interviews, companionship, advocacy, applying for financial support and wheelchair services. They also played a role in helping me get my first electric wheelchair during my first year of college.

    It all started back in the summer of 2009, when I originally moved to Bradford to start college. Upon arriving at the student accommodation, I met Miss Joan Pheasant, a chairman from the board of the ASBAH foundation. I found out about this charity through online research while still living in Bermuda. My case was slightly unusual because, I think I am the only international ASBAH member.

    For the sake of awareness, this organisation has decided to start an initiative called ASBAH Ambassadors and I’ve chosen to join in to advocate for others with Spina Bifida and Hydrocephalus.

    For example, one way that they do this is by celebrating Spina Bifida Week from October 25th to the 29th annually. During this week, they have campaigns and forums to educate people on the subject.

    In my opinion, being an ASBAH Ambassador is about disability representation, not just sharing information and advocating. It’s also about raising awareness. For me, being an ASBAH Ambassador is also about networking. This is why we have a befriending initiative too.

    I strongly feel that this charity has helped me to mature and properly manage my disability related issues. I definitely found it difficult to prioritise my medical affairs, finances, social life and education, especially during my first year of college.

    When I first started college, I remember participating in the Go Folic Campaign with ASBAH for Spina Bifida Week (https://www.totalhealth.co.uk/blog/importance-folate-prior-conception-go-folic-you-frolic). These campaigns and forums taught me how to improve the way I take care of myself, especially in diet and personal hygiene. ASBAH has definitely helped me to flourish and thrive in my health, education, social life and finances.

    Joan Pheasant has even helped me with transportation to and from appointments and legal advice (https://www.keighleynews.co.uk/news/12965951.keighley-group-takes-taxi-overcharging-campaign-district-wide/.)

    I’ve also been to various annual social events like afternoon tea at the Clevedon House in Ilkley and Christmas dinners in Leeds, as a member of the ASBAH Association. One Sunday, we even went to lunch at the Cow and Calf in Ilkley.

    I appreciate this and feel it was beneficial to me because I know what it is like to live in a country that does not provide these services. I’ve learned a lot from this charity, like how to approach interviews and applying for benefits. I also feel that my social skills have improved. This charity is definitely needed and a great asset to the community especially for the expectant families and parents with Spina Bifida and Hydrocephalus. When I grew up I didn’t have access to these services. I went to private nursery and preschool because not everyone was willing to take on a child with a disability.

    For more information, you can check out their Facebook page: https://www.facebook.com/ASBAHNWY.

    You can also log onto their website: https://www.nwyasbah.org/?fbclid=IwAR3GIzZsOSyRXiRwD7l-qiVaDIle0ezgXHk7puKhBNDnh_PEPTT6cuVuBP4.