Talking with family about ALS

[Pythia]

I am hoping the group can give me some advice on talking with my husband and family about ALS. I am not diagnosed but ALS runs in my family and my symptoms are getting more and more obvious. Soon I will have to start answering questions from my family.

On one side, I don’t want to worry them unnecessarily or appear to be soliciting sympathy but on the other, they will be furious with me for not telling them if I do get eventually get a diagnosis. I don’t know which is better.

I would love to hear from PALS and others awaiting diagnosis how you have handled this and how you think it could have been handled better.

 

[CindyM]

Well, I am always open about everything going on in my life and I work in a place where the grapevine is unbelievable so when they started noticing at work I told everybody what the doctors said, on the theory it is better they hear it from me directly. That's one way to handle it.

BUT: the local guys said ALS and sent me to the clinic, where things get more complicated. My nerves are dying and I do have muscle wasting, according to the tests at the ALS clinic, but my nerves keep growing back so they are not ready to tell me it is ALS.

So there you have it. The upside and the down side of trying to prepare folks. I look at it this way: MND is like having your house burn down, or like having to go bankrupt or any other bad kind of thing. There is no good time for it to happen and no right way to handle it. JMO. Cindy