Re: Do kids w/ataxia ever walk?

October 3, 1999

In a message dated 10/3/99 8:01:27 PM Eastern Daylight Time,

sfitzger@... writes:

<< I feel so bad that I was mean to . But sometimes it just seems like

his life is stunted at 9 months

old. He used to talk and understand everything, now he understands nothing

and says very little. I just

feel like I am losing him.

Thanks for listening.

>>

,

I have been there and know exactly how you feel. I have been frustrated with

the g-tube feedings and having digestive juice spray all over me and the

room. I have actually yelled at " if you only ate like a " " NORMAL "

kid I wouldn't have to go thru this ! " I know how guilty you feel for

saying what your heart sometimes truely feels while you brain thinks

rationally. Just remember that you are a fantastic mom who is doing all she

can to give her son the best life possible and that we all say and do things

that we later regret. I am not sure if you are a spiritual person or not ( I

have just begun to come to the Lord after this long journey with ). If

you are then you know that there is forgivness in all we do and no one is

perfect or without faults. Believe that tomorrow is a new day and that

will still LOVE his MOMMY.

and Complex II-III

October 4, 1999

In a message dated 10/3/99 7:01:15 PM Central Daylight Time,

sfitzger@... writes:

> I am so frustrated and I feel so guilty.

>

You are frustrated and should feel guilty BUT don't get mired down in

that!!!!! He's not intentionally " keeping you from your life " . I get

frustrated and feel guilty for just YELLING at my kids for not doing/doing

something that they should be able to do at their age.

I can not tell you what to do or how to feel but I can share with you that I

myself had to give up the dream of " walking " unassisted for my youngest one

.... it got to the point of having to make a concious decision to push for

" walking " or start working on other goals. We are fortunate that the boys are

not in pain theses days thanks to the surgical intervention. Cory is able use

a reverse Kaye with pretty good results.

There are many (and I mean MANY) assistive aides for walking ... anything

from a regular " plain jane " cane, to walkers, to gait trainers. Some of the

name brands are Kaye, Rifton, Muhammud (sp?), The Pony, The Bronco, for the

bigger kids/adults there is the TheraTrek ... these are just naming a few.

I guess it boils down to what you feel is a " have to " and what you can " deal "

with ... I've gotten to the point in my own " way of dealing with a

neuro-degenerative disease AND my children " .. to the point of knowing (for

my own self concepts) that walking isn't ALL that it's cracked up to be. That

for my children it's fine if they don't ever walk another unassisted step in

their lives. It's not a failure on anyones part ...mine or my child's.

I can remember back thru the past few years ... when the " specialist " were

predicting that Cory wouldn't live to be 5 years old ..they told me that when

he was 3, at the time the " prediction " didn't seem so far fetched due to all

the neuro-diving that was going on ... so for almost 2 years I put that " on

hold " ... it was in the future. I made the funeral/wake arrangements to take

care of the dying part of life so that I , as a mom, could get on with the

living part of life. It was like I boxed it up and put it on a shelf way in

the back of my world, of course every now and then it would hop back down and

bite me in the butt but for the most part it collected dust so to speak. then

the night before Cory's 5th birthday came and my world was no longer stable.

I know it's irrational now but during those long hours between bedtime and

breakfast time I guess I went slightly insane. We put Cory to bed just as

" usual " , did the bed checks at 11pm and hubby went to bed but I couldn't so I

just sat and rocked in the rocking chair sometimes getting up to get the

photo album, watching the family video tapes, that sort of thing .... 1am,

3am , 5am slowly creeped past ... I pretty much counted the minutes untill

" wake up " time ... for some reason or whatever I just had it in my mind that

the day he turned 5 I'd no longer be a mom of 3 children ...as crazy as it

sounds that was what I " thought " , felt , remember. 8am came and went still

Cory hadn't woken up ... then 9 am ... I just couldn't bring myself to " go

look " .I just kept rocking in that chair , looking down the hallway " willing "

Cory to crawl out of his room .... it was between 10 am and 11am that he

peeked around his doorway with this huge grin on his face ... he came

crawling down the hall and I just sat there smiling back at him tears pouring

out of my eyes... he got to my chair and I picked him up WET soggy diaper and

all ... it was at that very second that I no longer had to " wait " for him to

die anymore ... from that second on each minute after is a bonus. WE are in

" over time " .

now about the " can't deal with it anymore, nobody is helping " part ... I am

probably out of line (again) but my heart pulls to share something very

personal and not so pretty about " my " self ... a mom with challenged children.

take it for whatever it's worth .....

