Frequently Asked Questions

Muscular dystrophy (MD) refers to a group of more than 30 genetic conditions that cause progressive weakness and degeneration of skeletal muscles used during voluntary movement. These conditions vary in age of onset, severity, and pattern of affected muscles. All forms of muscular dystrophy grow worse as muscles progressively degenerate and weaken.

Some types of muscular dystrophy also affect the:

- - Heart
  - Gastrointestinal system
  - Endocrine glands
  - Spine
  - Eyes
  - Brain
  - Other organs

Respiratory and cardiac diseases may occur, and some people may develop a swallowing disorder. MD is not contagious and cannot be brought on by injury or activity.

What are the symptoms?

The primary indicator of muscular dystrophy is the progressive weakening and atrophy (wasting) of muscles. The specific muscles that are affected, and the severity of the resultant symptoms, vary widely depending on the type of disease. Many forms of muscular dystrophy cause weakness in muscles needed for movement, which can cause fatigue and impair mobility.

How is muscular dystrophy diagnosed?

Your doctor is likely to start with a medical history and physical examination. After that, your doctor might recommend:

- Enzyme tests

Damaged muscles release enzymes, such as creatine kinase (CK), into your blood. In a person who hasn’t had a traumatic injury, high blood levels of CK suggest a neuromuscular condition.

- Genetic testing

Blood samples can be examined for mutations in some of the genes that cause types of muscular dystrophy.

- Muscle biopsy

A small piece of muscle can be removed through an incision or with a hollow needle. Analysis of the tissue sample can distinguish muscular dystrophies from other muscle conditions.

- Heart-monitoring tests (electrocardiography and echocardiogram)

These tests are used to check heart function, especially in people diagnosed with myotonic muscular dystrophy.

- Lung-monitoring tests

These tests are used to check lung function.

- Electromyography

An electrode needle is inserted into the muscle to be tested. Electrical activity is measured as you relax and as you gently tighten the muscle. Changes in the pattern of electrical activity can confirm a neuromuscular condition.

Family

Talking to your child

When should I tell my child?

The first step is to tell children the diagnosis as soon as possible; if some time has already passed since the diagnosis by the time, you read this, then consider telling your child now.

Why should I tell my child about their diagnosis?

Because children will wonder why they are not being told what’s going on. Toddlers and very young children can sense when their parents and other family members are upset or when something is wrong. As they grow older, children will be aware of changes in their physical condition and may make comparisons between what they can do and what their peers or siblings can do.

If children are not given an explanation, children often worry about these changes and develop their own explanations for why people are upset.

How much information should I give them?

Children like to learn from their parents. Generally, children do best if the adults having these conversations with them are people they have a relationship with. For this reason, your child’s medical team will typically look to you to have these conversations with your child.

Any information shared with your child should be appropriate to their age and experience. Children’s understanding of their condition develops as a result of maturity, experience and education. So when thinking about talking to your child, it is useful to remember you do not need to tell them everything in one go. In fact, doing so is likely to be overwhelming.

It might be helpful to start with these pointers

- What do they already know?

Start the conversation by asking children what they already know about their condition. Ask questions to check their level of understanding.

- Do they really understand what they have been told?

Look out for misunderstandings. Sometimes it can be hard to judge how much your child understands, so ask them to explain to you what you have just told them. This is a really useful technique to double-check their understanding.

- It’s ok to talk about it to me.

Tell them explicitly that they can ask you questions about their condition whenever they want to. Do not presume that they know this.

- Be truthful.

Answer truthfully any questions they have. If you do not know the answer, then say so. That’s ok too. Often children just want to know that you are there and happy to listen.

- Give the condition its correct name.

Use the correct name for the condition your child has. Even for very young children, it is helpful to have a name for something. They will become familiar with the condition over time and, bit by bit, understand more about what it means.

- It’s not their fault.

When you first start to talk with your child about their condition, make sure you explain that it is not the result of something anyone did. It’s also not an illness that can be spread to other people. Young children are prone to misunderstandings; under the age of five or six, they generally think in very concrete terms. This means they can end up thinking things are the result of their being naughty or bad in some way.

- Keep it in the present.

When thinking about discussing your child’s muscle wasting condition with them, it can be helpful to remember this is just the beginning of a conversation that you will repeat and expand on over time. Keep the focus on the day-to-day information they need to know now, particularly when talking with younger children. Children do not need to know everything at once. They will quickly feel overwhelmed if you give them too much information.

- Increase the amount of information with age.

