Chairman's Message

Chairman's Message

Welcome one and all.  As I write I note it is 1st September and it is Spring, my favourite season.  However, as we approach 6 months of some form of COVID-19Mark K 2 lockdown/restrictions in Australia it has been an environment different to any we have experienced before.

As a person living with two auto-immune conditions, CIDP and Ulcerative Colitis, I am both immune supressed and immune modulated, self-isolating and working from home, like so many others.  Whilst I am generally extra cautious during the winter months to avoid people exhibiting cold and flu symptoms and I have a flu vaccination each year as early as possible, after clearance advice from my specialist, it has been extremely challenging to go out for just a short walk in nearby Parramatta Park and avoid others not reciprocating physical distancing nor wearing masks.

Why is that important?  Well, I cannot go to my gym and have been granted a hold on my membership until 31st December 2020, so I am missing a key segment of my CIDP/UC fitness strategy to stay as healthy as possible to provide a solid foundation to help see me through any flares in either condition. 

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Chair Message September 2020

on . Posted in About Us

Welcome one and all.  As I write I note it is 1st September and it is Spring, my favourite season.  However, as we approach 6 months of some form of COVID-19 lockdown/restrictions in Australia it has been an environment different to any we have experienced before.Mark K 2

As a person living with two auto-immune conditions, CIDP and Ulcerative Colitis, I am both immune supressed and immune modulated, self-isolating and working from home, like so many others.  Whilst I am generally extra cautious during the winter months to avoid people exhibiting cold and flu symptoms and I have a flu vaccination each year as early as possible, after clearance advice from my specialist, it has been extremely challenging to go out for just a short walk in nearby Parramatta Park and avoid others not reciprocating physical distancing nor wearing masks.

Why is that important?  Well, I cannot go to my gym and have been granted a hold on my membership until 31st December 2020, so I am missing a key segment of my CIDP/UC fitness strategy to stay as healthy as possible to provide a solid foundation to help see me through any flares in either condition.  My walks, light weight workouts, a strong focus on diet and well resting/sleeping should help ensure any lack of stability with either condition is identified and managed. However, as we know both GBS and CIDP are more often than not unpredictable but we learn as best we can to adapt and respond.

This neatly segues into how we learn to live with the constant threat of COVID-19 infection; not unlike we live with GBS/CIDP!  With a flawed immune system, there are many viruses and bacteria out there at any time that could become a threat and we must be ever vigilant to minimise our exposure.

As some of you may be aware, I am a member of a number of Local, State and Federal Government Committees related to access and inclusion and patient support.  All these committees have now moved online with both good and not so good results.

The good part is I can attend these meetings without increasing my potential exposure to infection from the comfort of my home office with no commute.  The bad aspect is I miss the actual physical meeting of fellow committee members, the friendly banter and often the chat over coffee or a meal before or after meetings.  I receive similar feedback from other committee members and whilst the online meetings allow us to move forward with our work, it is not quite the same as being physically there. 

This brings me to a question for everyone who receives Recovery; how are you managing your day to day activities under COVID-19 restrictions?  What are the challenges you experience and what are your strategies to work around them? We would greatly appreciate your feedback and thoughts; and indeed Ken, our Editor, is always seeking stories from our readers to tell us about your GBS/CIDP journey and/or how you manage under COVID-19 restrictions.

In closing, 2020 is our 30th anniversary year and it will indeed be signature year in the annals of human history.  However, due to COVID-19 we cannot hold a physical celebration but we do intend to mark the event during our November meeting.

Until next time, please stay safe.

Cheers

Mark.

uned.

In closing, some of you may be aware I am now one of two community representatives within NIGAC (National Immunoglobulin Governance Advisory Committee). Generally, the Committee seeks to develop improved strategies for the use of IVIG and in particular patient experiences, knowledge and self-management strategies.  I have participated in a number of online meetings with some patients with very rare conditions requiring IVIG treatment and health professionals across Australia.  Whilst it is only early days we hope to greatly improve the consultation and participation of patients, carers and support networks and develop a much better feedback loop placing the patient at the centre. All too often patients are left in an ongoing information vacuum and there are many reasons for that. We seek to remedy this.

Stay well and stay safe.

Cheers,

Mark.