Stay Fit, Stay Healthy, Stay Happy


Stay Fit, Stay Healthy, Stay Happy

It can sometimes seem the hardest challenge to keep healthy when you have an ultra-rare condition like Alstrom Syndrome.

Not only due to dual sensory loss but also the body stores fats making it even harder to keep to a healthy weight.

ASUK have brought together some top tips from families about professionals from the AS clinic on how they stay fit, healthy and happy.

Check out the information below, it contains some fabulous recipes, top tips for equipment to keep you independent and ways our members are keeping active.

Please get in touch if you would like to share your top tips, recipes or equipment which you wouldn’t be without.

Firstly, what have our members been up to during lock down.

Click on the video below to view how members have been keeping active throughout!

In June 2020, BBC Children in Need kindly funded ASUK to develop a cookbook to inspire others to cook healthy dishes and be inspired to use equipment that can empower members to be more independent and cook up a storm in the kitchen!

Check out below some of these recipes:

Follow Melissa as she makes these quick, easy and healthy kebabs.

…and if you were wondering what to put with them, well follow Melissa creating a healthy yogurt dip, perfect to go with your kebabs, simples!!

Check out Melissa cooking up a storm with her yummy chocolate orange brownies. Melissa uses alternatives to the usual recipe to make them lower in sugar. If you use gluten free flour they would also be gluten free. They may not be the healthiest option but our members showcasing their cooking skills is a great confidence builder and hopefully will inspire others to get their whisks out!

The NHS also offer a range of delicious recipes on their website ‘Change 4 Life’, why not check these out HERE

Keema recipe 

Melissa shares her family recipe. 

Keema, this is a family favourite and is requested frequently at my house it’s really easy to make and is super healthy plus you can pack it full of your favourite veg!  

The blend of spices I use this as a base in most of the home-made curries I make that just as good as a takeaway and are a fraction of the price and five times as healthy. 

Spice mix:  

1 tablespoon of Gara masala 
1 teaspoon of chilli powder
1 teaspoon of coriander
1 teaspoon of Cumin
Half a teaspoon of paprika.  

If you prefer a spicy curry then add more chilli and Cumin. If you don’t then you could always just put half a teaspoon in, just experiment with the flavour, it’s all down to your personal preference. 

Keema Ingredients:
One finely chopped onion
Two cloves of garlic, chopped
500g of 5% fat beef mince 
One tin of chopped tomatoes
Spice mix
A handful of peas
Bombay potatoes (separate recipe below)

Recipe 

First cook the onion and garlic until translucent or for about 10 minutes, then add the spices and cook for a further two minutes. Add the mince and brown this, which usually takes between five and eight minutes add the tinned tomatoes the Bombay potatoes and the peas cook for a further three minutes then turn the heat down to low and simmer for a further 30 minutes. Serve with your preferred side and dip. 

Bombay potatoes: 

For these I used two large, or three medium potatoes peeled and cut into cubes. I add them to a saucepan filled with water then add half a teaspoon of ground black pepper, 3 teaspoons of chilli powder, 2 tablespoons of curry powder and a pinch of salt. I then cook the potatoes until soft which usually takes about 20 minutes the potatoes for this particular meal, I cooked for 22 minutes. 

Dip:  

2 tablespoons of natural Greek yoghurt and 2 teaspoons of mango chutney, a pinch of black pepper and salt. Add all ingredients into a bowl and mix to combine. This dip can be enjoyed with anything curries chilli fajitas or as a dressing for potato salad. 

Spaghetti and meatballs!

One night Melissa, fancied doing a lady and the tramp moment; this spaghetti and meatball recipe is super quick to make, healthy and extremely tasty! 

Ingredients
For the meatballs

500 g of 5% fat lean mince, you could use Quorn mince or turkey mince, this made 12 good sized meatballs.

You can use which other spices you like and make this recipe personal to you but this is what I used:

1 1/2 teaspoons of paprika
1 1/2 teaspoons of garlic powder
1/4 teaspoon of chilli powder

Pinch salt and ground black pepper. 

Method

In a mixing bowl add your mince and all the spices.
Mix thoroughly to combine then split the mixture into roughly 12 equal pieces and shape into balls leave in the fridge for a minimum of 15 minutes.
There is no maximum time for taking the meatballs out and you could make these the day before or freeze them and use at a later date.
Pop onto a baking tray and cook for 20 minutes in the oven at 180°.

Top Tip: I lined the baking tray with greaseproof paper to make the tray easier to clean afterwards. 