As your child reaches new stages in development and new milestones, their information needs will increase. These include milestones, such as entering secondary school, as well as those associated with the progression of their neuromuscular condition. If things have changed with their condition or they have upcoming hospital appointments, use these times to check in with them about how they are doing. Check whether or not they have any questions.

- Questions for the doctor – giving your child a voice.

As your child gets older, ask if they have any questions for the doctors before and after they attend appointments.

- Prepare them well for transition to adult services.

As your child approaches transition to adult services (which usually occurs between the ages of 16 and 18), it is likely they will be become more actively involved in their treatment and treatment decisions. It is really important that they are prepared for this and know enough about their condition and its prognosis to do so. In adult services, the young person may be asked specific questions about their wishes with regard to treatment in the future. It may be distressing for them if they are not already fully informed about their condition and prognosis.

My child doesn’t want to do stretches?

Encourage your child and explain how important stretching exercises are they are perhaps the most important exercises for all ages. Anybody who sits in the same position all the time will get stiff and uncomfortable. If you have a muscle condition, the stiffness can become permanent if the muscles and joints are not moved and stretched. Physios and doctors call this stiffness a ‘contracture’. Knees, for example, normally bend right back so that the calf and the back of the thigh meet and they can also straighten up.

Parents

I am a carer for my child. Am I entitled to benefits?

As a parent or carer of a child with a disability, you may be able to claim benefits or financial support. This is to help you with the cost of their care.

Benefits and entitlements you may be eligible for include:

- - Social Welfare benefits
  - Tax credits
  - Housing grants to adapt your home
  - Transport and mobility

Your eligibility may depend on your circumstances, such as:

- - the needs of the person you care for
  - your income
  - where you live.

Here you can find out more about the benefits you are entitled to. INSERT link address.

What is carer’s allowance?

Carer’s Allowance is a weekly social welfare payment to people who are caring for a person who needs support because of their age, disability or illness (including mental illness).

Carer’s allowance

How do I deal with my feelings?

There is no right or wrong way to feel. You will probably feel differently at different times. One minute (or day), you may feel able to cope and then the next day you may feel much more fragile. Some parents say they feel as if they are on a giant roller coaster, and then the good days gradually start to outnumber the bad ones.

It is never easy coping with the unfamiliar. Most parents have a vision for their child and it can be very challenging when this vision is changed by something beyond their control.

Some people find that talking to a counsellor can help. You may want to speak to someone about a new diagnosis, about your feelings about being a parent or carer of a person with muscular dystrophy or anything else that might be causing you difficulty or emotional distress. MDI’s free Counselling Service is here for you when you need emotional support. You can find out more by contacting us at admin@mdi.ie.

How do we cope with each other’s feelings?

If you have a partner, you may find that you and your partner cope with the situation differently.

Sometimes one partner wants to talk while the other doesn’t. What works for some couples is to negotiate some agreed ‘talking time’ so that each partner’s needs are at least partly met.

If one partner is out at work, the other may take on more of the responsibilities relating to the home and children, including attending clinics. Feeding back information from clinic appointments can be difficult; one partner may not have asked the same questions as the other would have. If you cannot attend appointments together, you may find it helpful to compile a list of questions together in advance.

Because everyone deals with situations differently, it may be helpful to get support from a trusted friend or from health professionals.

What physical changes can we expect to see in our child?

Any physical changes in your child are likely to be subtle rather than sudden or dramatic. In very young children, as they go through normal development, you may initially see positive progress.

However, if your child is walking, it is common for him/ her to tire more quickly when walking longer distances, to complain of pain in legs after exercise, to struggle with stairs or to fall frequently. A child may struggle more at the end of the day, particularly if they have been doing physical activities.

Sometimes, weakening of the arms or hands may occur. Writing for long periods, or taking clothing off or putting it on over the head may become more difficult.

If your child is not able to walk at all, changes may take place in their posture or joint position, owing to weakness in some muscle groups.

While it is good to encourage your child to be as active as possible, your child needs to know you understand that some activities are not easy. It is helpful to balance periods of activity with periods of quieter play to avoid exhaustion.

Will our child be in pain as a result of having a muscle-wasting condition?

Most neuromuscular conditions themselves do not cause pain; however some children may be troubled by muscle cramps or joint pains. Advice and regular monitoring by a physiotherapist will be beneficial for most children.

Physiotherapists are likely to provide a programme of stretches and exercises to maintain a good range of movement in the joints, which will reduce discomfort. Gentle massage and warmth can help relieve cramps.

Can I get respite care?

Information about respite care.

Is counselling available for children with muscular dystrophy and siblings?

