Road to Recovery after a Relapse

Nicola: Welcome to episode four in the relapse series of podcasts. I'm Nicola Graham and today we're looking at the road to recovery after you've had a relapse. I'm joined today by MS Nurse Specialist Jodi Haartsen and Jodi's also our executive manager here at MSL and part of our team. So, if you're keen to know what happens next after your relapse, how can you best MS.

So, welcome to episode four, the road to recovery after a relapse. And I'm joined here today again with Jodi Haartsen. So Jodi, can you tell me after a person has had a relapse, how much recovery might they expect to have?

Jodi: Well, it really does depend on where the relapse was and what impacts it has as to how much recovery someone's going to be able to have.

The initial recovery really does happen in the first month. But really, even out to a year, people can slowly start to feel like they've got some gains, like they're doing better, and they've got some improvement happening. So, I kind of think your new normal really starts at that year time frame, and I'm still optimistic for people that they can keep making gains until that time. It's just that they'll be a lot slower.

Nicola: Okay, so most of the gain is in that first month?

Jodi: Yeah, four to six weeks, yeah.

Nicola: Okay, but you still might be making some gains and improvements up to a year?

Jodi: Yep, absolutely.

Nicola: Okay, that's good to know. So, as part of people's recovery, they're likely, or they may have some allied health practitioners involved, and what type of practitioners might they have? How can they help? How do we use their allied health?

Jodi: Yeah, I guess depending on where your relapse is and how much it's impacted you, there's lots of scope for engaging other services and allied health services. The most physiotherapy, of course, particularly if your relapse has impacted your walking, but one area where physio can be of huge value in recovery is what's called the vestibular function, which is balance and some MS relapses will affect someone's balance quite severely, which is really devastating for people and an ongoing physio can really help with that, but other areas might be impacted where you need to adjust things in your home or at work or how you do things and occupational therapy can be really valuable for that.

And then some people's, very rarely, but some people's speech and swallowing can be affected as well, too, so there's a whole range of different allied health services that can be useful for people as they recover.

Nicola: Okay. And what about returning to work? What advice do you give and what supports are available for people returning to work?

Jodi: Yeah, for someone who's had a mild relapse, you can return to work, you know, quite quickly, within a week you can be back at work. Most people took a fairly staggered approach to returning back to work.

In the last episode, we talked about the impact of some of the treatments on you as well too. So, factoring that in, many people need a couple of weeks before they can get back to work. Other people, it takes a long time to be able to be able to recover, as I said, you know, sometimes out to a year.

And so therefore at MSL, we do have an employment support service, which really can help people, get back into work and be able to adjust things in their workplace.

Nicola: Okay, great. And how do people get onto that service? The employment support service, how do they access it?

Jodi: So, all our services at MSL and we have some physios as well too, and OTs who can support people, and that's through our central intake line, which is MS Connect, and that's 1 800 042 138.

Nicola: I don't, I'm not sure whether we've covered this really, but how do our listeners find out about any aids and supports that might be useful for them?

Jodi: Yeah, that can be quite tricky. Often if you have had a significant relapse, most of the time that's treated in hospital.

So, there'll be a lot of advice and support given to people at that time when they're in hospital. If not, you might need to be a bit more resourceful. Through MS Connect, through our services is one way of being able to do that, but also other ways can include getting in touch with your local GP, a local physio, someone that you've known before.

So I've found people to be very resourceful, Nicola, in finding out what can be useful for them. Yeah, they can.

Nicola: If post-relapse you think that your driving is impaired, what are you legally and sensibly required to do?

Jodi: The most important thing, I think, is to be healthy, is that sensibility, um, because certainly as if steroids have really impacted you as well too, that can impair your level of judgment as well too.

So, our general advice, is always to err on the side of caution and to be as sensible as possible in how you do it and to have a really good conversation with your neurologist about what that means and what you should think about doing.

Nicola: All right, and post-relapse if our listeners need more help and if they're under NDIS, how do they access the NDIS?

Jodi: MSL has an Engagement team that can support people accessing the NDIS, so they can sort of guide them through it and in this the NDIS services for MS now have been around for a couple of years and so a lot of MS clinics are also really familiar with the processes and have nurses who can support people as well too.

So there's a number of ways that people also can, can get support in accessing the NDIS. I think it's important because the recovery can take some time to not jump in and think that this is your forever because it really doesn't, isn't necessarily your forever. So, you have more success applying for NDIS when you know, really sure what's going to be the outcomes for you.

Nicola: So Jodi, just to summarise, what would be your top tips for people post recovery? What would you advise?

Jodi: I think that probably my top tip is that the road to recovery is bumpy. You know, it's not going to be smooth, there'll be bad days. It's so common and sometimes there's no reason for those bad days either, but it's just recovery for an MS relapse can really, good days and bad days is something that I've heard so many times.

And I guess the other top tip is that resourcefulness, which is about doing what you can to build up the supports that you need for you. And everyone has a different approach to that. Some people, you know, use dietary modification, which is really important and really valuable to be able to build up their strength and build up their resilience.

Other people, a lot of people, need a bit of counselling and mental health support. Having a relapse can be a really significant thing in someone's life. There was many stories I've heard where people, it was actually the second relapse, where the diagnosis really hit them and so I think reaching out for that mental health support is another thing that's really incredibly valuable. As I said, it's getting your team around you that's going to be able to support you, being able to get back into exercise, do your work, be able to get back to the job that you that you were doing, or some, you know, some people choose to change their jobs so it can really shake up your life having a relapse.

Nicola: And I guess based on what you were just saying there, Jodi, our peer support service might be helpful for somebody having a relapse.

Jodi: Yeah, and during the recovery, I mean, there's nothing like talking to someone who knows exactly what that feels like, who knows what it feels like to have those bad days, who knows what it feels like to have the good days and to share that. So, finding that right connection with somebody can make such a huge difference. So our peer support services can be really valuable there.

Nicola: Beautiful. Thank you again, Jodi, for all your help and insight. Really appreciate it.

Jodi: Thank you.

Nicola: I hope you found the podcast useful and please if you'd like to access any services, get some more advice, seek some support, then please call our MS Connect number 1 800 042 138. Thanks for your time.