I can look back at those years and know with out a doubt that during those

times it can be pin pointed that is when " depression " came into my life. It

wasn't the typical depression that most folks " know about " .. it was actually

IS the silent kind. Where we stay so busy that we are able to tap down

thoughts/feelings that are too hard to veiw personally. My type of depression

is that kind that keeps a person from sleeping at night because we (I use

" we " because of the other moms that I have met along the way " also " have felt

the same thing not because I have a multiple personality <well? are afraid

of our dreams ... during the day we are able to stay so busy that it silences

the thoughts but at night our subconcious tries to work " everything " out in

our dreams. So the silly one (like myself) fixed that by just not sleeping

.... on the outside we " look " fine, like we are coping just swimmingly. the

kids are fed, dressed (cleanly), the house is not SPic and SPan but well

kept~lived in. Our weight goes up and down. We are usually the first ones to

offer help to others but the last to accept it ourselves. Inside we know how

fragile we are but when anyone ask about " us " we just respond " Doing well,

doing fine, a bit tired but .... " after a while it's just a " rote " answer. We

go to the doctor appts for our kids, the school functions. Pretty soon we are

faking it pretty well , knowing we have to watch out for the bumps in the

road (birthday parties, baby showers, neice/nephews coming over to play) that

will rock our little " cookie cutter gone mad " lives. Most of us never realise

that the culprit is not the child's disablity but our coping skills untill

something " goes wrong " ... a step in the wrong direction or somebody actually

looks under the mask that we've constructed for ourselves or something really

" weird " happens that we can no longer " live " with. For me it was going bald in

patches. At the age of 27 I just couldn't " take " having bald patches...

vanity " saved " me , now is that the weirest of weird things that could happen

and turn out for the good???? I went to a dermatologist ..he did the

" testings " and said there isn't anything " viral/bacterial " going on to cause

me to loose my hair , and boy was I loosing my hair , it looked like I had

the mange!!! Gross!!! I have pictures , I keep the pictures as a reminder to

" take care of ME " so that I can be able to take care of my family. The

dermatolgist asked me if I had any stress going on ... PFFFFT I replied " Umm

Yeah ya got an hour to hear it " you know with that " humour tone-like " mirth.

This wonderfull man said " I'll be right back " ... left the exam room for a

few minutes and came back with two cups of coffee. He litterally cleared his

schedule ... anyways he listened to me talking about the boys, med. test,

feeling frustrated about not getting answers, the soul wrenching feeling of

feeling like I wasn't doing enough to help the boys, etc ... during the whole

time he didn't show pity or show in his body posture " overwhelmed " feelings

(you know when ever you actually did speak bluntly folks got that startled

deer look and found a way to make a hasty retreat event), he did ask

questions to clarify a med. term but didn't try to reason " my

thoughts/feelings/actions " into what he would/should/could do in my place.

When I got done he stood up and stretched then said " Now I'd call that

stress " . No condensation, congratulations, experation ...just the plain old

bald faced " statement " . He said that he could make my hair grow back

" faster " than nature would do it by injecting stuff into my scalp to " thin

it " , but that unless I took care of the stress AND/OR how I was coping with

it that I'd just be back in his office or worse in the future. He did

prescribe two different sleeping pills so that I wouldn't become addicted to

them and asked if I'd be offended if he suggested anti-depressents. He said

that after an extended time of being under chronic stress coupled with the

sleep deprivation that my body was litterally killing me one day at a time.