Your child may benefit from play therapy or other forms of therapy. Play therapy is a therapeutic method that explores a child’s natural means of expression to help them cope in their world. We offer free play therapy to promote self-confidence, imagination, creativity, concentration, communication, problem-solving skills, self-esteem and most importantly happiness in children. This service is available to children with muscular dystrophy/neuromuscular conditions and their siblings. You can find out more by contacting us at admin@mdi.ie.

I am a carer but could use support?

MDI – Our Family Support Workers offer practical and emotional support on a wide range of issues to carers of adults and children with muscular dystrophy / neuromuscular conditions. You can find out more by contacting us at admin@mdi.ie.

Family Carers Ireland -Caring for a loved one can be rewarding, but it can also be difficult, frightening and isolating. It shouldn’t be. Family Carers Ireland want carers to know they have the support they need to care safely, to make it less of a battle and to know they are not alone. You can get carers’ support here.

The HSE recognises the valuable contribution of carers who care for family members, relatives and friends. – Carers information

Siblings

Siblings are asking why the child with muscular dystrophy is getting extra time from the parents/care givers.

Explain that their sibling may need additional help to do things and needs to attend appointments. Encourage the sibling to help with task their sibling needs help with.

Make time for you and the sibling to do activities together so they feel they are getting one-on-one time as well.

How do I tell siblings about muscular dystrophy?

Consider the impact on siblings. It is best to inform them shortly after you find out the diagnosis and continue to include them in discussions. Siblings are likely to have questions (and often worries) about their brother or sister too. It can be difficult to judge how much to tell siblings, particularly if there is a large age gap. Generally, it is important to ensure the siblings don’t know more about the condition than the child living with it. It is a big responsibility to expect a child to hold on to this sort of information.

How can I support siblings?

Offer them the opportunity to meet with others outside of the family (such as a nurse or doctor on the medical team) to ask questions; they can ask questions of these people without worrying about upsetting family members. If they

do not have a ready source for information, they may look elsewhere in less appropriate places. Make sure that you address the needs of siblings for their own personal development. MDI’s Youth Service Programme offers support to siblings of children and young people with muscular dystrophy. You can find out more by contacting us at admin@mdi.ie.

Other

Grandchild/niece or nephew was diagnosed with muscular dystrophy.

I will be caring for my family member with muscular dystrophy for the day/night?

Ask is there any specific care the person requires.

Extra activities for children

What extra activities are there for children with a disability?

- Sports Inclusion Disability Officer (SIDO) aim to increase the participation of people with disabilities in sport, fitness and physical activity throughout the country. This is achieved through working in partnership with statutory agencies, sports clubs, community groups, facility providers, schools, disability service providers and people with disabilities. You can find contact details for the Local Sports Partnership in your area as they are the point of contact for any queries relating to SIDOs or the Social Inclusion Disability Programme
- Schools Inclusion

Dún Laoghaire-Rathdown Sports Partnership offers local Primary and Secondary school teachers and SNAs further training in the inclusion of a pupil with a disability into the PE class.

- CARA Disability Awarenes Workshop (2 hours)
- CARA Inclusive PE Workshop
- Inclusive Clubs/Disability Awareness Workshops
- Dún Laoghaire-Rathdown Sports Partnership offers workshops around the inclusion of people with disabilities into sport. We aim to support the work of coaches and tutors in the application of their coaching knowledge and skills to create an environment that encourages people with disabilities to participate in sport and physical activity.
- CARA Disability Inclsuion Training (6 hours)
- CARA Autism in Sport Workshop (3 hours)

For more information on any of the above mentioned workshops contact Brian O’Donnell, Sports Inclusion Disability Officer, Dun Laoghaire Rathdown Sports Partnership on 01 271 9506 or email bodonnell@dlrcoco.ie

DLR Sport Partnerships – Disability Inclusion Workshops (dlrsportspartnership.ie)

- Irish Wheelchair Association – Sport

IWA Sport’s mission is to develop and promote sport, physical and recreational opportunities for people with a physical disability to reach their full potential. Their vision is for everyone with a physical disability to enjoy sport, physical and recreational activities on a fully inclusive basis in any environment. They have sports clubs and activities in all parts of the country and welcome new members. You can find out more here.

- Riding for the Disabled Association Ireland- RDA Ireland provides the opportunity for individuals, with physical or intellectual disabilities, to horse ride or carriage drive and this in turn provides therapy, fitness, development of skills, socialisation, achievement and most importantly fun. More information about the organisation here.

