The FND Podcast

To follow this Amazing creative FNDer here are her handles:

instagram: @naught_3, @eliciatate

tiktok: naught_3

HELPFUL RESOURCES:
A website all things Functional neurological Disorder written by Professor Jon Stone who is the leading FND researcher and Consultant Neurologist in Edinburgh, Scotland.

https://www.neurosymptoms.org/

FND ORGANISATIONS:

https://www.fndaus.org.au/

FND AUSTRALIA SUPPORT SERVICES INC: A wonderful resource for people in Australia with FND: from reasearch into FND, finding medical specialists and services and just information about FND. Solely dedicated to all things FND and helping those with FND in Australia.

https://fndaus.org.au/

FND Action: FND Action is a patient-led charity who offer a caring and supporting hand to people living with Functional Neurological Disorder (FND) in the UK. FND Action provide support to those diagnosed and their caregivers by hosting online support groups, an informative website and actively advocating for the cause.

https://www.fndaction.org.uk/
FND Dimensions aims to develop a network of ‘peer support groups’ across the UK either in face to face meetings or online via methods such as Skype. By bringing people together on a regular basis, this helps alleviate the isolation that many FND patients feel. It also gives opportunity for others to open up dialog and to talk to others in a similar position about the day to day challenges, issues or concerns with one another.

http://fnddimensions.org/

The Red Cross offers a service which calls people on a daily basis to ensure they are okay every day; if the call isn’t answered Red Cross will take action to make sure you’re okay. This can be a temporary service too. It’s called Telecross

https://www.redcross.org.au/get-help/community-services/telecross

Personal mobile alarms are another good way to keep safe. When you have emergency you activate the alarm it contacts your emergency contacts and nowadays even alerts your whereabouts and sometimes emergency services.

https://livelifealarms.com.au/product/order-4GX-mobile-alarm/?gclid=CjwKCAjw7J6EBhBDEiwA5UUM2gNGpIXnLEIKLzeAGP952PCulrf8HmRCJIgCkCC5ukPyZ68SsyH_lxoCjEkQAvD_BwE

smartphones with fall detection features also are much like personal Mobile alarms :

https://www.medicalalertadvice.com/articles/apple-watch-fall-detection/
For those with Telstra: priority assist is available for you if it is necessary that you have an available phone line 24/7 and you have a medical condition

https://www.telstra.com.au/support/category/home-phone/plans-rates/priority-assistance-for-telstra-customers

and last but not least there are laughter groups! We will be hearing more from Deb how it went however if you’re keen to find out where one is in your area . Apparently good for your mind and emotionally aswell. There is such a thing as laughter yoga.

https://www.meetup.com/en-AU/topics/laughter-club/

HELPFUL RESOURCES:

A website all things Functional neurological Disorder written by Professor Jon Stone who is the leading FND researcher and Consultant Neurologist in Edinburgh, Scotland.

www.neurosymptoms.org

Youtube video: What is Functional Neurological Condition By Dr. Phil Parker. A great thorough explanation of FND and the updates of FND.

FND ORGANISATIONS:

FND AUSTRALIA SUPPORT SERVICES INC: A wonderful resource for people in Australia with FND: from reasearch into FND, finding medical specialists and services and just information about FND. Solely dedicated to all things FND and helping those with FND in Australia.

https://fndaus.org.au/

FND Action: FND Action is a patient-led charity who offer a caring and supporting hand to people living with Functional Neurological Disorder (FND) in the UK. FND Action provide support to those diagnosed and their caregivers by hosting online support groups, an informative website and actively advocating for the cause.

https://www.fndaction.org.uk/
FND Dimensions aims to develop a network of ‘peer support groups’ across the UK either in face to face meetings or online via methods such as Skype. By bringing people together on a regular basis, this helps alleviate the isolation that many FND patients feel. It also gives opportunity for others to open up dialog and to talk to others in a similar position about the day to day challenges, issues or concerns with one another.

http://fnddimensions.org/

A really helpful article and explanation of what FND is: '

https://threadreaderapp.com/thread/1367576277956370432.html?fbclid=IwAR1GZpXe7IgC9qVlIr7ygA9RslPy6nxhQIumdUw9XMu2fs8MsMf8SwYZeVQ

if you are interested in FND Merchandise to support FND Australia support services by Friends of FND

https://imprintmerch.com.au/collections/lets-have-the-chat

To Purchase FND Shirts Hoodies and Bags go to website :

https://imprintmerch.com.au/collections/lets-have-the-chat

Proceeds go to FND Australia support services.

