May 25, 2016 at 11:54 pm
Thank you for sharing your mom’s story and for the information on the book. Mine is coming in the mail soon. I hadn’t checked this site for a while and when I read my mom your email, she was again so happy and shocked that someone would write! It has been 5 months now since her diagnosis and I’m so happy to report that she is at finally at home. Her stay in the general rehab ward at the hospital came to a quick end when her team decided that future care for her would be better in a convalescent care facility or at home. We were very surprised that going home was even an option. They gave her a weekend pass and she was so thrilled to be in her own home. It was quite an ordeal setting her apartment up with the necessary equipment (sit-to-stand lift, hospital bed, wheelchair, commode, sliding board) but our Red Cross was wonderful and delivered everything and set it up. She has 5 home-care visits a day to help with her toilet needs, bathing and short tasks. This is all made available through our Canadian Healthcare. She has also started light physio. We have her outfitted with LifeLine (“I’ve fallen and I can’t get up…”) When she was in the hospital just a month ago, she couldn’t stand up or use her hands very well. Now she can stand, pivot and sit, brush her teeth, use utensils and manage the tv remote and phone. It has been a slow but steady progress for her and in her case, being in her own home has helped her emotionally. She’s so happy now and has learned to accept how GBS changed her life. When she accomplishes a new feat, she’s like a child who has just learned to ride a bike. It’s truly heart-warming. I have learned so much on this ride, as has my whole family. I may have to change the name from “Scared at 82″ to Thriving at 83”. It’s her birthday tomorrow and we’ll have so much to celebrate.
I hope your mother is also seeing some positive changes. How is she doing? She’s lucky to have you.
HeidiApril 5, 2016 at 11:37 pm
Thank you both for your stories and help. I have shared your messages with my mom and she was so relieved to know that there is hope. We have requested a neuro referral and will go from there. Tomorrow a team is taking my mom home to assess her ability to be on her own. This means she will have all the equipment and homecare help required to function at home with physio appointments nearby. The next day we are meeting with the hospital team to discuss everything and if they feel she is ready, we are going to appeal the decision. She’s not ready. She cannot hold a phone to call 911 if something happened. Keeping patients in hospital is big money and the urgency to get sick people discharged asap all boils down to saving money.
You are so right about GBS being uncommon, not rare. It amazes me how many people know someone who has had it.
Your advice is very much appreciated. Thank you for taking the time to write me.
We live just outside Vancouver, British Columbia.
HeidiMarch 31, 2016 at 1:19 am
Thanks Jim-LA. My mom had one week of IVIG and now she just gets Gabapentin and Tylenol 3 as needed. There just doesn’t seem to be any doctors who know enough about this. Tomorrow I’m going to ask for another Neuro consult. They want her out of the hospital and at home.