Cathy Byrne

National Coordinator

rdaicoordinator@gmail.com

Mary Walsh

Designated Liaison Person and

National Welfare Officer

rdaiwelfareofficer@gmail.com

- Association of Irish Powerchair Football – This sport is very popular among our members of all ages.

Association of Irish Powerchair Football

+353874117911

info@aipf.ie

Exercise

Should I make my child do exercise?

Keep your child as active as possible and try to make the activities fun. There is no need for anything excessive; normal play is fine.

If appropriate, encourage walking. Your child may tire more quickly than their friends, so do make allowances for this. Activities such as walking up hills, and/or climbing stairs, may be particularly difficult. If your child can manage them, swimming, cycling and horse riding are excellent physical activities.

Should I do exercise with muscular dystrophy?

Yes, it would be good to incorporate exercise into your day-to-day life. It is important with muscular dystrophy you do regular exercise or movement to maintain the strength you have and slow down the weakening process. You can do things like strength training, cardio, stretches or household chores.

Disclaimer: Please check with your doctor before starting exercise. Please note that MDI shares information about neuromuscular conditions. We do not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

Can I do exercise to help my hand grip?

The following exercise equipment may be of interest to you:

Amazon – Workout set 5-pack: adjustable grip strength trainer(10-60KG), grip ball, ring grip exerciser, finger exerciser and finger stretcher

Amazon – Therapy putty

Amazon – Hand grip strengthener.

Amazon – Gel hand balls, hand therapy squeeze exercise stress balls

Amazon – Finger strengtheners and hand grip ring.

Can I do exercise to help my balance?

Balance exercises

Amazon – Wobble cushion

What type of exercise should I do and how often?

Exercise caution when selecting the type of strengthening exercise for some muscle-wasting conditions. If you haven’t done any regular activity or exercise for a while, start slowly and gradually build up.

Stretches – Try to do this as part of your daily routine or at least two/three times a week.

For example, stretches (lying, seated or standing), Pilates or yoga. Static or passive stretch.

You can include stretching exercises in your activity/exercise programme. It is easier and safer to do your stretches when your muscles and joints are warm. Good times to do stretches would be once you have been active or after a bath or shower.

It is important to have good muscle length and range of movement for day-to-day activities. For example, having enough range in your shoulder joint will help for washing and dressing activities.

A number of very rare neuromuscular conditions involve tightness/contractures of the spine or other joints. In this case, the goal of these activities would be to keep the flexibility you have, rather than gain more.

Please take care that you do not over-stretch weak muscles or joints that are already very mobile.

Stretching sensation but no pain.* 30- to 40- second holds. Repeat two to four times Do not ‘bounce’. If you have impaired or absent feeling or no appreciation of pain.

Strength Training – Try to do this as part of your daily routine or at least two/three times a week.

Example, using exercise bands, small weights or Tai Chi/Pilates yoga or mat work style exercises. Individual programme: seek advice about which muscles to strengthen.

Generally, strengthening activities/exercises involve the major muscle groups.

It is important to think about strengthening the muscles of your arms and legs, stomach and back (‘core’) muscles.

Improved core strength can help improve your posture and balance, which can reduce the risk of falling and can help with day-to-day activities, such as wheelchair transfers.

At least twice a week. Stop before fatigue. One set of eight to twelve repetitions for each muscle group identified. Gradually increase to three sets as you are able. Low/moderate weights; increase number of repetitions rather than weight.

When you start a new strength exercise you might expect to be a little bit achy, but any muscle soreness should have gone after 48 hours.

Aerobic – Try to make being active part of your daily routine or try to be active in these ways at least five times a week.

Examples of aerobic exercise include walking, swimming, using an exercise bike, propelling your wheelchair, doing housework and gardening. Any activity that uses large muscle groups and that can be maintained continuously and rhythmically for a period of time.

Aerobic activity/exercise improves the function of your heart, circulation and lungs. By improving your general fitness, this type of activity is also good for your overall health and may help prevent chronic disease.

You should be comfortably out of breath but still able to talk and aim for 30 minutes intermittent bouts aiming for at least 10 minutes. Start with what you can and build on it.

Make sure to warm up.

**In very rare circumstances, people with muscle-wasting conditions can experience changes in the colour of their urine after exercise (in other words, urine that appears the colour of black tea or cola).

Attend A&E if you notice such a change, as this could be a condition called myoglobinuria.**

** Disclaimer: Please check with your doctor before starting exercise.**

Transport

Disabled parking permit (blue badge)

Information can be found relating to the parking permit here.

How do I apply for a blue badge for parking?

