Q&A | MS Central Coast

I am newly diagnosed, where can I get more information about MS?

You can get some great information here

I have MS, what supports and services is there?

There is a lot of support avenues for you to turn to. There is a lot of information on MS Plus website and there are many local support groups that can be so beneficial in just knowing you're not alone and there are people who understand what you're going through. Keep reading below because there is heaps of useful information that may help you.

If I go to the movies or the zoo for example, and I need help with a carer, do I have to pay for their entry?

Yes. Unless you have a companion card. The NSW Companion Card program is for people with significant and permanent disability who have a lifelong need for a high level of care to participate in community events and activities. The Companion Card allows a person’s carer free entry into participating venues and events. To check your eligibility click here

I have bladder and bowel urgency and I get very anxious when I am out and about. Is there anything you can suggest?

You can find online support to help you find the closest toilet for your needs. You can also download the app to your phone

For apple devices, you can download and install the app here or for android you can download and install here

Some of the disabled public toilets are locked. How can I access them?

You can get access to a key by ordering one online simply with a letter from your GP or a copy or your Disability parking permit. It’s such a great peace of mind to know that you can access one of those locked toilets at anytime. Whether its for bladder urgency or even changing, this MLAK key can make your life so much easier. Read more

I have issues self-regulating my temperature with my MS?

Did you know you can apply for a Medical Energy Rebate to help towards the running costs of using your air conditioner. You can get more information here

Depending on your financial status, you may also be eligible for a low income household rebate.

If you also use medical equipment such as a CPAP machine, you may be eligible for a life support energy rebate

I don’t have an air conditioner to help my regulate my temperature, are there any financial supports out there?

There certainly are so don’t feel you’re on your own. MS Plus have a Financial Assistance Program which can help assist you in getting an air conditioner. Please also note that assistance is depending on funds available at the time. Either way, you’re not alone. Please contact our Branch President regarding this Finance Assistance Program Form ccmsb.president@gmail.com

Sometimes I find it hard explaining my disability, is there anything that I can show people so they understand why I am having difficulties?

Yes, you can contact MS Plus or apply online for a MS Photo Card. You can find more information here

Do I need to inform Service NSW that I have been diagnosed with MS?

Yes. You do need to notify Service NSW of your medical diagnosis. MS symptoms may affect your driving. Service NSW will more than likely give you forms to apply for a fitness to drive assessment. You will need to book an appointment with your GP or Specialist to fill out the forms. It is important that you notify this because in the event of an accident, it may affect your medical cover that you may otherwise be entitled to and it really isn’t worth it. You can find more information in these links;

There is great brochure f rom MS Plus providing a lot of information for Practical, everyday advice Driving and Multiple Sclerosis

Sometimes my MS affects my legs or I get really fatigued, can I use disabled parking?

Absolutely yes, If you have a valid Disability Parking Permit. Do not use these parking spots if you do not. You can check your eligibility and apply clicking here

There have been some recent updates regarding parking time so please makes sure you keep up to date with the current rules regarding disability parking here

Did you also know that you can use your disability parking permit in many overseas countries. Always check to see what the rules and restrictions may be at your destination.

Another fun fact about traveling overseas, did you know about the Reciprocal Health Care Agreements with 11 countries that covers the cost of medically necessary care when Australians visit certain countries and visitors from these countries visit Australia. You can read more about that here

I am currently working and finding I am having a few struggles. Is there any support available for me?

Yes, MS Plus have a great network of support and information available to you. You can find loads of information on their website

There is also some financial assistance called Mobility Allowance that may help. To check your eligibility, click here

When I am having a flare and I cant drive is there any assistance available to me?

If you are with the NDIS or MY Aged Care, you can request social support to help get you to meetings, appointments, shopping or to even have a coffee with friends. If those services are not available to you, you may be able to get half price taxi fares. People with severe or permanent disabilities may be eligible for half price Taxi fares. For more information click here or contact Service NSW 13 77 88

I am finding it hard to navigate the NDIS. How do I get access to the NDIS?

Trust me, you’re not alone. Many people find it hard to steer. And, can be even harder to get approved. Best advice I can give is answer questions as if it was your worst day and do not give up. You can get advocacy help with MS Plus here

Also, we can refer you to Donna Langdon. She has assisted many people with MS to be able to get their applications approved and she has also assisted so many with getting the addition items and funding they require. For information on how to apply for the NDIS click here

If you have applied and have been rejected you can lodge an appeal here

I am over 65 years of age, what supports may I be entitled to?

You may be eligible for My Aged Care. To check if you are entitled for My Aged Care click here. You maybe able to get a funding package or have community supplemented supports. There is various assistance you may be able to get such as assisted technology, meals on wheels, social support, domestic assistance, and allied services. You can even request access to respite if anything changes and you need further temporary accommodation.

Make sure when you have your assessment, you answer relevant questions as if it was your worst day. I highly recommend having a trusted family member or friend with you.

NDIS and MyAgedCare support and services get a lot of mentions, but, what if I am not yet eligible for either? What help is out there for me?

EnableNSW has partnered with the NSW Ministry of Health to implement a home modification program as part of its Safe and Supported at Home (SASH) initiative. Some of the modifications may include minor home modifications or temporary solutions such as grab rails, ramps to access the home, doorway widening, shower hob reduction and/or portable/modular facilities, and/or major home modifications may be considered in some circumstances, for example wheelchair accessible bathroom modifications. The program currently has allocated funding until June 2024 and may change dependent upon demand and available budget. You will still need to meet the eligibility requirements. For further information regarding this scheme, please visit https://www.enable.health.nsw.gov.au/services/home-modifications-sash

To continue learning more about this please click here

What tips can you share about shopping in our local area and making it easier to navigate services available?

There are a few tips to combat the shops. Erina Fair have free mobility scooter or wheelchair hire and they are located just outside of Rebel Sports, where Target used to be. There is no shame in utilising these free scooters and if you haven’t used one before, it may surprise you just how liberating it can feel to be able to enjoy shopping and browsing without the stress of falling over or over doing it. Click here to get more information

Did you know that Qantas has a Carers Card that allows you to travel with special benefits and discounts for not for not only yourself, but your carer?

Qantas has a Carers Card that allows you to travel with special benefits and discounts for not only yourself, but your carer as well! To be eligible, you must hold a current Carer Concession photo identification card issued by People with Disability Australia (PWDA). To find out more click here

Do you pay to see your Neurologist, or find it hard to find the money to see one?

Having MS can be debilitating alone with various symptoms and associated pain with it. Not everyone is able to work, and the rising cost of living is hurting everyone’s hip pocket. Neurology appointments can really sting price wise. Did you know that there are Neurologists at the Central Coast Specialist Rooms that bulk bill when you are referred to them. Click here to learn more

Is there any helpful tips to help me plan ahead for accessibility?

Google maps has an accessible feature in the settings that can give you information on places you may want to visit, to make sure they are accessible for you and your requirements. How correct the information shared is another story so it may be a good idea to call ahead to double check the details are accurate.

There is a helpful tutorial video to walk you through it. Click this link to start watching.

Have you planned your care needs should you require more specialised care?

It is not always the most comfortable subject to discuss, but as we all know, MS can be a very unpredictable beast. It is so important to have your wishes heard, and to make it formal, so should anything happen where you aren’t at capacity to make decisions for yourself, then your wishes regarding your care plan must be actioned. To read more click here

We're in this together, nobody fights MS alone