Let me start by wishing all of you the very best for this season of goodwill. This year has been an exciting one for people living with MS and we have seen the arrival of a new drug Ocrevus which not only impacts relapsing remitting MS, but is the first drug to show a positive impact on primary progressive MS. Also the NDIS is steadily rolling out and though not all the news about the NDIS has been good we luckily have MSL to assist us in our negotiations with the NDI-Authority and I hope you are all speaking to MS Connect when you are preparing for the NDIS.
It has also been a good year for PwMS Vic because we held a very successful conference and spring seminar. But it has also been a sad year because our immediate past President, David Sullivan, died in January after an extended battle with cancer. David was one of the very first Ambassadors and was editor of this newsletter and then our President for four years. He was an inspiring friend and colleague showing how, regardless of disability, we can work for the benefit of people with MS and make a worthwhile contribution to society.
Important messages from our conference and our Spring Seminar included:
We must not leave it up to our medicos to look after our health; it is essential that we take some responsibility for looking after ourselves by having a health-plan; by not smoking; by getting some sun and checking our vitamin D; by eating healthily; managing other medical conditions; and exercising at least twice a week.
MSL provides services to assist people with MS get the best possible outcomes from the NDIS. It runs explanatory workshops in areas where the NDIS is being rolled out and provides tools to help us prepare and can provide advice and support during the negotiation of our package. It can also help us appeal if we think our package is inappropriate. And remember if you have an NDIS package MSL is registered to provide support coordination to help you manage it.
Many people with MS are concerned that the NDIS will not service people whose need for it develops after they are 65, when they will be dependent on the Aged Care system. We are pleased to hear that MSA is lobbying governments in the hope of improving this; and meanwhile MSL is developing a guide specifically designed to help people with MS navigate their approach to My Aged Care and to their entry to the scheme if they are eligible.
I am pleased to be able to tell you that we have a very impressive panel of speakers lined up for our 2018 annual conference which will be held at the Nerve Centre on Saturday May 5th; put the date in your diary now.
Finally, I hope you are prepared for the coming summer. Remember to protect yourself from the heat:
- If possible avoid being out in the heat of the day, use an umbrella and a hat to keep direct sun off you, and keep blinds and curtains closed during the heat of the day to avoid heating up the house.
- Keep well hydrated with cold non-caffeine drinks; wear light weight, loose clothing made of cotton and a cooling vest or a damp scarf.
- Cook outside on a BBQ or in an electric frying pan to avoid heating up the house.
Best Wishes for 2018 and may the New Year treat you kindly.
Nigel Caswell OAM - December 2017