First time applicant

In order to apply for a first-time parking permit, the applicant must submit a completed application under one of the following three eligibility options as outlined in How to qualify for a permit:

Section A: Please choose the option below which best describes the eligibility criteria of the applicant for a disabled parking Permit.

A) Applicant requires to have their medical practitioner or consultant certify their medical and mobility eligibility.

B) Applicant is a primary medical certificate holder and will automatically qualify for a permit.

C) Applicant meets blind certification criteria.

Please note: A primary medical certificate is not the same as a medical card.

Apply here

How do I renew my blue badge for parking?

Please apply here to renew your blue badge.

Can I learn to drive?

Yes, the Irish Wheelchair Association has a motoring school for people with disabilities.

The Irish Wheelchair Association cater for a wide range of conditions and disabilities through their fleet of adapted cars and team of experienced driving instructors. They provide training for people who wish to learn to drive or who are returning to driving.

They operate 10 driving schools nationwide located in:

- - Clane
  - Carrick on Shannon
  - Clontarf
  - Galway
  - Kilkenny
  - Letterkenny
  - Limerick
  - Mullingar
  - Navan

All of their driving school vehicles are automatic and fitted with a variety of adaptations.

Find out more here.

Can I get funding for a car?

VRT and VAT Relief Scheme for Disabled Drivers

The VRT7 scheme provides a range of tax reliefs in connection with the purchase and use of motor vehicles. Motability Ireland are the experts when it comes to the VRT 7 scheme and what you are entitled to. Relief in respect of Vehicle Registration Tax (VRT) and Value Added Tax (VAT) may be obtained on the purchase of a vehicle, with a maximum of:

- - €10,000 for a driver with a disability;
  - €16,000 for a passenger with a disability.

The scheme is open to individuals who meet the specified medical criteria and have received a Primary Medical Certificate to that effect. You can apply for relief either as a driver with a disability or a passenger with a disability. Alternatively, there is provision for a family member of a passenger with a disability to apply.

Find out more about funding and grants here and about tax relief for vehicles purchased for use by people with disabilities here.

How can I find accessible travel information?

You can find more information about on how people with disabilities can travel safely to, from and within Ireland here.

Disabled Drivers Association

You can become a member of Disabled Drivers Association here. You can also join a Facebook page here.

Travel

Can I get travel insurance?

Be Sure Travel Insurance offer do disability travel insurance which includes cover for muscular dystrophy. Here is the link to information on their website

Their phone number is (01) 855 8347.

Should I get a European Health Insurance Card?

Yes, alongside your travel insurance policy it is also recommended to get (and bring with you) a European Health Insurance Card (EHIC). You can apply for the EHIC online here.

If you are travelling in Europe, it gives you access to public health services at no cost. If you have a smart phone, you can download the EHIC app to help you navigate overseas health systems. Remember, your card needs to be renewed every five years. While some sites will try charging for the service it is free through the official site which can be found at ehic.ie.

I want to have a holiday in Ireland?

- Disabled Holidays in Ireland
- Disabled Access Holidays – disabledaccessholidays.com/disabled-holidays/disabled-accessible-resorts/Owners_Direct-Ireland.asp
- Regarding beaches, Disability Federation of Ireland have put together a list of beaches that outlines where you can book a beach wheelchair and how to go about it. You can view the list here.
- You can also plan ahead by using the beaches.ie. Once you input search criteria, you can add filters, such as ‘Disability Access’ and find wheelchair-accessible beaches. You can add a separate filter for beach wheelchairs to find out where to go in your area.

I want to holiday outside of Ireland?

- Relaxing and lively holidays for disabled and able-bodied guests in a barrier-free environment – marysol.org/?lang=en
- Wheel the world – Accessible travel experiences around the world.
- Information on accommodation that has ceiling hoists – chuc.org.uk/

Medical Services

How can I apply for a medical card?

Apply here for a medical card.

How can I apply for a primary medical certificate?The primary medical certificate is issued by the HSE and certifies that a person is a severely disabled and permanently disabled person for the purposes of Disabled Drivers and Disabled Passengers Regulations 1994.You must apply to your local HSE centre for an application form for a primary medical certificate.
For your information, if the HSE refuses the application for a primary medical certificate, you can appeal the refusal to the Disabled Drivers Medical Board of Appeal, National Rehabilitation Hospital, Rochestown Avenue, Dun Laoghaire, Co. Dublin.

What each service is and why might it be required
Long term Illness Scheme

If you have a medical condition covered by the Long-Term Illness Scheme, you can get free drugs, medicines and medical and surgical appliances for the treatment of that condition.