HELPFUL RESOURCES:
A website all things Functional neurological Disorder written by Professor Jon Stone who is the leading FND researcher and Consultant Neurologist in Edinburgh, Scotland.

https://www.neurosymptoms.org/

FND ORGANISATIONS:

FND AUSTRALIA SUPPORT SERVICES INC: A wonderful resource for people in Australia with FND: from reasearch into FND, finding medical specialists and services and just information about FND. Solely dedicated to all things FND and helping those with FND in Australia.

https://fndaus.org.au/

FND Action: FND Action is a patient-led charity who offer a caring and supporting hand to people living with Functional Neurological Disorder (FND) in the UK. FND Action provide support to those diagnosed and their caregivers by hosting online support groups, an informative website and actively advocating for the cause.

https://www.fndaction.org.uk/
FND Dimensions aims to develop a network of ‘peer support groups’ across the UK either in face to face meetings or online via methods such as Skype. By bringing people together on a regular basis, this helps alleviate the isolation that many FND patients feel. It also gives opportunity for others to open up dialog and to talk to others in a similar position about the day to day challenges, issues or concerns with one another.

http://fnddimensions.org/

A really helpful article and explanation of what FND is: '

https://threadreaderapp.com/thread/1367576277956370432.html?fbclid=IwAR1GZpXe7IgC9qVlIr7ygA9RslPy6nxhQIumdUw9XMu2fs8MsMf8SwYZeVQ

To access the episode that we talked about Leannes My FND reality please click on this link

https://thefndpodcast.simplecast.com/episodes/my-fnd-reality-talking-to-leanne

If you are experiencing feelings of depression hopelessness pain, if you notice changes in your sleep or eating and thoughts , if you notice a change in the usual activities that you are interested in or usually do or have thoughts of suicide please talk to someone , notify your gp, your medical team let someone know. Reach out to someone.

In Australia:

Lifeline: 13 11 14

www.lifeline.org.au

Beyond blue: 1300 22 4636

www.beyondblue.org.au

Headspace

www.headspace.org.au

Immediate danger : 000

HELPFUL RESOURCES:

A website all things Functional neurological Disorder written by Professor Jon Stone who is the leading FND researcher and Consultant Neurologist in Edinburgh, Scotland.

www.neurosymptoms.org

Youtube video: What is Functional Neurological Condition By Dr. Phil Parker. A great thorough explanation of FND and the updates of FND.

FND ORGANISATIONS:

FND AUSTRALIA SUPPORT SERVICES INC: A wonderful resource for people in Australia with FND: from reasearch into FND, finding medical specialists and services and just information about FND. Solely dedicated to all things FND and helping those with FND in Australia.

https://fndaus.org.au/

FND Action: FND Action is a patient-led charity who offer a caring and supporting hand to people living with Functional Neurological Disorder (FND) in the UK. FND Action provide support to those diagnosed and their caregivers by hosting online support groups, an informative website and actively advocating for the cause.

https://www.fndaction.org.uk/
FND Dimensions aims to develop a network of ‘peer support groups’ across the UK either in face to face meetings or online via methods such as Skype. By bringing people together on a regular basis, this helps alleviate the isolation that many FND patients feel. It also gives opportunity for others to open up dialog and to talk to others in a similar position about the day to day challenges, issues or concerns with one another.

