I was diagnosed with MND in March 2010 aged 46. Given what I know now, if I was being diagnosed with MND today, this is how I would go about dealing with the diagnosis, finding out information and living with MND.
In terms of living with MND, I’ve gone into detail on Ventilation, Feeding Tube/Diet, Technology, Medication, Wheelchair/WAV, Hoist, Physiotherapy, Environment and also a Sundry section of ad hoc items. Where possible I’ve hyperlinked to the sites where you can get more information on the products and services which keep me going.
• Share news of diagnosis with family, friends & employer ASAP
• Keep working for as long as feasible
• Get financial affairs in order – including will, Power of Attorney (POA) and clarify benefit entitlements
• Research about MND and its likely progression
• Consider what adaptions will be required as MND progresses
• Assess whether moving house will ultimately be required before undertaking any major adaptions
• Consider counselling for yourself and immediate family
• Front load your bucket list!!
UK & International:
I’ve been using NIV since November 2012, initially I was using a Nippy 3+. I’m currently transitioning over to the Stellar 150. I use a Phillips E70 Cough Assist. My main mask is a Phillips Dreamwear nasal pillow, which I use with lightweight Resmed tubing.
Although your Home Ventilation team will provide masks and accessories you can also buy them directly from ResMed and Nippy, both companies also sell individual components e.g. for masks, which avoids the expense and hassle of replacing the whole unit.
For information on feeding tubes visit MyTube. Should you choose to have a feeding tube fitted, this is best done well ahead of time instead of as a response to a crisis. I currently take 4-6 Fortisip Compacts a day, leaving me able to have small amounts of food and drink which I really enjoy and not have to worry about calories. You can take control of your own supplement deliveries through Nutricia Homeward.
I use iTracker to control my MacBook and iMac – this is a $35 application which gives me complete control of my computers and utilises the built in on-screen keyboard. iTracker is a head control application. Here is my YouTube video on how to use iTracker.
Before iTracker was launched I used Tobii Eyegaze which enables you to control Windows computers. This is the leading product which enables paralysed folks to use their computer using their eyes. As my head control is still good I’m still able to use iTracker which is a much more powerful application than Tobil Eyegaze.
I can easily access Amazon and other online sellers – worth investing £79 on Amazon Prime to get next day free delivery on most products. I’m able to do most of my shopping online, I use Tesco for groceries. Tesco have a £42 a year Tesco Delivery Saver plan which allows you to get home deliveries as often as you want.
In terms of entertainment I can access Amazon Video, Netflix, YouTube and Spotify through my computer, these services are also accessible through my Samsung Smart TV.
I’m currently on very little medication – I take a 5ml maintenance dose daily of Clarithromycin to dampen down my inflammatory response, which stops me over secretioning. Otherwise, I only take medication in response to specific problems.
My main wheelchair is a Puma 40 power chair which is versatile chair which can be tailored to each individual. One of the main features of the chair is a 45-degree tilt function which is essential for pressure relief. I use a Jay 2 Deep Contour cushion.
One of the main problems with power chairs is that fitting them into a Wheelchair Accessible Vehicle (WAV) can be very challenging, particularly for adults. To access my WAV, I use a Fuze T50 manual tilt in space chair.
My WAV is a Kia Sedona which is now out of production. The conversion was done by Brotherwood, who have a wide range of high quality WAV conversions available.
I use a Likorall 200 tracking hoist in my bedroom and bathroom. A great feature of this system is that it’s supported from the floor and not suspended from the ceiling, making the system easy to install and increasing its flexibility.
For travelling and as a backup to my tracking hoist I have an Ardoo portable hoist. This hoist also comes with a Standaid option. I’ve also used a portable tracking hoist which can be easily erected in any location.
My care team assist me with physio 4 times a day. My regime consists of 3 different leg stretches, 3 arm stretches and 2 hand/wrist stretches. I also use a Motomed Viva 2 cycling machine for 40 – 60 minutes a day. To supplement my exercise regime, I use a range of therapy tools to help maintain my muscle mass and mobility e.g. therapy balls, pilates balls and a Franklin ball.
I find listening to music very helpful, particularly at night as a distraction from the constant NIV sound. I’ve also added several playlists to my YouTube channel which I can play through my TV, computer or phone. I’ve found having house plants and being able to see a colourful garden beneficial to my sense of wellbeing.
• Voice banking – I’ve banked my voice with Model Talker
• Care Firm – Pulse Community Healthcare – 24/7 complex care across the UK
• Clothing – I wear Underarmour sports gear in a size bigger than normal
• Comfortable shoes – I prefer slip on trainers in the next size up
• Adjustable bed
• Air purifier
• Vitamin D lamp
• Insulated tumbler for keeping drinks hot/cold
• Drinking straws
• Bedside metal trolley
• Hot water dispenser
• ResMed ventilation pillow
• Pulse Oximeter
• Remote Control Blinds
• Clos-o-mat toilet
• Height adjustable bath
• Hoist Sling
• Purell Hand Sanitiser
• Latex free gloves
MND Scotland does not specifically endorse any of the products used by Calum, other brands and suppliers are available. In addition, not all of the products mentioned will be provided by Statutory Services and several will only be provided following medical advice.
If you have a story to share please get in touch with Niamh Callan and Craig Watson in the Communications team at firstname.lastname@example.org
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