GBS education session: GBS & IVIG treatments
I received an email from my coworker Natasha who had helped organize the Walk & Roll for GBS in May 2018. It was an email from Kim Lange, Alberta director from the GBS/CIDP foundation inviting me to a GBS afternoon education session on the topic of GBS/CIDP and IVIG Treatments. As my recovery has been slow (2 years+ now), was interesting to hear more about IVIG treatments and how it connects with my recovery. My attendee for this event was a close family friend Marilyn Shoults (one of my second moms and one of the best cheerleader to have in one’s corner.
We arrived at Mount Royal University for the event and faced our first obstacle - the doors were not wide enough for my wheelchair to fit through. As I remained on the bus while Marilyn confirmed the door size, my Access Calgary driver kindly went to the next drop off area where we found success! Then it was the elevator - no problem on the width but was the depth of the elevator that was an issue. Marilyn did some manoeuvring but we found success again so we could arrive to the conference room. There were about 25 people at this session. Saw one person with a cane; another using 2 hiking sticks and myself in the wheelchair but everyone else were caregivers or GBS survivors that have recovered and could walk.
The first part of the afternoon I actually felt frustrated and defeated as everyone seems to have been taking the IVIG treatments for like 2 years. So feeling I slipped through the cracks in my treatments; therefore that’s why I could be recovering slowly compared to others. A speaker from the Canadian Blood Services spoke on how IVIG (blood products which help regenerate the myelin sheath of the nerves). So I question should I have had the plasmaphresis, which helps regenerates the myelin sheath of the nerves. Luckily the sessions after the coffee break helped change my feelings to more hope and positivity.
The speaker was Dr. Chris White, a neuromuscular physician from Calgary’s South Health Campus. His presentation was informative. Within the GBS family there are other subsequent conditions, one being CIDP (chronic inflammatory demyelination polyneuropathy) and each are treated differently on how much IVIG is given and how long it is given. So for GBS, it is given over a 5 day period and each amount given is based on the patient’s weight. In comparison, for CIDP, the IVIG treatments can be given over a longer period of time, such as 2 years. At the end he asked if there were any questions, so I asked Marilyn to put up her hand for me. Guess I said it too softly and didn’t hear me; so I in my loud voice spoke up saying I had a question but I couldn’t put up my hand. We all had a good chuckle. After that session my feelings of frustration and defeat, change to satisfaction knowing I was treated correctly by receiving my IVIG within days of admission in September 2016.
At my table I got speak more with another GBS survivor, Dean, who I first met at my walk. Unbelievably he was out of the hospital just a couple of weeks before my walk. He was fully paralyzed and had spent time in the ICU too. Gave me hope that one day I will recover to walk again.
Also met a gentleman from Red Deer who had one of the forms of GBS. Interesting hearing both of
their stories of recovery and journey with GBS.
Kim Lange gave me the opportunity to speak to Dr. Chris White at the end of the day. First impression - he is quite passionate about his field of Neuromuscular science. I shared my story with him. Agreed definitely GBS, but see I am still in the recovery phase but will need to be patient due to my severity my recovery will be longer. He asked for a piece of paper and he wrote a note then gave it to Marilyn for safe keeping until we got back to Skypointe. He told us to give the note to my GP. Before we left for the day, when I shared my story I mentioned that a new symptom I had post-GBS diagnosis was a numbness in my lower jaw, similar to what it feels like after getting freezing done at
the dentist office. He confirmed my feeling and said he could see the paralysis as well as hear it my
speech. Dr. White pointed out that I am still recovering, it is just taking longer to recover. Will need to be patient and agreed I should be followed by a neurologist too
So when I started my afternoon as frustrated and feeling defeated, end with encouragement and hope. Happy things came together so that Marilyn and myself were able to attend this education session. When I was back at Skypointe, I read the note. Here was a message that my doctor and I should consider a referral to the Neuromuscular Rehabilitation Clinic at SHC. Of course, we quickly did that and now we are waiting to be given an assessment date. Hoping it is sooner than later.
We arrived at Mount Royal University for the event and faced our first obstacle - the doors were not wide enough for my wheelchair to fit through. As I remained on the bus while Marilyn confirmed the door size, my Access Calgary driver kindly went to the next drop off area where we found success! Then it was the elevator - no problem on the width but was the depth of the elevator that was an issue. Marilyn did some manoeuvring but we found success again so we could arrive to the conference room. There were about 25 people at this session. Saw one person with a cane; another using 2 hiking sticks and myself in the wheelchair but everyone else were caregivers or GBS survivors that have recovered and could walk.
The first part of the afternoon I actually felt frustrated and defeated as everyone seems to have been taking the IVIG treatments for like 2 years. So feeling I slipped through the cracks in my treatments; therefore that’s why I could be recovering slowly compared to others. A speaker from the Canadian Blood Services spoke on how IVIG (blood products which help regenerate the myelin sheath of the nerves). So I question should I have had the plasmaphresis, which helps regenerates the myelin sheath of the nerves. Luckily the sessions after the coffee break helped change my feelings to more hope and positivity.
The speaker was Dr. Chris White, a neuromuscular physician from Calgary’s South Health Campus. His presentation was informative. Within the GBS family there are other subsequent conditions, one being CIDP (chronic inflammatory demyelination polyneuropathy) and each are treated differently on how much IVIG is given and how long it is given. So for GBS, it is given over a 5 day period and each amount given is based on the patient’s weight. In comparison, for CIDP, the IVIG treatments can be given over a longer period of time, such as 2 years. At the end he asked if there were any questions, so I asked Marilyn to put up her hand for me. Guess I said it too softly and didn’t hear me; so I in my loud voice spoke up saying I had a question but I couldn’t put up my hand. We all had a good chuckle. After that session my feelings of frustration and defeat, change to satisfaction knowing I was treated correctly by receiving my IVIG within days of admission in September 2016.
At my table I got speak more with another GBS survivor, Dean, who I first met at my walk. Unbelievably he was out of the hospital just a couple of weeks before my walk. He was fully paralyzed and had spent time in the ICU too. Gave me hope that one day I will recover to walk again.
Also met a gentleman from Red Deer who had one of the forms of GBS. Interesting hearing both of
their stories of recovery and journey with GBS.
Kim Lange gave me the opportunity to speak to Dr. Chris White at the end of the day. First impression - he is quite passionate about his field of Neuromuscular science. I shared my story with him. Agreed definitely GBS, but see I am still in the recovery phase but will need to be patient due to my severity my recovery will be longer. He asked for a piece of paper and he wrote a note then gave it to Marilyn for safe keeping until we got back to Skypointe. He told us to give the note to my GP. Before we left for the day, when I shared my story I mentioned that a new symptom I had post-GBS diagnosis was a numbness in my lower jaw, similar to what it feels like after getting freezing done at
the dentist office. He confirmed my feeling and said he could see the paralysis as well as hear it my
speech. Dr. White pointed out that I am still recovering, it is just taking longer to recover. Will need to be patient and agreed I should be followed by a neurologist too
So when I started my afternoon as frustrated and feeling defeated, end with encouragement and hope. Happy things came together so that Marilyn and myself were able to attend this education session. When I was back at Skypointe, I read the note. Here was a message that my doctor and I should consider a referral to the Neuromuscular Rehabilitation Clinic at SHC. Of course, we quickly did that and now we are waiting to be given an assessment date. Hoping it is sooner than later.
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