Isolated Yet Resilient: Conquering GBS Amidst a Pandemic
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- Опубликовано: 30 июл 2024
- To learn more about GBS and CIDP, please go to:
www.gbscidp.ca/
/ gbs_cidpfoundationofca...
/ gbscidpcanada
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#guillainbarre
#guillainbarresyndrome
#gbsawareness
#livingwithgbs
#gbssupport
#gbsrecovery
#gbswarrior
#cidp
#invisibleillness
#autoimmunedisease
#IVIG
#ivigtherapy
#gbscidpfoundation
#gbscidpawareness
#peripheralneuropathy
Thank you for posting your story, and you're right, there isn't enough knowledge even for doctors who aren't neurologists. And for you starting your journey during the pandemic makes your story even more harrowing.
I was diagnosed 25 years ago with GBS and held on to residualsall these years later. Seven years ago I was diagnosed with CIDP. I'm now 74 and sick and tired of the pain. I live in the states.
At 63 I'm on a unpaid medical leave for over a year now suffering from Guillain-Barre syndrome, a rare disorder in which your body's immune system attacks your nerves. I have good days and really bad days too.
Never took any CERB and worked everyday during the pandemic. Although I WANT TO work I can't do fine motor skills with my hands, which has been difficult as I was a graphic designer working in the sign industry. Speech is difficult at times too. Fought my way walking and have good motor reflex in my legs and lower body, no real strength issues, just tire so damn fast.
I don't want pity, just some help working through the quagmire of getting financial assistance. Still I have to wait 120 days before this government will even look at long term disability, because seriously, who'd hire a 63 year old graphic designer/ production worker who can no longer perform the duties of a graphic designer/ production worker? ... where is the help!?!
Thanks to MP Brock's office at least someone is looking out for this Canadian.
Never,Never, Never Give up!
Hi - you have no idea how our lives parallel! My story is above, the 74 year old. The terror of GBS was more than just getting a final diagnosis - hearing those words it's going to get worse before getting better in itself was frightening.
I was a graphic designer as well. Couldn't get any financial aid because I had already made enough money in the year (in March '99) that surpassed the indigent level. I was a 49 year old divorced woman after 18 years of marriage, a son in college, and wondering what kind of future was in store for me. My company held my job open for me for 18 months, my bosses were angels on earth. They farmed out the work and set me up at home with equipment to work whenever possible. When I graduated to a walker from the wheelchair I began my compute of half days. I was with my company 18 years and in that time I met my new husband, now married 22 years.
I experienced so many relapes. In 2017 I got very sick and was hospitalized for an unrelated thing. At the same time I was unable to walk so after testing revealed I also had CIDP which is the chronic form of GBS (as if GBS wasn't chronic enough).
Good luck with getting back on your feet. Society is cruel to senior citizens, I was fortunate with support from my company, husband, family and friends.
60 year old print production and wide format specialist that can no longer do same. I too am frustrated with how difficult it has become to finance my recovery on the provincial PWD monthly benefit and so on. Thank you Bob., for sharing. My experience mirrors yours story. iamdougf from VanBC
Sorry 😐 🤲🙏 my sister has been having this until this day 😭😭