told the kids the diagnosis

Nancynurse · 02-20-2012, 12:54 PM

We told the kids last night the diagnosis, I printed out the SP foundation explanation for them to read, our son (25) and his wife had been researching on line and had read that site already, they had an idea that is what the diagnosis would be. Our daughter (29) did not say anything just flipped through the article a little with no comment, (she is the one who told people there was nothing wrong,

it was all in my head.) I can't say I expected anything different. On a good note I got to play with the grandkids, girl 5 yrs and boy 11 months.

Ms. Pie · 02-20-2012, 12:58 PM

Good for you. One thing good, you have some time to mend any fences that need mending. Show them how to do it. Love to you,
Marta

Nancynurse · 02-20-2012, 02:23 PM

no fences to mend she has been focused on herself for a long time, She likes it if we go shopping together because she can use my "handycrap" permit, actually I got the responce I expected from her, I love her and don't expect much from her, so I am not disapointed

ruthiep · 02-20-2012, 07:34 PM

I know that must've been incredibly difficult for you and your family. Will keep you and yours in my thoughts and prayers!

Ruth

HelenL · 02-20-2012, 08:41 PM

It's hard telling your family with this diagnosis, but feels better once they know... which of your kids have the grandkids?

Nancynurse · 02-20-2012, 08:54 PM

My daughter has the 2 kids, My son and his wife if asked about kids answer "KIDS, were not ready for puppies" they have only been married a couple years, and want to go out of the country again, they have already spent 4 months in Brazil on missions trip, and want to do more.

old dog · 02-21-2012, 02:26 PM

People have very different ways of reacting to emotional issues. Sometimes those who clam up are feeling things the most; they are unable to express what they are feeling for fear of breaking down. Also, it takes some longer than others to "digest" bad news.

My son was with me when I received the bad news. The doctor who delivered the diagnosis was very young, and, I suspect, felt anyone my age had lived long enough anyway. She said, in a nutshell, that I could just sit around and wait to die. My son and I laughed all the way home, commenting, "Oh this is wonderful--this isn't immediately life threatening--just takes many more years of misery before the end." Our weird way of releasing tension and dealing with the diagnosis.

Sitting around waiting for the end sure isn't the answer. Remain as active as possible and keep working. Modifications of lifestyle may be necessary, but they can be done.

Ms. Pie · 02-21-2012, 02:36 PM

*like* Old Dog's post!

kmendsley · 02-21-2012, 02:45 PM

Good for you for telling them, and I am going to 'borrow' your idea when I get to that point with my family. They will do much as the same I predict as your older daughter...my mother likes to pretend nothing is wrong. Her recent favorite is buying anything and everything organic to become 'magically' better. I know already, as you may know with your daughter, that they just can't handle it, so they deny and ignore.

Doesn't make life for the one who is sick any better...in fact it makes it worse at times...but maybe someday they will get it and understand. Till then, just enjoy the time you have and look for much needed support from younger daughter and husband who already seem to be reading up and finding out how to support you on their own!

Good luck!

johnnyliverpool1 · 02-21-2012, 05:49 PM

well i dunno........i aint told my kids nowt and aint ever gonna volunteer anything either......if the wanna talkto me about whats obvious then al tell em ....me legs are crap and am old......that will do.....the missus has put em right i imagine but i dunno.....i am the best father and granddad they got and they loves the bones of me.......that will do...pooler.

mookyred · 03-07-2012, 09:24 AM

I take it you have hereditary spastic paraplegia. There is an excellent doctor my neurologist, recommended to me when he thought I may have it. He is at the University of Michigan and darn I forget his name, but I'll get it for you. I did see him and he was the final one who diagnosed me with PLS, but tested for HSP.

mookyred · 03-07-2012, 09:28 AM

Here is the doctor I saw at the University of Michigan. Dr. Fink

Hereditary Spastic Paraplegia Home Page

mookyred · 03-07-2012, 09:33 AM

I don't see the post I made. Just wanted you to know, I saw and expert in HSP at University of Michigan, Dr. Fink. Take a look at his work. He tested me for HSP and diagnosed me with PLS. Here's the link. Hereditary Spastic Paraplegia Home Page

mookyred · 03-07-2012, 09:34 AM

Like that you got to see the grandkids!

mookyred · 03-10-2012, 07:48 AM

Kids definitely respond differently. Your daughter sounds like one of my sister's...lol. I told my kids right up front, when they were trying to tell me what to do, "I am not a child, don't treat me differently." I was a single mom with 3 kids, so I learned the meaning of "survival" (no child support). I swear stress caused my problems, working a stressful job and running kids everywhere and the worries of raising kids. Well, I'm off point now. Well, they don't treat me like anythings wrong but the bad thing is they can go swimming at my house, see things that need to be done, and don't do them...lol. After a quarrel with them all for not seeing to do things, and much stress, I have to call them if I want something done. They know I won't call. I had an old hose sitting out side my house for 2 years, everyone walked by it. I finally asked my nephew to get rid of it. Well, we're ok now, but I was sort of hurt, then again maybe I asked for it...lol