The sauce

One onion chopped
Two cloves of garlic crushed
One tin of chopped tomatoes
Half a tube of tomato purée
150 mL of 
Passata
 A handful of Italian herbs
One stock cube
Pinch of salt and pepper.
 

This sauce is fantastic, you can have it with your meatballs or have it on its own with pasta. You can also add in other ingredients if you have them; sometimes I make the sauce and add one pepper or mushrooms. It’s also a great sauce to have with chicken which I bake in the oven then put into the sauce afterwards. 

Method

First cook the onion, garlic and Italian herbs, adding a little bit of water if they start to stick to the bottom of the pan, for approximately 10 minutes or until translucent. Add your tin of tomatoes then fill approximately a quarter of the tin with water and add to the pan, here I add a couple of teaspoons of sweetener as it brings out the flavour of tomatoes but this is completely optional. Add the tomato purée, passata and stock cube then continue to stir the mixture until the pan begins to bubble once this happens turn to low and simmer for a minimum of 30 minutes. This is a minimum time but I’ve found the longer you cook your sauce for, the more flavour develops, season the sauce with black pepper and salt if you feel the mixture needs it. 

If you want a smokier sauce a great addition is 1 teaspoon of smoked paprika it goes really well and gives your spaghetti and meatballs a Mexican feel. This sauce can also be frozen and you can bring it out for other meals as I’ve said before I have also added chicken or seafood so this sauce is really versatile. 

Cook your spaghetti or pasta then once it is dry, tip the sauce over the spaghetti and mix thoroughly, also if you would prefer to cook your meatballs in the sauce so the flavour soaks through cook in the oven for approximately 10 to 15 minutes then make up the time to 20 minutes once you’ve added your meatballs to the sauce.

 

Veggie chilli with herby rice 

Simmie shares with us one of her favourite recipes.

It might be meatless, but smoky chipotle makes this one flavourful chilli. 

Serves 4 

If you wish, serve with a dollop of fat-free natural fromage frais, sprinkled with a pinch of paprika alongside your rice. 

Ingredients 

Low-calorie cooking spray  

1 large onion, finely chopped 

1 courgette, cut into small cubes 

1 carrot, peeled and cut into small cubes 

1 red and 1 yellow pepper, deseeded and cut into small cubes 

2 garlic cloves, finely chopped 

1 tsp finely grated fresh root ginger 

1 level tbsp chipotle chilli paste 

100g dried red lentils, washed and drained 

4 tbsp tomato purée 

2 x 400g cans chopped tomatoes 

198g can sweetcorn, drained 

2 x 400g cans red kidney beans in chilli sauce 

300g dried long-grain rice 

A handful of fresh coriander, roughly chopped 

Salt and freshly ground black pepper 

½ red chilli, deseeded and finely chopped 

Lime wedges, to serve 

Method 

Place a wide pan sprayed with low-calorie cooking spray over a medium heat. Add the onion,  courgette, carrot, peppers, garlic and ginger and fry for 5 minutes, or until softened. Add the  chipotle paste and fry for 1-2 minutes. 

Stir in the lentils, tomato purée, tomatoes and 250ml water, then bring to the boil and cook for 15-20 minutes. Add the sweetcorn and beans and cook for a further 10 minutes. 

Cook the rice according to the packet instructions. Drain, then stir in half the coriander. 

Remove the chilli from the heat, season well, then scatter over the remaining coriander and the red chilli.  

Serve with the rice and lime wedges for squeezing over. 

Cooking pot on stove with vegetables,. Mushrooms and steam. Boiling water in pan. Saucepan with tomatoes, peppers, onions, parsley. Vector illustration in flat stock illustration

Aubergine Chilli Tray Bake 

Serves 2 

Ingredients  

1 Aubergine (or 2 if preferred) 

1/2 and onion, finely chopped 

2 garlic cloves 

1/2 tsp dried thyme 

1 tsp ground cumin 

2 tsp mild chilli powder 

1/2 tsp fine sea salt 

tbsps tomato puree 

1/2 tin kidney beans 

1/2 tin chickpeas 

1/2 tin chopped tomatoes mixed with 2 tbsp water 

2 tsp olive oil 

80 g light mature cheddar 

Pepper 

Method 

  1. Preheat oven to 220 degrees, 200 if fan assisted
  2. Slice aubergine in half lengthways, set one half aside and roughly chop the other and place in a roasting tin or baking tray
  3. Add the onion, garlic, thyme, cumin, chilli powder, salt, tomato puree, and mix the all together with hands to ensure the veg is well coated.  
  4. Add the chickpeas, kidney beans, and chopped tomatoes, adding the water to the chopped tomatoes and swirling round before adding and mix once more 
  5. Cut the remaining aubergine half into manageable chunks and place on top of the other ingredients.  Drizzle oil over the chunks and season with pepper. 
  6. Cover with foil and roast for 45 mins
  7. Remove from the oven, sprinkle with the cheese and grill on a medium heat for 4-5 mins
  8. Serve hot or cold

During lockdown its normal to feel worried and anxious as there are lots of uncertainties. Catarina, Paediatric Diabetes Dietitian from Birmingham Women’s and Children’s NHS Foundation Trust gives her top tips to try and stay healthy during lock-down.

