My husband Ratna was a healthy, strong, energetic and adventurous individual. It was a big shock to me and the children when he was diagnosed with MND. I was sad and afraid to think of the future, it seemed my whole world had come crashing down. With tears running down, I went to the one place I could run to - my Lord and Savior Jesus Christ.
The first thing we did was to regroup as a family, to have an open and honest conversation regarding the diagnosis and the journey. This was indeed comforting as we were on the same page on being there for each other in support, be positive and focused.
I believe:
- The sooner we come to terms with the different lifestyle we now will need to lead is beneficial!
- To take one day at a time, to be flexible as planning ahead does not work because every day is different.
- making adjustments and changes to my routines and priorities was helpful.
- Finally, not to focus on ‘fear’ but on the good things in life - family, friends and community.
As I have mentioned, I’m a Christian and follower of Jesus. He is my place of strength and refuge. My faith in Jesus gives me perspective in life: each day is a gift from Him and its mine to use it wisely and help others. Looking outward and not inward-focussed.
- Our friends here in Canberra and Melbourne call us and visit us regularly, bringing meals and having fun as we have known each other for more than 30yrs.
- Our children and grand children visit us regularly encouraging us in many ways, taking me for massages and movies too. Grand children and grand pet bring us joy and laughter.
- Church community and others too journey with us on this uphill road. Always ready to give us a hand in whatever way is needed and most of all praying for us.
We’re blessed to have the support that my husband and I receive from MND NSW, ACT and NSW Health services to navigate us through this health challenge.
The MND Multi-disciplinary clinic supports us, with the following services:
MNS NSW Coordinator, Neurologist, Social worker, Occupational therapist, Nutritionist, Speech Therapist, Physio Therapist, Palliative care doctor and nurses and aged care support workers. I do have to mention our respiratory specialist at the Canberra Health Services who has worked with Ratna with his breathing difficulty.
Everyone has given us their full attention and gone over and above their duty of care.
