Early in Deana's MM journey and while I was still living in the greater Atlanta area, I was so thankful to connect with the Atlanta Multiple Myeloma Support Group, led by Nancy Bruno. I still enjoy receiving the monthly newsletter and encourage you to visit the group's link and take a peek at the latest edition.
In an email exchange with Nancy over the last two days, she reminded me how important it is for patients and caregivers to join a local support group to share treatment experiences.
The newly diagnosed need to hear from those who have been down this road as it helps to address their fears -- and there are many fears! Nancy suggests that patients and caregivers attend meetings when possible, even if you aren't feeling great and you don't want to discuss treatment. There's no requirement that you provide an update and often you will gain strength from being present.
When patients and caregivers are doing great it is uplifting for the newly diagnosed to see them. Again, this helps to allay fears -- there are people who are living with MM and thriving. (Look no further than the Moving Mountains for Multiple Myeloma team who are climbing Mt. Kilimanjaro as I write this. There are four patients in this group -- they are committed to living a full life and dedicated to advancing a cure.)
There's much to be said for the concept of "pay it forward." As Nancy observes, you may need that karma at some point!
Nancy also shared that research has demonstrated that patients in support groups have better outcomes in part because they are empowered from the expanded knowledge they acquire.
There are over 140 MM support groups in the US. Find the one nearest you at www.myeloma.org.
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