Re: a belated introduction on the way to getting a diagnosis

[Guest guest]

Jan:

What a wonderful way to deal with the younger ones. There really is

nothing like the honest to God truth with a little discretion with the

younger ones. You have set a standard in your approach.

Message: 21

Date: Wed, 29 May 2002 20:08:29 -0000

Subject: Re: a belated introduction on the way to getting a diagnosis

Barb D

Your message made me pause a moment and remember a few years back.

My husband first started with symptoms when our youngest was 12 yr.

old. That is the same age our oldest was when I was dx with Cancer.

Children are all different in their levels of understanding and

family dynamics are different as well from one family to another. We

decided that at 12 yrs. old our children should be aware of problems

we would be facing since the entire family must work as a unit. Our

sons at 12 asked intellegent questions and were up front about their

fears and their concerns for not only their parent but for

themselves. We answered questions honestly but tried not to

elaborate beyond the childs ability to process the information, we

knew there would be time for more in depth questions as they got

older. There were some heart wrenching questions like " what would

happen to me if you and Dad both died? " We explained that we did not

think that would happen but that plans had been made and addressed in

our Wills. We proceeded to discuss those plans. Mind you, all the

questions did not come at once. They seeped out slowly over the

years. We talked about why certain symptoms appeared so they would

understand intellectually and then be able to digest the information

on many levels. We made sure that they had as normal a home life as

possible, including the same family jobs as always and an " I'm

looking for volunteers to help me with " attitude on other jobs. They

were good at volunteering one another and we would all laugh

together. I made a point of expressing my frustration out loud at

times. This opened the door for them to do the same. We adopted the

attitude of " if we can do it now, let's do it " and we took some

vacations we knew we wouldn't be able to do down the road. Things

like watching Dad fall out of his chair at a school performance were

sometimes hard but we found ways to move on with a little laughter.

Today my son at 17 can discuss the illness, knows that it is

terminal (a word I did not use until recently) and is taking the time

to be with his dad while still being a teenager. He will ask

questions and appreciates good valid information. My husband and I

agreed that whenever possible we wanted the boys to do age

appropriate activities and never feel like it was their

responsibility to care for their dad. I believe that that attitude

has kept them from being resentful or from feeling like they are

missing out on something. They also know that they are a part of a

family and that means working together to provide the best for each

family member. Our older son (24) lives in the area and speaks to

his dad everyday even when traveling and makes time to come around,

help with whatever and will take his dad out for dinner. They both

understand that opportunity is knocking right now. The older son is

now taking his younger brother out to do some of the things he did

with dad that his brother won't be able to. They have gone on

vacation with their dad while I was out of town and managed all his

care between the two of them, including catheter bags, bowel

problems, c-pap units, oxygen etc. They spend a lot of time laughing

and when on a cruise decided the best way to handle things was to

take dad out on the veranda and get a deck hose to shower him. All

three of them laughed themselves silly imagining that scenerio. Of

course they were still laughing as they got dad showered in the

bathroom.

All of this was a well thought out plan of action we decided upon

from the beginning. It has been five years of working to make our

lifes balance the disability and the abilities so the children did

not have to feel overwhelmed. We took friends up on their offers of

help so our son could get places if I, as the caregiver, could not

get away. They have now spent five years and seen their dad go from

walking, to using a cane, to a walker, to a wheelchair and then they

experienced a week in ICU with Respiratory failure. We laugh a lot,

the boys joke about things with their dad and he jokes back and we

have all cried together. The plan worked for all of us and no one

feels resentful or angry. We have all had fun in spite of the

illness and we still look forward to each and every day. I think

this attitude has helped my husband stay positive and upbeat over the

last five years.

I hope you find a way to make this work for your family and that you

will all grow closer as a family unit. God Bless you all.

Jan

> Dear List Members: Anonymity has its place, I guess, but it doesn't

> seem the norm here. I posted a somewhat more complete profile last

> night as I may be here a while. My basic issue is that I have a

> diagnosis of (undifferentiated) parkinsonism since Jan 01 but for a

> variety of reasons strongly suspect it's atypical and that

ultimately

> I'll get some sort of PD plus diagnosis. In the indeterminate

> meanwhile the uncertainty and ambiguity is making me crazy. Maybe

I'm

> deluding myself but I'd rather know than indefinitely suspect

> something bad. Another issue is how to deal with younger kids==mine

> are 10 and 12 (I'm 45). I've exchanged at least a couple messages

> with Bill (I am taking your advice: I have a neurology appt

scheduled

> for later this month, and I got a bus pass yesterday) and I had the

> distinct pleasure of meeting Deborah at the PAN forum in DC last

> week. I look forward to getting to know others of you better as

this

> is clearly a caring and supportive group. As there are numerous

Barbs

> on this list, I'll go by Barb D to avoid confusion. I'm grateful

for

> the existence of such a group: it's clearly invaluable. Barb D

Sennewald Charlottesville, Virginia

[Guest guest]

>

Dear Deb;

Thanks for the prayers and kind words. I'm sure you didn't want to be

an inspiration to others in quite the way that you truly are, but

even knowing you so slightly I appreciate the character, perspective,

grace and humor you embody and share very generously.

I suspect self diagnosis is a dangerous path (I DO have an appt!) but

I have anisocoria (ironic that it's currently being

discussed)/bilateral Horner's (my pupils dialate and constrict very

sluggishly), both feet are numb, and my left hand has action induced

myoclonic activity. I'm also erratically dizzy and have pretty

disorganized gait [only] in the dark. On the other hand, in the

middle of the day, just walking around, it's mostly mild

rigid/akinetic parkinsonism. It may not be MSA but something is

definitely going on and I need people to talk to: even finding

younger women with PD is essentially impossible here, let alone a

support group for PD+. So I'll gratefully accept the prayers and

return them in kind. I'd also appreciate feedback on the diagnostic

process from individuals who were relatively young and otherwise

healthy at onset. Thanks. Barb