010.3 Multiple Sclerosis Series Wrap up- Diagnosis - a podcast by Bron Webster - diagnosed 1996, mum with MS, expert MS patient and still mob

from 2020-06-02T06:00

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As we end the Diagnosis series what have we talked about?

the sheer Grit and resilience all my guests have shown

the length of time has taken to arrive at a diagnosis of Multiple Sclerosis and perseverance plus self belief required

thirdly the gradual realisation of the need to make changes in terms of working, in terms of lifestyle

All of these people are involved in doing things that are benefiting other people, yes they might be linked to their own circumstances but ultimately the benefits go much wider.

The tests that are involved in a diagnosis ... the waiting for results and the feeling this is all-encompassing. It is on your mind every single minute of every single day.

MRI scans and lumbar punctures are frequent.

what is coming next?

Moving onto the MS Lifestyle and tackling some of the various MS dietary recommendations.

I will be talking with people from The Wahls Protocol, The OMS Lifestyle, The Best Bet Diet amongst others in the next series.

TRANSCRIPT OF THIS EPISODE

Speaker 0:24
today I'm doing a series wrap up and a series starts. And this is going to be happening at the end of each series that I put together. We just finished the diagnosis series. We've listened to four people's diagnosis stories. We heard Jo Livermore, we heard from Grant Miller, Rachael Tomlinson, and also Holly Ford. Some have had MS for a long time, and others that have been living with symptoms for a long time. But weren't necessarily diagnosed at the time.

And then there's some others who have been diagnosed more recently broken with people that have had a diagnosis of relapsing remitting MS. And also people that have had progressive Ms.

So Jo Livermore, we heard from Jo about how she didn't take her symptoms seriously. She told us about her feelings while she was waiting to find out her diagnosis and how it consumed every waking minute for her. But she's adjusted to living with a diagnosis. She's come to realize the need to slow down. And she's also recognized that working from home has really benefited her during lockdown. Joe told us how she's now focusing on creating an active community in her local area, particularly for people who are out working Still during the day, but they're living with MS. And Jo herself is still working full time.

Then we heard from Grant Miller... Grants got a diagnosis of progressive S. But it all happened a long time ago and his first symptom was 40 years ago. He didn't put the pieces together until he saw something on TV about multiple sclerosis. And he then went and asked his neurologist who confirmed it to him, because at the time, there was no support available, there was no treatment available. And so it was a very, very different MS landscape. And in the podcast with Grant he's reflected on his disease progressing in terms of thinking about how he's required different walking aids along with his progression needs change. So I think what's what was interesting was when Grant said he was too proud and didn't want to accept he needed a wheelchair. But he came to the point where he borrowed a wheelchair for a weekend. And he realized how much it was helping his friends as well as himself, because his friends weren't having to hang around. So he transitioned to using a wheelchair much more. He's got a really positive outlook. And he thinks what has helped him to adjust is starting to use different mobility aids before he actually needed them. So I think with Grants disease and its progression, it's not been a rapid onset progression. So he has been able to start to use a stick or a wheelchair, before he knew he needed them. Then be able to deal with the transition. Grant also said about how much he's grown in confidence since he started to use a wheelchair and how he can just now strike a conversation with anybody. So he's got this really positive outlook, and he's now keeping himself occupied and motivated doing wheelchair marathons for charity. And I think it's amazing. So Grant's medically retired, but he does work voluntarily for a hospice charity.

Rachael Tomlinson has got a diagnosis of primary progressive Ms. But that came to her later in life because Rachel's 53 at the moment and was diagnosed in 2018. But this all started back in 2013. And she discovered from her medical notes that she had been diagnosed in 2013 But never told.

Speaker 5:02
And she used to have a really stressful job that involves lots of travelling and long hours. But the fatigue that came with the Multiple Sclerosis became such a massive problem added on to the cognitive problems that have really featured in Rachael's particular symptoms that she's just faced a barrage of frustration and recognizing that she needed to leave work and give up work has been something that she's grieved for. So she's coming to terms with not only using a job she's also had to stop swimming because of the difficulties and that she finds but what has been the biggest issue for Rachael is accessing rugby stable stadiums. Rachael's been involved in the rugby fraternity for the last 30 years and rugby is a huge part of rape. life so much though that come hell or high water. Rachel's going to go to her home games, and she's going to sit in the seat she's always sat in, even if it means that three and four other friends and supporters have got to carry her to a usual spot. So good on you, Rachel, and hope that campaigning was going to go well.

