Sascha Gallardo – March 7, 2020
Polyneuropathy is often characterised by numbness, tingling sensation, burning pain and even paralysis of the hands and feet which can later on progress to the other parts of the body such as the arms and legs.
This condition can be either acute, which appears suddenly but resolves slowly, or chronic which progresses gradually.
It has different classifications such as the Guillain-barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and Charcot-Marie-Tooth (CMT).
Although these classifications have differences such as whether the condition was passed on genetically, an autoimmune disorder or the cause is unknown, these three have very similar symptoms and treatment procedures.
The Ben’s Friends Living with Polyneuropathy community is created to provide a safe and supportive online community for patients living with CIDP, GBS, and CMT.
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One of our members, John, shares his experience with CIDP and how helpful the Living with Polyneuropathy is in improving his condition.
John who is from Queensland, Australia is blessed to be married to a wonderful lady named Adrienne who he met at High School.
They have been married for forty-four years this year and have two adult children who have given them six grandchildren between them.
Here is John’s story.
1. Please introduce yourself and tell us a bit about your life.
I’m just a normal person, living a happy life in the suburbs and now retired having to leave work because of CIDP.
I was in banking and finance for nineteen years in New Zealand. I wound up designing PC based computer systems in the late ‘80s and early ‘90s before moving to Australia so that I could train to become a pastor in the Lutheran Church.
I served a congregation in South Australia and Queensland prior to becoming the Director of Ministry and Mission for Queensland.
2. Tell us your diagnosis story.
I went to bed one night perfectly healthy and awoke the following morning with numbness in my finger tips and toes. I was eventually hospitalised where a specialist doctor, Dr Careless, diagnosed CIDP after running a battery of tests including a lumbar puncture.
I was hospitalised for five days in total. However, since the diagnosis I wound up being admitted to hospital every four weeks where I receive Immunoglobulin (IG) Intravenously (IV). This takes about 4-5 hours.
I was fortunate with Dr. Careless as he appeared familiar with the condition. Interestingly however, when my GP retired, I was the only CIDP case he had encountered during his practise.
3. What has changed in your life because of your medical condition?
Everything has changed!
My limbs feel ‘leaden’ all the time and I struggle with the strength to stand for long periods of time or hand strength e.g. to remove tops off bottles or use work tools.
Some days are better than others, some days are really bad with nerve pain.
4. What’s the story about your joining this community?
Because of the relative rarity of the condition (I refuse to use the word ‘disease’), not much is known about it even by the medical community.
I believed I was not the only one who had this affliction and therefore looked around for information on it and ‘found’ the Ben’s Friends community now known as Living With Polyneuropathy but in a previous iteration, it was simply GBP/CIDP focused.
5. How has being a member changed you?
Simply seeing that there are others who share the same or a similar affliction and the various coping mechanisms or treatment methodologies that they have employed across the world has helped me a lot.
For instance, I came across SCIG (Subcutaneous Immunoglobulin) as opposed to IVIG (Intravenous Immunoglobulin). This is where an individual is able to self administer the IG by using subcutaneous (under the skin) needles. This option is not for everyone and to date I have not pursued it further as it still requires a visit to the hospital to secure the IG. But I had hoped that SCIG would potentially enable me to avoid a hospital visit entirely!
Also, I indeed learned from other group members that I was not alone or unique. Others have had this condition for longer than I have and simply ‘got on with life’. While it may seem strange, it is good not to be alone.
6. How has being a member changed your family?
My family provides amazing support to me and are my ‘sounding board’ for ideas that I come across on the group.
7. What could life have been like without this community?
Simply put, life without this community would be ‘lonely’.
While we, who are afflicted with this condition, are scattered across the world, the tyranny of distance, time and geographical locations are reduced to nothing by our screens and keyboards.
8. Is there anything you want to say to your fellow members and moderator/s in your community?
The wisdom exercised by moderators is to be applauded.
They ensure that this remains a ‘safe’ community while allowing freedom of expression – a delicate balance.
9. Is there anything you want to say to other people who have the same condition?
Simply put, “you are not alone” (apologies to ET! :-)).
There are other people in the world who can relate and empathise with your condition (and you don’t need to begin with explaining what the affliction is as we already know).
Any question or query is valid as each one of us is searching and reaching out to others for assistance.