Looking after your mental health

  1. Exercise; exercise can really good for your mental as well as your physical well being. Set aside 1 hour a day for exercise – try to make this fun e.g. something you can do as a family and make sure it is something you enjoy. 
  2. Sleep; good quality sleep makes a big difference to how you feel mentally and physically. Maintain regular sleeping patterns and good sleeping practices such as cutting down on caffeine and reducing screen time before bed. Go to bed at a set time each day.
  3. Diet: Have 3 set meals a day. Set maximum of 3 snacks in a basket for the day- once these snacks are gone no more snacks on this day- aim to stick to healthy choices
  4. Look after your body; eat healthy balanced meals and drink plenty of water
  5. Focus on the present rather than worry about the future. Lots of relaxation videos our there and meditation apps
  6. Set up buddy groups with family members or friends where you can have regular checks on each other
  7. Try a reward system- those who exercise every day get a trip to the home cinema with popcorn at the end of the week or bake your own pizza at home
  8. Stay connected with friends and family through video calls
  9. Routine is crucial! Be kind to yourself!!!
  10. Try to relax and focus on positive things. Do things you enjoy.

Snacking

  • During this lockdown period, it is very easy to fall into the habit of snacking more regularly than you normally do. The NHS has some top tips on their website of snacks under 100 calories. Check out the Change 4 Life website HERE and also the NHS Live Well website HERE
  • One good tip is ‘leave it on the shelf‘ if it isn’t in the house you can’t eat it!
  • Distracting younger (and older!) children with activities and games may help as we all reach for snacks when we’re a bit bored or if we’re stressed.

The importance of Vitamin D

Vitamin D works with calcium and phosphorus for healthy bones, muscles and teeth. Even if you have a calcium rich diet without vitamin D you cannot absorb the calcium into your bones.

Vitamin D also plays a vital role in immune response, evidence suggests that vitamin D supplementation supports in the combat against respiratory infections.

Sunshine not food is where most of the vitamin D comes from. So even a healthy, well balanced diet that provides all the vitamins you need is unlikely  to provide enough vitamin D to meet your requirements.

Which foods contain vitamin D

  • Oily fish such as salmon, sardines, pilchards, trout, herring, kippers and eel contain reasonable amounts of vitamin D
  • Cod liver oil, not recommended in pregnancy
  • Egg yolk, meat, offal and milk contain small amounts but this varies during the seasons
  • Margarine, some breakfast cereals, infant formula milk and some yoghurts have added vitamin D

Vitamin D supplementation

Government recommends that children from the age of 1 and all adults should take a vitamin D supplementation of 10 micrograms particular in winter and autumn.

During lockdown where you are less likely to be outdoors particularly if you are shielding its important to consider taking a supplement.

There’s a wide variety available in supermarkets from drops to tablets depending on your preference.

Eat Well Guide

The Eatwell Guide has replaced the eatwell plate and continues to define the government’s advice on a healthy balanced diet. The Eatwell Guide is a visual representation of how different foods and drinks can contribute towards a healthy balanced diet.

The Eatwell Guide is based on the 5 food groups and shows how much of what you eat should come from each food group.

More information about the guide and how it can be incorporated into your lifestyle can be found on the NHS website HERE

Get in touch

If you have any top tips that you think would help other families – e.g. ways of doing things differently that have been positive for you then let us know so we can spread the word.

ASUK were kindly awarded funding from Sport England to empower families to get active. This funding enabled ASUK to set-up a ‘Bike Club’ to purchase tandems and exercise equipment for families. Tandems are a great way to get active together.

ASUK now have a family fund which families can apply for equipment to help them stay active such as tandems, indoor exercise equipment and trampolines for the garden. If you are interested in applying, please speak with your Family Support Worker who will be able to assist you with the application.

The Road to Independence by Kion Leeson Beevers

I was about 5 years old when I started using a cane. I had a Mobility Teacher called Lisa, who I am still friends with to this day. She started to teach me how to use a cane. It takes time to learn what to do, but it’s worth it to learn the skills. I don’t go anywhere without my cane now – it’s part of me that I can’t do without.

