Life Issues with GBS and CIDP–part 2
Please note the disclaimer at the top of the thread.
This was a topic of considerable debate and discussion. The discussion was this. The only major link with immunizations and GBS was with the swine flu shot. This was a somewhat unique situation in how the virus was produced for the swine flu vaccine. GBS occurs after other immunizations, but it is not 100% sure that this has a cause-effect relationship or just that uncommon things happen as well in a population in which a common thing happens. This being said, there are pretty convincing cases of people getting GBS after a flu shot and occasional cases of people getting GBS a second time after another flu shot. It was said, not to keep getting them in that case! For the rest of the people with GBS, there is little evidence that the flu shot (if it was not associated with GBS the first time) will lead to GBS a second time. The discussion with flu vaccine is that each year’s flu vaccine is different than other years. There is a risk of relapse of GBS, but the exact risk is not known. One should be cautious about getting the flu vaccine again, but most neurologists that commented said that they recommend it.
One person’s recommendation was no immunization in the first year after GBS even if the GBS was not associated with a vaccine. After that, think about the risk and benefits and talk with your neurologist.
There was discussion that in CIDP, perhaps as many as 5% might have some worsening of symptoms after any vaccine, but only 1 person (in the 200 studied) had enough worsening to need to go to a hospital. There was discussion that many people with CIDP are weakened, debilitated to some extent, and have a relatively high risk of dying from influenza, so that the risk to benefit statistics are on the side of getting the flu shot for protection. Several times it was stated that for a general person to get GBS in association with the flu shot the risk is about 1 in 125,000 and the risk of older debilitated people dying of influenze is 1 in 1000. For CIDP, it was stated by one doctor that he recommends the flu shot if someone is weak especially in breathing system or immunosuppressed and that if there is any worsening, he adjusts the medications to keep the CIDP under control. One point to think about is that if CIDP gets worse (in likely contrast to GBS), a person is unlikely to be hospitalized on a vent. The changes in CIDP are not as great and often can be rapidly suppressed with adjustment in treatment.
There was also discussion that some of the bad press with immunizations was due to the old rabies vaccination which was made in rabbit brain. The newer rabies vaccine is grown in duck eggs, so there is considerable less risk of GBS.
There was also discussion about the timing of GBS after immunization. Most people said that the GBS needs to have happened within 4 to 6 weeks of the immunization to be considered associated with it. The CDC says 4 weeks.
Set realistic goals for each day—what can I do for myself today?
Try to accomplish goals one step at a time not in large blocks. You still get it done.
Be your own cheerleader.
Be kind to yourself.
Find what works for you.
Communicate with those around you what you need and want—they cannot read your mind.
Work to make people comfortable around you and the changes/disabilities you have in your life.
Realize that the whole family and support system is affected by your illness and that all of you need to heal.
Accept help and make connections with others.
Accept change as a part of living and that you do not have control over everything.
Honor where you are in the process as you go through it.
Take action. Act as if things were different and this can help it to be so.
Exercise and take care of yourself.
Think about assistive devices as ways to help you live your life and not to define who you are. For example, glasses do not define you, neither should a walker or wheelchair.
[B]Advocacy and communication.[/B]
Advocacy is complex. Talk to Ed Gdula before making press announcements or using the name of the GBS/CIDP Foundation.
There are 23000 people that have contacted the foundation and 160 chapters. If you write or call to the foundation, they will send you a handout about advocacy as well as many links to web resources for people with disabilities, etc.
Several of the speakers of these topics said that they would send their PowerPoint handouts to the GBS/CIDP Foundation for distribution if requested. This included handouts about physical therapy and assistive devices and equipment and Advocacy and resources for disability. If you would want this write or call the GBS/CIDP Foundation. If not, I have her email.
Special thanks to Drs. Parry, Lisak, Amstutz, and Ashury and Mrs Lisak, Mr Gdula, Rich, Fuerst, and Killicutt and Ms Zell as well as the many other experts that chimed in with answers to questions.