Anyone else here a caregiver or family member?

I joined this site last year, but I haven't been on in a really long time. I feel bad about it because I need support and I want to support others, but I guess I felt a bit out of place because I have not been diagnosed and I can't share personal experience from that point of view. I know all too much about PLS, since my grandfather had it (passed 14 years ago) and my mother is 12 years out from the onset of symptoms. It is heartbreaking to see her in this condition. I want to be strong for my dad but to be honest I am having a very hard time right now.

Is there anyone here who is a caregiver or family member to someone with PLS? Someone else who's just along for the long, unpredictable journey...?

Hi Bear,

I am diagnosed with PLS. It seems to me that caregivers (in this case, my wife -- if you can call her that - I'm largely self-sufficient) have exceedingly difficult circumstances.

I simply cannot imagine how (or even whether) I would handle things had my wife been diagnosed with this disease instead of me. All I can say is that I'm appreciative that PLS was my "calling," and not hers. At the same time, I empathize - and sympathize - with her plight in all of this. These diseases do their damnedest to suck all the life and energy that they can out of caregivers, too -- unfortunately, they don't set their sights only on the individual suffering with them.

Mike

>It is heartbreaking to see her in this condition. I want to be strong for my dad but to be honest I am having a very hard time right now.

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you may want to read thru the "Pity Party" thread ....