I don’t like bumping into things or people, so my cane gives me independence. Because I started very young my cane has always been a part of my life

My best advice to anyone who is trying to develop their independence, especially when you’re using your cane is; don’t be scared, JUST DO IT! What I mean by that is, when you’re out walking with your cane, it takes time to build up your confidence – take no notice of people around you, who don’t know you. You may think they are looking at you or they might say a stupid remark- just ignore them, don’t waste your time on them- don’t let their remarks bother you – be strong and block it out- don’t dwell on it.

Listen to the advice of your family, Mobility Teacher or carers as they know you best and will be doing the best for you. Take no notice of random strangers-most of them don’t have a clue about VI!

It’s automatic to me now to use a cane it’s part of my life. I keep it by the front door. I go out independently, I know quite a few routes and get the bus around Rotherham. I make maps in my head so I always know where I am. I have been assessed for a guide dog and am on the waiting list now. Without building up confidence to use my cane or working on routes and travelling independently I would never have been assessed by Guide Dogs for the Blind. I passed the assessment and I am now on the waiting list for a dog. I have a busy life, on week days I help out at my local Sight and Sound charity,  on Saturdays I go out with my carer and on Sundays I spend time with my family. Living my life is important to me!

My best advice to you is: Don’t let people or their remarks get in your way- Just do it- get out there and live your life!

Kion is 19, a season ticket holder for Rotherham United where he attends as many games as possible to support his favourite team. He also loves going to live music events and is a hardened rock music fan. He also has a keen interest in cars -the faster the better!

Kion also took part in our driving experience sessions, which was a dream come true!

My Google Assistant is like a friend to me! by Ruby and her older sister Khaynaat

My Google Assistant (GA) is my friend, I speak to it and it gives me lots of answers. I ask it questions like what is the weather today or what has happened in the news, it always gives me the answers. I also ask GA to play music things like Little Mix songs who are one of my favourites.  I had to teach it to find Bollywood music for me, now it can find radio stations and all sorts of different Bollywood style music. If you use your GA a lot it starts to know what you like and it can find things easily for you.

I have lots of fun with my GA, I ask it to tell me jokes and I like to ask GA what type of music it likes! My GA makes me laugh because it sometimes gives funny answers! The GA keeps me entertained when I am doing things in my room. Google has helped me to find lots of things- it has helped me to stop being bored and find things out for myself.

Khaynaat, Ruby’s older Sister commented;

‘My family and I have been really surprised how Ruby is using her GA. I thought she would never use it, as she found the voice over on the ipad so annoying and frustrating for her to use. Before Ruby had a GA she would listen to music on her radio. I would have to help her find radio stations, but now I’ve noticed that she is a lot more independent, searching on her GA for music or asking questions about things she wants to know. Using Ruby’s GA has improved her overall confidence to ask questions. I’ve heard her chat more to family members and she informs us as to what is happening in the local area as she listens to the news. Ruby also gives us her opinion as to what has happened, which is great as we end up chatting much more about things.’

Finally Ruby sums up;

‘I would tell other people to use their Google Assistants, because it is fun to listen to music, find out what the date is or what the weather is going to be like. Using your GA will stop you from struggling to find out things. Instead of asking other people questions, now I can ask my GA questions, which makes me more independent and I can do it by myself!’

Tell everyone I can tell the time! 

Aisha is 12 years old, she loves singing and is part of a local choir. She likes Justin Bieber, Ed Sheeran, Stormzy and Burna Boy.  She also likes reading her Braille books, at present she is reading about different types of transport.

After I went to my last Alstom Clinic at Birmingham Women’s and Children’s Hospital ASUK sent me a talking watch. I wear it on different wrists, I swop it around depending on which hand is free. My watch tells me the time, day and date. I press a button on the side of the watch and it starts talking. I like to tell my mum the time in case she forgets. I have not had a chance to wear it in school because it is shut due to the Covid Virus.  I really want to show it off and tell everyone I can tell the time!

Before I had a watch I used my phone, it’s much easier to have watch because it is right there on my wrist and I can instantly find out if it’s time to do something.  It also helps me to remember because now I know what the day and date is.

I really like my watch because I can use it by myself. I want to go to residential school in September 2020. It’s important for me to do things by myself because I’m growing up.  I don’t want to forget how to do things, I want to learn how to do new things, so that when I’m older I will know what to do in my life.

Top Tips

  • If someone wants a talking watch they should order it straight away, because it will help you and you don’t have to ask other people what time is it?
  • Although I’m excited to wear my watch, don’t wear it in bed!

