Have you ever participated in a support group? If so, what type and did you find it to be helpful?
I joined one on Facebook when my husband was diagnosed with AL Amyloidosis and found it be very helpful.
When my husband died I joined a support group for widows but didn’t stay in it very long because I was getting too many friend requests from strangers.
Then I found an in person support group for widows at our town’s community center which was very helpful. In fact I made some new friends who are also widows in that group who I meet for lunch.
When I was diagnosed with macular degeneration a few months ago my ophthalmologist told me that one of the best ways for me to slow its progression is with exercise and a healthy diet. So I joined a Facebook group nutrition for macular degeneration which is hosted by a nutritionist. This is probably one of the best groups on Facebook.
I was in a number of FB dementia caregivers support groups. Still am a member and check in from time to time.
They were helpful, sometimes for getting answers to specific questions and sometimes for just venting with someone who understands.
I’m also in a FB support group for atrial fibrillation. It’s also helpful and very well run.
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Wish you good luck with that, as it is very important. My mother eventually died from that because she didn’t know anything about it and didn’t recognize her symptoms. It was caught, but the effect could not be repaired.
My wife is doing cardio rehab now, although according to the literature she is doing everything right, and was before. Unfortunately, you can’t control the genes you inherit.
And there’s your dinner!
@mcarley -Do you have a defibrillator. They automatically correct an irregularity and transmit a message to your cardiologist to monitor various issues. My husband had one but his situation was unusual because he got congestive heart failure as a side effect from the chemo he was taking to treat his amyloidosis
Only happened 3 times for me, but sent me to the ER all three times. Firtst time, shocked my heart, other two, amiodarone got me back to NSR.
I had an ablation procedure last summer that should prevent it. We’ll see.
No home defibrillator. I do have a kardia device that does like a mini ekg. It can tell me if I’m in likely a-fib.
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