When a loving family member or friend tells you: "I have been diagnosed with Motor Neurone Disease - ALS"......what do you do?
When my sister Jaspal said those words to me I was puzzled as I had never heard of the disease. The first thing I did was Google 'Motor Neurone Disease' and then it hit me hard - it was a 'rapidly progressing terminal illness with an average life expectancy from 2-5 years. Over 5,000 people are affected in UK at any one time'.
Jaspal lived with the disease for 10 years. I was one of her carers for this time and through my experience supporting Jaspal, I have compiled a list of 10 things you should do when a loved ones tells you they have been diagnosed with MND.
How to Prepare Yourself
Understand what they will be going through by researching what MND is. There are films, TV dramas and books which make it easier for you to visualise and feel the difficulties they will face:
The Theory of Everything a biographical drama about Stephen Hawkings.
There are many other books and documentaries but these are my three choices.
How to Find Helpful Contacts
The World Wide Web and social media is full of contacts for help, guidance and knowledge. MND Association has a great deal of information. You can also find many MND community groups set up in Facebook and Twitter.
Identifying Grants & Entitlements
It is always good to know what financial grants and funds they are entitled to. For equipment, alterations at home, mobility and communication you can find information on MND support. For State benefits visit the government portals for Employment Support Allowance (ESA) and Personal Independence Payment (PIP).
It is important to keep their muscles strong for as long as possible. Try to do some kind of gentle exercise every day - a short walk or stretching. A daily massage with essential oils makes a huge difference, make time in your daily routine. It's also worth looking into other forms of muscle stimulation like Reiki or Acupressure.
Where to Find Nutritional Recipes
Eating will become increasingly difficult and I recommend some special recipes created to help with swallowing and chewing by nutritionist and Cordon Bleu Chef Jane Clarke and MND Association Eating & Drinking,
Juicing is also a great way to help them get the nutrition they need and there is an abundance of recipes on the internet for juicing like Dr Axe.
Organise Family & Friends Support
Taking care of a loved one with MND can be physically and mentally demanding. Don't be shy in asking for help, organise days for family and friends to come and visit. It can be overwhelming for family to care for their loved ones so it is always a good idea to give them some time off to re charge their batteries by organising friends to come around and help out.
Find A Carer
Carers have a big role to play and it is important to look for one early on - it can take time to find the right person for you. A carer needs to know their likes and dislikes and make their day-to-day living more comfortable. You can find information on MND Assoc - Carers for financial guidance and benefits.
Plan Things They Have Always Wanted To Do
Nowadays the trendy phrase is to 'create a bucket list'. Sit with them and go through a list of all the things they have always wanted to do. Make this happen by getting the support from family and friends and raising funds by organising events. Make the most of your remaining time together by creating great memories.
Keep Their Minds Active
The brain is a very powerful tool which is unaffected by some MND sufferers, so keep their minds as active as possible. Jaspal began to play the Rubik's cube and when she lost her voice and use of her hands she would instruct us by twitching her nose for right or left and blinking her eyes for yes or no. Watch game shows on TV and play family games.