Mums Comment ‘My daughter is very happy with her watch, she was so excited to receive it. The watch has made such a difference to her, she can tell me the time whenever she wants to. It is so nice to see her being independent, she feels the same as other people as she can tell them the time instead of asking them.  It also makes my daughter have a sense of responsibility as she takes care of it and doesn’t want to loose it and depend on people to know the time and date.’

Haris Hamid is 18 years old, he attends New College Worcester Residential College (NCW) as a full-time student. In his article he shares his experiences of preparing, moving and settling into NCW and his new found confidence gave him the confidence to be ready for any challenges!

Why did you decide to go to Residential College?

I used to attend a secondary school with a specialist visually impaired unit. The staff there prepared me for changes that would affect my life as I grow up.  My school was very good at supporting pupils to think about residential college as a place to continue their education and develop all round living skills.

When I was in year 8 and 9, I started to look into colleges and what special needs support for pupils with visual impairment (VI) was all about. Some of the pupils from my school had moved onto the Royal National College (RNC) in Herefordshire. My dad and I went to RNC for the day, I followed this up with a residential weekend called ‘Have a Go’.  I visited my local colleges too, but I did not think they could support my independence skills and how to become an independent traveller. ASUK staff also recommended that I visit New College Worcester and Queen Alexander College in Birmingham. I put a case study together about each place  I had visited – depending on what the colleges could offer me, what I would learn and how my independence skills could be developed.  I showed all this to my family and together we made a decision. At the end of year 10, I took part in a three day assessment at NCW – this is where I found out what it was like to be away from home, and how much more independent I needed to become. I knew NCW was the right place for me!

How did your family feel about that?

A friend of mine, who I knew at school is a student at RNC, when I heard that he could make a Chicken Korma without any help I was very impressed- I wanted to be like that! My dad came with me to all the college visits, although he did not want me to leave home he began to understand how much more VI people could do for themselves once they were away from home. My mum was upset for me leaving but she was happy for me to go, my siblings were happy for me to go too. I’m now working towards making a Chicken Korma without any help!

How did you prepare for college?

To help me prepare for starting NCW my Mobility Officer started preparing me for local train journeys, this helped me to start planning longer train journeys. I was also taking BTEC cooking skills in school, which was improving my skills in the kitchen. I did feel a lot of pressure worrying about funding from the local authority funding for my college place.  Once this was in place I could relax and started to plan what clothes, medication and technology I wanted to take with me

What was starting NCW like?

I had a really good experience, although it was daunting it was exciting at the same time. I fitted in straight away, as people were like me. I knew another person there with Alstrom Syndrome, that helped me as I could talk to someone who understood all about AS. At the end of the first week I took part in a camp activity that was great fun! I like to be around people with VI, they understand me and I feel like I fit in more.

How I’ve changed

My secondary school had given me hope, they taught me that I had nothing to fear…I was ready for challenges that came in my way. By the time a VI person goes back home, they have changed into a completely new person and they can do more for themselves. I have changed, I can do so much more, and being a residential student has really built up my confidence. The first time I went on a train by myself, my Mobility Officer shadowed me as I used travel assist support.

Now I can book trains and taxis independently, when I travel I use travel assist and feel secure in all my bookings and travel. Recently I took a friend from NCW to visit friends at RNC Hereford. I booked all the trains and taxis, got us both there and back safely, while managing to get refreshments along the way.  I was really happy with this, it was a great achievement for me! While at college I attend the local mosque, I used to be accompanied by a community service volunteer, now I travel there independently.

My Top Tips for Parents/Carers

What parents/carers need to do is speak to more students who are already students in residential colleges so they can tell them what it’s like to be there. Their experience and their narration is much better than listening to the staff because it’s their experience and their lives!

Put a case study together of each college you have been to visit exploring how it will meet you son/daughters needs and why it will not meet them. This is really important to put forward as evidence to get your funding from the local authority for your place.

My Top Tips for Young People (YP)

If other young people are thinking about residential college, go for lots of visits and ask lots of questions.  Take part in any residential college weekend activities, so you get a feel for what it’s like to be away from home.  You will become more confident and it being away from home will develop all of your skills!

I am more confident than I ever thought I would be. Who would have thought that I could sit on a train on my own, the fact that I could grasp travelling independently is a wonderful gift to my confidence!

ASUK were delighted when Haris agreed to support one of our workshops at our conference in 2019. Haris provided a workshop alongside one of our Trustees, Alex to showcase the equipment and technology that they use which helps them stay independent.