Interview with Lynette

Hi Lynette, thank you for your time and willingness to share your experiences caring for Phil and to talk about some of the challenges you are both faced with.

Q: Tell us how and when Phil was diagnosed with MND and how you both dealt with the diagnosis from an emotional perspective?

A: Phillip was diagnosed on the 6th of June 2019, he had symptoms for about a year before diagnosis. Slurred speech was the first symptom and then emotional instability, he had a very hard time controlling his emotions. It took a year to be diagnosed and was a massive shock, to be honest, it’s still a shock! There are so many emotions you experience when faced with a ruthless terminal diagnosis, fear, anger, abandonment, heartbreak, pain, uncertainty, confusion, cheated, anxiety and depression are just a few. It’s hard to deal with but we have managed by focusing on the love we have received and looking for positives, we also have learned to live only for today, tomorrow will take care of itself.

Q: You have 2 kids Lynette, how are they coping with their dad having Motor Neuron Disease and how challenging has this been on them?

A: We have as a family been living in limbo for a while, trying to manage the challenges with each loss Phillip has faced. Both children are fully trained to operate all his equipment including his life-support machines. It’s really hard on them to see their once powerful strong dad lose his independence and need 24/7 care but I’m proud to say they have adjusted and are a major part of him still being alive and able to fight MND. We do have really bad days but we also have really good days and we stay grateful for that.

Q: I’m sure that you had to make some drastic changes due to Phil’s progression to the house and to your lifestyles. Tell us a little more about this?

A: Yes we converted our double garage into a new bedroom and made it wheelchair friendly and created more space for all the equipment needed to properly care for Phillip. Our lifestyles changed drastically as Phillip had to stop working as soon as he was diagnosed as it was no longer safe for him to travel and his income stopped. I started a catering business at home so I could be with him to care for him and work from home.

Q: Lynettte, I met you about 1 year ago and you seem to have an incredible knowledge of how to care for Phil. I’d like to know what type of training you had and what the most important lessons you’ve learnt are as a wife and his carer?

A: I taught myself everything, mainly through networking on MND groups around the world, trial, and error and watching YouTube videos. We spent 33 days in ICU and I knew I had to learn as much as possible whilst there as nursing care for a vented patient is extremely expensive. The lessons I’ve learned are to try to be one step ahead of the disease in terms of your patient’s needs but at the same time live for today so as not to overwhelm yourself with the sheer brutality of this disease.

Q: MND from my perspective & understanding is a very costly disease. What support if any have you received from organisations and what would you like to see improved?

A: There is little to no support for the patient and MND is also not registered as a PMB with medical aids. So we have had to pay for absolutely all of Phillip’s homecare and we literally have an ICU setup at home. We have been blessed with friends who have stepped in to help fund some of Phillip’s machines. It’s an extremely lonely disease as very few people and medical professionals know or understand the challenges and pain a family endures living with MND. It would be wonderful to see the disease get the attention and respect it deserves through awareness thereby creating better support.

Q: What words of advice would you share with newly diagnosed families?

A: Love and depending on and trusting God are the two most important things to me, love conquers all and God never leaves you or forsakes you. None of us know why we have to endure this level of pain and loss but you need to find purpose in your pain. Phillip and I will continue advocating for all MND patients in SA and will help with anything within our means, I will always be available to help with care tips and training to try and make a difference.