Find out more about the Long Term-Illness Scheme and how to apply here.

Note: Neuropathies are not covered by the scheme but muscular dystrophies and myopathies are.

Neurologist

What is a neurologist?

A neurologist is a specialist physician who diagnoses and treats conditions of the brain, spinal cord and nerves. This can include muscle conditions and disorders that affect thinking and behaviour.

How can I get a neurologist?

A neurologist can help with an initial diagnosis. They can help to insure you get the correct care.

Physiotherapy

What is physiotherapy?

Physiotherapy helps to restore movement and function when someone is affected by injury, illness or disability. It can also help to reduce your risk of injury or illness in the future.

How does physiotherapy help someone with muscular dystrophy?

Most people with neuromuscular conditions benefit from regular physiotherapy. A programme of exercises and stretching is likely to be suggested. For a child, make these fun and part of the daily routine.

How can a person with muscular dystrophy get physiotherapy?

The referral can be made by your neurologist or GP.

Speech therapy

I am having difficulty swallowing why am I attending a speech therapist?

They can assess the muscles used to swallow as the same muscles are used for talking and swallowing. They can then give you advice and exercises to help.

If further assessment is required, they may refer you to a different department.

Cardiologist

What is a cardiologist?

A cardiologist is a physician who is an expert in the care of your heart and blood vessels. They can treat or help prevent a number of cardiovascular problems.

Why do people with muscular dystrophy attend a cardiologist?

Unfortunately, sometimes muscular dystrophy can affect the heart so it is important to get regular checks done on the heart.

What tests might the cardiologist do?

ECG

An electrocardiogram (ECG or EKG) is a quick test using stickers on the chest, arms, and legs to measure the electrical activity of the heart. This test is useful for the detection of heart rhythm abnormalities as well as for enlargement of the heart chambers.

Echocardiogram

An echocardiogram is an ultrasound movie of the inside the heart, like the ultrasounds done during pregnancy. Images are obtained by placing an ultrasound probe on the chest, the belly and the neck to see the heart from every angle.

Chest x-ray

A chest X-ray is an imaging test that uses X-rays to look at the structures and organs in your chest. It can help your healthcare provider see how well your lungs and heart are working.

Chest MRI

A chest MRI (which stands for magnetic resonance imaging) is a scan that uses a magnetic field and radio waves to take detailed pictures of the structures inside your chest and chest wall.

Is an ECG or echocardiogram painful?

No, these tests are not painful.

Respiratory consultant

What is a respiratory consultant?

They will check and monitor your breathing.

Why do people with muscular dystrophy attend a respiratory consultant?

Unfortunately, sometimes muscular dystrophy can affect the lungs so it is important to get regular checks done on your breathing.

What tests might the respiratory consultant do?

Pulmonary function tests (PFTs) are non-invasive tests that show how well the lungs are working. The tests measure lung volume, capacity, rates of flow, and gas exchange.

More info here.

Other

What are night splints and why does my child need them?

As the name suggests, these are splints worn at night. When a joint cannot move through its full range, because of tightened muscles, this is known as a contracture. Night splints help to delay contractures because they hold the joint in a good position during the night. Splints are made from a variety of lightweight materials.

A child should, preferably, wear night splints throughout the night but some children find this uncomfortable. It may be necessary to find a compromise, for example, wearing the splints on weeknights only, or for just half the night. Some children find it easier to wear just one splint at a time, on alternate nights. If it becomes very difficult, try persuading your child to wear them in the evenings while watching television.

Night splints can be uncomfortable in hot weather and wearing a cotton layer underneath them often helps. Sometimes the orthotist (someone who specialises in assessing for and supplying orthoses, such as supportive footwear or splints) will make air holes in the splint, which can help. It can also be difficult to turn over in bed when wearing splints. If night splints are uncomfortable, or your child grows out of them, contact your physiotherapist or orthotist.

What is an occupational therapist?

Occupational therapists work with people in the community to do the everyday activities they want and need to do when faced with illness, injury, disability or challenging life circumstances or events.

More info.

How can I get a genetic test?

You can get a genetic test at the Department of Clinical Genetics, Children’s Health Ireland at Crumlin. In order to be referred to their service, they require a referral letter from a GP or other medical professional. You will find more information here.

Clothing

Adults

Can I get accessible clothing?

Yes, here are some sites that do clothing for adults with a disability.

ADDAPTAFASHION’s goal is to provide specifically adapted, fashionable yet functional clothing for people with disabilities and additional needs or any temporary disability or restrictions in movement. They provide clothing with modifications and certain fastenings and closures to make dressing/undressing easier and more manageable for people with additional needs. They are based in Donegal.