http://fnddimensions.org/

A really helpful article and explanation of what FND is: '

https://threadreaderapp.com/thread/1367576277956370432.html?fbclid=IwAR1GZpXe7IgC9qVlIr7ygA9RslPy6nxhQIumdUw9XMu2fs8MsMf8SwYZeVQ

if you are interested in FND Merchandise to support FND Australia support services by Friends of FND

https://imprintmerch.com.au/collections/lets-have-the-chat

FND awareness day 2022 #voices4FND we talk on the Panel to discuss what we don’t usually talk about amoungst ourselves. How does the hormones affect us? Peri menopause , Menopause in general? Chrissie Deb Jess and myself explore this topic in depth. Follow Jess @functionallyjess Chrissie @Chrissiejbutler Thankyou all of you for participating and Maggie hopefully you’ll join in the next panel so we can hear your views too

Articles/links to check out:

Eostrogen levels and the Central Nervous System:

https://academic.oup.com/edrv/article/20/3/279/2530824

Shaping of the Female Human Brain by Sex HormonesnA Review

https://www.karger.com/Article/FullText/507083

Sec Hormones and the Brain

https://www.dana.org/article/hormones/

The Role of the Menstrul Cycle in Chronic disorders in the Central Nervous System

https://link.springer.com/chapter/10.1007/978-1-4757-2576-6_4

What other FNDers have mentioned about this :

“I have noticed I have more symptoms and seizures when I'm due on my period”

“I actually mentioned to Chrissie the other day that I actually got diagnose with FND and Early Menopause at the same time during this year. I get fatigued easier and a lot of hot flushes. For me. I have loss of periods and can affect my moods. I guess and definitely my sleeping patterns have gotten worse. Not much sleep. And I'm 33.”

“Yes every month when my hormones fluctuate I have a flare just before or while I am on my period. I want to chat to my doctor about options, but I don’t know if a hysterectomy or I think it’s called a Oblation? Would even help. Would love to know if they would.”

“My symptoms are worse during my period but I also am a lot more tired during that time and tiredness seems to be my main exacerbated”

“I’m actually slated for a hysterectomy to help with this. My cycle has always been awful but my FND occurred shortly after going through a few rounds of IVF. Hormones are definitely linked.”

“@thefndpodcast great topic! It’s actually more complex than just hormones, due to the relationship and influences of these chemicals in our emotions mental processes and our bodies physiology. Hormones can also be influences by our environment and our genetics. I would be happy to discuss this in detail during our next community conversation or in your podcast: MD Functional Disorder healing ally”

“This is a great post and interestingly I had this conversation in rehab. I went into surgical menopause5 years ago. Since I’ve had FND it’s been hard to figure out if the increase in “hot flashes” is hormone related. I only need oestrogen and after speaking with Gina Team it was suggested my HRT be increased. I’ve had the increase for a few weeks now and have noticed a difference. However, I have also had new medications started for some of my FND symptoms. I would suggest if someone isn’t sure to get a blood test done to check hormone levels - be interesting to see the outcome”

“My FND symptoms increase 2-3 days before auntie flow visits. My fatigue is the worst. Usually the day is a bit of a write off. Just can’t concentrate on anything”

“Since really young I’ve always had a drop attack (and seizures when older and experiencing more FNDy things) around my periods. I knew it wasn’t always just because of the pain ( From good ol Ends). I was in but the change in hormones affecting my nervous system. Makes total sense and I’m really looking forward to this discussion.”

“I was just talking to a fellow FNDer about how bad my symptoms were the other day. The worst side I went in for treatment in May. I go my period later that day. Usually I have a huge increase in fatigue as well so that usually tips me off but this time I didn’t notice the fatigue as much”

“Feel like I've been hit by a bus every period these past few months, they were bad enough before but I feel like exhausted with them now”

“I unfortunately have a flare up every month. It usually starts around 3-5 days before my period begins and can sometimes last up to a week from then to calm down. It is very difficult to cope with it happening every month. If anyone has any suggestions to help, that would be great! I have considered an implant but haven’t found enough information to know how helpful it would be. “

“I have the implant in. I’ll be honest I never put two and two together. But now I have the implant in my periods are a hit and miss. i’ve not had one since June when I had it put in but maybe this is something I can track and let you guys know”

“I’ve noticed a massive difference when I”m due my monthly all my symptoms are so much worse. I wasn’t like talk...