And then finally, we spoke with Holly Ford. And Holly is a young person with primary progressive Ms. And her diagnosis story shows the amount and level of frustration that she had to go through because she was 24 when she eventually got the diagnosis, but she'd had to go to her GP three times to be fobbed off. And then once the wheels of diagnosis started turning, she has three sets of MRIs and tests before she got the diagnosis. So she's coming to terms with (in quite a short space of time), adapting from being an active gym going person to someone who's using a wheelchair full time. But she keeps going in life by not sweating, the big stuff. She's campaigned for drugs, she went to Parliament to campaign to get some disease modifying drugs approved for use in progressive Ms. And the future is looking really positive. So what's apparent in all of the diagnosis stories are the following four areas. Firstly, the sheer grit and resilience that all my guests had show, to get a diagnosis to live with multiple sclerosis and to deal with change. Secondly, the length of time that it's taken to arrive at a diagnosis shows absolute perseverance and self belief to not just Given that the first knock back because they knew there was something going on with their body. Thirdly, a gradual realization of the need to make changes in terms of working in terms of lifestyle. And fourthly, all the people I've spoken with are involved in doing things that are benefiting other people. Yes, they might be linked to their own unique circumstances. But ultimately, the benefits are going much wider. And I think what it's clear to see is that when you've got a diagnosis of such an illness, you can still find purpose and still find a reason to keep going. So do listen again to these episodes, and I'll put the links to the individual ones in the show notes so you can go back and see the one that you want.

Speaker 9:03

Now, next month I'm moving on to Ms lifestyle.

I'm going to be covering different topics over the coming months. And in June I've got guests on some of the main recommended MS dietary regimes. Now right at the top, it's worth me letting you know that I've spent one year following the OMS lifestyle. So our vegan with fish but I'm allergic to shellfish and so I followed the dietary elements of Overcoming Multiple Sclerosis lifestyle. I've also spent another year following the Wahls protocol, which is many in many regards, a complete opposite because it's organ meats. And it's taken advantage of some of the nutrients that are in the awful that we often don't teat. So I just wanted to let you know that I've done those two things, I've now settled into a mixture of different dietary approaches. They seem to be working for me, I've cut out dairy, with one exception, because whatever adjustments I've made, chocolate remains a part of my life.

So with each of the regimes that we're going to be talking about, I've got a set of questions that will be coming out from the people that I'm talking with. So I'll just tell you what I'm looking at finding out the origin. So which country and what was the sort of basis for this regime coming to fruition? Is there any UK coverage, people that are doing it groups, support, et cetera, understanding the fundamentals of the approach and trying to unpick what makes it different to other MS, dietary lifestyles, I'm keen to understand any evidence-base for the recommendations. But also, maybe the anecdotal base because scientific evidence, double blind trials and everything else is not always easy to obtain. I've got no affiliations. I'm not here to make money and to push certain things your direction. So sometimes as we look at all the different elements of MS lifestyle, actually, anecdotal ideas are some things that we'll be talking about.

Coming back to the diet. So I'll also be wanting to understand how easy is it to adopt this lifestyle and what's the increased cost? So is it organic, only do you need to get supplements? And then finally, how many people typically do we think are involved in doing this? Particular lifestyle, and other in any communities and support that you can find. So, hopefully a very wide ranging view of the different dietary lifestyles that are out there that you might find and read and hear about. So that's going to be a great month in June. Keep tuning in and take away what's relevant and useful for you.

Thanks so much for listening to today's ms show.

Further episodes of The MS Show

Further podcasts by Bron Webster - diagnosed 1996, mum with MS, expert MS patient and still mob

Website of Bron Webster - diagnosed 1996, mum with MS, expert MS patient and still mob