Able2 Wear – Specialist wheelchair clothing and adaptive clothing

Able2 Wear supply wheelchair clothing and adaptive clothing and work closely with wheelchairs users, carers and professionals to develop a range of disabled clothing to meet specialist needs.

ComfortClothing specialise in the design, manufacture and delivery of quality, stylish clothing for men and women. Their clothes are designed to make dressing easier for people with reduced mobility, reduced shopping opportunities or those recovering from surgery.

CHARIOT – CHARIOT is an Irish-owned brand of lifestyle apparel, designing quality sustainable and ethical clothing. Their range of adaptive clothing, Roll Range, is designed from real experience for those who live from their wheelchairs.

Adaptive range for men – Tommy Hilfiger

Kids

My child wants to learn to dress themselves?

That’s great encourage your child to be independent.

To make getting dressed easier here are some useful tips:

- - Loose clothing
  - Clothes without buttons or zips
  - Ankle socks instead of long socks (if your child can’t pull up long socks)
  - Shoes with velcro

Encourage any progress they make and help where needed. If you feel your child can try buttons, zips, and laces, encourage them to try clothes with these.

Can I get accessible clothing for my child?

Yes, here are some sites that do clothing for children with a disability.

SpecialKids.Company – offer a range of adaptive clothing and accessories designed for children with special needs. They create sensory clothing and accessories such as wheelchair covers and chewies. They offer a wide range of sizes, their specialist bodysuits, bibs, vests, incontinence wear and other garments are suitable for 2 to 16 year olds.

Keeks – Our growing list of brands include Billy Footwear, Friendly Shoes, SAM Sensory Clothing, Butler Brand Rain Boot, Mum 2 Mum Bibs, Polly and Andy Socks, VIP large sleep suits, SmartKnit Sensitivity kids and AFO socks.

Independent Living

I what to live alone but what if I fall?

A fall detector could be used or pull cord in different areas of the home.

Find out more here, you can also see different device that may be suit to you.

Additional fall detection device

Skills for life courses

National Learning Network run a number of courses which lead to a QQI Level 2 Major Award in Skill for Life. These courses equip students with foundation level personal, social and work-related skills that will enable them to progress to greater levels of independence and participation in their communities.

More info here

Independent living skills for live – more info.
Can I get funding for assisted living?

You may be entitled to a state-funded assisted living or homecare service if you or a loved one are in need of support to live independently at home and to do the everyday tasks you want to do. Irish Wheelchair Association is the biggest provider of HSE-funded assisted living services for people with disabilities in Ireland. They provide a flexible service across the country carried out by skilled frontline healthcare workers called personal assistants. You can find out more here.

Mortgage protection

Mortgage protection insurance

As this can be a challenging area for MDI members, we suggest you get expert advice from a professional, such as a solicitor. Also, the following two organisations may be able to provide free guidance:

Citizens Information

If you phone them, they may be able to advise on your specific situation. Phone 0818 07 4000. Here is a link to information on mortgage protection from their website. Insurance protection on mortgages (citizensinformation.ie) As you will see it includes a statement that you are not required to take out mortgage protection insurance if you cannot get this insurance, for example, because of a current serious illness.

National Advocacy Service (NAS)

The National Advocacy Service provides a free and confidential advocacy service to adults with a disability, aged 18 years. Phone: 0818 07 3000

Entitlements

Do I get a reduction on aids or equipment?

If you live in Ireland and you have a physical or mental disability, you may get a refund of Value-Added Tax (VAT) on certain aids and appliances that you need.

A refund may also be available to someone who pays for aids and appliances that are for the exclusive use of someone else who has a disability.

More info here

How can I apply for disability allowance?

You can apply here.

Can I work and still receive disability?

You can work and earn up to €165 a week (after paying PRSI, pension contributions and union dues) without your DA payment being affected. If you earn more than €165 a week, 50% of your earnings between €165 and €375 will not be taken into account in the DA means test. Any earnings over €375 are assessed in full.

You can get additional information here.

Are there other social welfare benefits I may be entitled to?

You can find out about extra social welfare benefits you may be entitled to here.

I need to make adaptions to my home?

A Housing Adaptation Grant for Older People and People with a Disability is available from local authorities if you need to make changes to a home to make it more suitable for a person with a physical, sensory or intellectual disability or mental health difficulty.

Find out more here.

Please also see that fixed track hoists are now covered under Housing Adaptation Grant

Home from Home Apartment

What is Home from Home?

