How Can We Help
AnonymousDecember 12, 2007 at 11:43 pm
Brady in Phoenix is our neighbor and very special child in our lives. We feel so helpless right now and want to do anything we can to help. I would like to know as parents what are the things that helped you the most? What made a difference no matter how small? I know there are things we can do for his parents that we are not thinking of and most likely they do not even realize would make a difference. I would appreciate any advise.
AnonymousDecember 13, 2007 at 10:07 am
Kabrde13 What a great neighbor you are to research this illness to better understand. GBS also means Getting Better Slowly, so it is going to take some time for things to return to a better situation. Right now the parents are trying to just digest all that has happened. They are on high alert and have fears, worries beyond our imaginations. They are dealing with this day to day. I am sure they have many questions. As a caregiver they will have to be dealing with the big change in their routines, being organized so they can spend more time with the child and his needs. Having all this dealt to them quickly. Give them support. Volunteer your services and call on them as often as you did before. Things for them is not normal and right now they need to take their minds off of the illness and worry and have some normal routine in their lives. When it is a child there is one parent that will be the caregiver more than the other spouse. Let them know you are there for them if they need a break to get their hair cut or shopping done or even packages wrapped. If you are making a trip to the post office ask them if they need stamps or something mailed. If you are going to the pharmacy ask if they need anything from there. For the most part they will say no but as this illness goes on they will realize they need extra help. It might mean baby sitting while they go to a doctors appointment or taking a book back to the library. The child is going to suffer from fatigue and need to sleep alot….the parent is going to also need their rest. Mentally they are going to be exhausted. For now just step back and watch for times they need help. Each day is different. There will be lots of visits to doctors and rehab if needed….even offering to drive them to these visits might just be a nice change in the caregivers routine and give you the chance to help out. What they don’t need is for all their friends to move away from them. They need their Circle of Support to be there just not at the beginning but years from now too. After two years my neighbor calles me at the beginning of the week and finds out what my plans are and if we can combine a day out and visit with each other. Have lunch or sit with each other to just talk. I ask her to go with me sometimes and she and her sister ask me to join them sometimes. Just knowing she is there has really helped me alot, if it is only some one to talk to. Be yourself, this is an illness that effects family and friends and a wide circle of people that know the person with GBS and most of them don’t really understand the illness. Coming here to share your experiences will not only help you get more ideas but also help others in the future. Welcome to our family!
December 13, 2007 at 11:06 am
My son is ten, so I can relate to Brady’s family. The biggest obstacle I faced was explainig things to people, again and again. Maybe you could ask if you could ask them to compile a list of what is wrong with Brady and what they would like others to know, and then maybe you could tell other neighbors for them. If your children go to school with Brady, maybe they could eventually bring work home NEVER, NEVER, say he looks so normal. That was the most hurtful thing to me. It was as if he was not sick and we were faking it just because we look normal.
Depending on the condition when he comes home, they may need alot of help or maybe none. Are there other siblings? Driving the other siblings to their activities would be helpful.
Most importantly, make sure they want help. I wanted certain people to help, but others were more of a pain and downer (my mom in particular)
After he gets home, months down the road, periodically bring him little pick me up things, a candy bar whatever, it is not the size of the present, just that you care. That is so important to my son, and he DOES remember who takes the time to care. It means everything on really sad days. If you would want to talk, pm me and I can call you.
Dawn Kevies mom
AnonymousDecember 13, 2007 at 11:20 am
Hi, my daughter had GBS in Feb 07; she is doing really well now, but it was a long recovery. We had some neighbors who periodically dropped off meals for us. (once we were home from the hospital, that is).
So when Brady is home, that would be a great support to his family. It sometimes just felt overwhelming trying to do everything, especially the first few months at home which were full of uncertainty re: prognosis.
I agree with Dawn that offering to call people with updates and also to explain the condition itself, would be very helpful if the parents want help with that. I wish someone had done that for me! I just didn’t have the energy to always keep everyone posted.
People often told me they had put my daughter on their prayer list or their church’s prayer list, and I also appreciated that.
One neighbor whose child had a long-term illness dropped off a big bag of dvds, books, and books on tape when my daughter was recovering. That was nice. If you are very close to Brady, maybe you could offer to read aloud to him, when he feels up to that.
I hope Brady has a speedy recovery! I have talked to families who had kids who recovered pretty fast (for GBS). So I hope it goes that way for him.
It is SO nice of you to be such supportive friends.
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How can we help
AnonymousOctober 8, 2007 at 11:38 am
Thank you for suggesting a fundraiser for the Foundation. I personally am delighted that you would want to help in this manner. We are very careful when it comes to these events because we want to make sure that money collected actually comes to us so that we can help patients, families and healthcare professionals. We do not want anyone scammed. Having said that, the first thing people can do is contact their local chapter liaison(s) to help with a Walk-a-thon during our Awareness Month in May. We only had about seven Walks last year but would love more to take place because it also helps with awareness. You can contact the Foundation office for more information. By the way, the Walk is called: Miracle Mile Walk – Because We Can!
Any local newspaper article also can help if you know of a person who got GBS or CIDP and may be in the public eye.
I hope this information helps.
GBS/CIDP Foundation International
AnonymousOctober 11, 2007 at 2:52 am
When did you find out you had cidp? Isn’t this sight awsome. I wish I could give you more information on how to get involved in your area. I’m sure Ms Batman will respond with more info for you. Yeah, I called Barbara Katzman Ms Batman because it’s easier to spell and a lot more fun(hehehe) I so hope she’s laughing. But seriously, when did you find out you had cidp? Where you on the job, where you walking down the street, were you in your house? Yeah, I’m kinda nosie. BIG NOSE.
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