‘Home from Home’ is a self-catering apartment. It is a self-contained fully wheelchair accessible apartment which is available for short term stays for people with a physical disability.

This four-star approved self-catering apartment consists of:

- 4 bedrooms
- a kitchen
- a lounge area.

Free Wi-Fi is available throughout the apartment.

What are the charge rates?

MDI requests a donation of €30 per room per night for the use of the apartment. Please note that if you only book one room, the other rooms may be occupied by other guests during your stay.

Is there transport to Home from Home?

There are public buses that stop nearby; they are the 76 bus and the 26 bus.

Where is Home from Home?

Home form Home is located at MDI House, 75 Lucan Road, Chapelizod, Dublin 20, D20 DR77.

Is everything provided?

Bed linens and sheets are provided but we do not provide towels. Home from Home

is fully equipped with wheelchair friendly equipment and appliances.

The apartment consists of the following equipment:

- - Hoists – both ceiling and portable hoists
  - Shower chairs
  - Shower trolly
  - Grab rails
  - Hi-lo electric / profile beds
  - Intercom system
  - Emergency call buttons
  - Adjustable kitchen worktop
  - Air mattresses.
  - Body dryer

How do I make a booking?

To book your stay in the MDI Home from Home Apartment, please phone the MDI office on +353-1-6236414 (during office hours, 9am-5pm) or email: reception@mdi.ie.

Is smoking allowed?

No, MDI has a strict no smoking policy. If you wish to smoke, please use the courtyard at the back of the building.

What are the check-in and check-out times?

Check in is between 3-6pm, please make your approximate time of arrival known before arriving.

Check out is at 12 noon.

What should I do if an alarm goes off accidently?

In the unlikely event of a fire alarm going off in error, please follow the instructions below.

1. 1. Ensure there is no fire.
  2. Turn off the alarm by:

- - - pressing any of the 4 arrows
    - press arrow number 2 four times and press enter
    - press the ‘silence the alarm’ button (2nd button in on the bottom row)
    - Press the reset button (5th button in on the bottom row)

The alarm should now have ceased and reset.

Please phone the alarm company 0818-464444 and explain that the alarm has gone off in error and explain there is no need to contact the fire brigade.

Please be aware failure to notify the alarm company could result in the fire brigade being contacted and calling to the premises resulting in a penalty of €500.

What should we do if an alarm goes off due to a fire?

If the alarm goes due to a fire there a directional drawing and lighting to the nearest exit. This information will be provided on our induction form.

How will I know how to use the hoists? Will I be shown?

You will be given demonstrations on hoists and beds during your check in. Should you need further assistance there are manuals in the bedside lockers.

What appliances are provided in the kitchen?

The kitchen is equipped with a fridge freezer, oven, hob, dishwasher, washing machine, tumble drier and the necessary kitchen utensils.

Is the heating system adjustable?

All rooms and corridors are heated by an under-floor heating system. Several thermostats are situated in the bedrooms and other areas. The default setting is 21 degrees; adjustments can be made. If you wish to turn off the heating in your room, please press and hold the button on the bottom right-hand side of the controller for three seconds.

Are assistance animals allowed?

Yes, we welcome all assistance animals at the Home from Home Apartment.

Is there a security system?

Yes, we have an active security system. The operation of the security system will be explained to you on the day of arrival.

Will I be provided emergency numbers?

Yes, all numbers will be given to you in case of an emergency.

Are there any restaurants nearby?

Yes, the WEST COUNTY HOTEL is nearby. It’s just 50 meters to the left-hand side when you go out the gates.

Is there a TV in the apartment?

Yes, for channel numbers you can check the guest welcome book.

Frequently Asked Questions

Frequently Asked Questions (FAQs)

Muscular dystrophy

1. Muscular dystrophies

Family

Talking to your child

Parents

Siblings

Other

Extra activities for children

Exercise

Transport

Travel

Medical Services

Neurologist

Physiotherapy

Speech therapy

Cardiologist

Respiratory consultant

Other

Clothing

Adults

Kids

Independent Living

Entitlements

Home from Home Apartment

What is Home from Home?

1. Muscular Dystrophies

2. Myotonic Disorders

3. Congenital Myopathies

4. Mitochondrial Myopathies

5. Metabolic Disorders

6. Periodic Paralyses

7. Autoimmune Myositis

8. Spinal Muscular Atrophies

9. Hereditary Motor and Sensory Neuropathies

10. Disorders of the Neuromuscular Junction

11. Friedreich’s Ataxia

12. Other (Please Specify)

13. Unspecified