So having admitted to everyone here that " yes I am insane " I can say with all

honesty that it's the best honest statement that I've ever said or been told

ever. I did take the anti-depressents and the sleeping pills that he gave to

me (office samples) and walked out of there with 5-6 knots sticking up around

my head (ughh boy did it look weird) ...I took the " drugs " for 30 days and

came back for my " re-check " ...my hair was growing back wonderfully , and I

did sleep every night as peacefull as a baby. The two sleeping pills were of

" different " calibers ...one I could take and as long as I stayed " busy " I

could stay awake so if the kids were " sickly " it wasn't hard for me to be on

" night duty " . The other was very powerfull .. I took it every 3 days ...

after the first week my husband said " TELL ME when your taking that one "

....LOL both nights that I took that particular one he had to carry me to bed

.... 30 minutes after swallowing it I was " out " (once in the middle of the

kitchen floor, the other time it was the rocking chair). Anyways when I went

back to the dermatolgist I was a total different person ... instead of having

to " fake it to make it " thru each day I was finding true enjoyment in the

little things again. I thanked him profusely for saving my life ... I know

with out a doubt that the way I was heading was straight to nowhere ... I

remember having thoughts of just putting everyone in the Van and driving off

a cliff.... they were just random " thoughts " that were only " thought " for a

milisecond but still they were there.

So for years I had never given anyone the impression of being " chemically "

imbalanced , I didn't know it myself either... in fact when I told my family

and close friends that I was taking anti-depressants they all reacted with a

" WHY?? are you doing that " . That's how slowly it occurs ... it's not NEON

blaring obvious even to ourselves that " that " was going on. IT wasn't untill

after the derma's visit that things really got better for me ... nothing

really changed with the kids ...we still don't know what " exactly " is going

on , or when they " will " die or even if they will " die " in my lifetime. The

bills aren't magically " gone " , nor is the other everyday stress of just

living. I've come off the anti-depressants and rarely take sleeping pills

anymore , though there has been 2 times when I did " restart " everything again

.... I was able to recognize the " symptoms " and got right to the doctor

requesting 30 days " worth " of .... I do have to fight the insomnia " ritual "

.... when I find myself not sleeping for whatever reason I wil do a 3-5 day

stint just to get my body back into sleep mode again.

I didn't type this to say " Your nuts " but to say that sometimes because of

extenuating circumstances our bodies get out of " whack " because of what we

are having to do such as pulling allnighters for a week watching over our

kids during an extremely sick illness, or life just gets to be too full of

" everything " . I shared this story because maybe it can give someone a bit of

comfort to know that they aren't alone. That it's ok to ask for help. Oh

goodness I forgot to tell ya the really " freedom " that the dermatolgist gave

me ... LOL how could I have forgotten to type that sooner??? Oh well on the

day that I first went there along with suggesting that I start on the

anit-depressants and sleeping pills he told me to " SAY what on your mind " , if

someone says " just tell me what I can do " , then TELL THEM!!!! ... he said to

tell the folks that were just paying lip service to Shut the heck up... you

know the ones ... " Oh you must be special because G-D only give special

children to... " or the " Your so strong, I couldn't do it " type folks ...you

know the 101 pat responses from non-challenged parents/people. Oh boy did I

have a feild day ...er week!!!! It was so liberating not to have to be polite

to everyone ... odd how I needed someone's permission to respond in the way I

wanted to but was raised NOT to do. When ever anyone said " Just call me if

you need.... " I asked what time is too late to call, if they offered to " do

something, whatever it is just let me know " I was prepared with a list. To be

honest it quickly weeded out the " folks " . But to be honest with you those

that fled the scene were some of the ones that were dragging me down

emotionally if that makes sense. I have to confess to feeling such " power "

inside by being able to respond to the " HOw are you doing " questions with a

" You truely don't want to know the real answer to that do you? " ... LOL some

would say " Yes I do " and boom I was telling them ... of course I didn't keep

them captive but you know it was nice to say in words how much I hated being

PITIED , that the boys were not " burdens " to me and that the only cross I had

to bear was the folks that couldn't/wouldn't really get to know the boys to

see for themselves that Yeah they have their challenges but look at all the

other things they have TOO. Oh boy it was a week of tirades from hades and I

needed it!!! After about a week my mother requested that I tone it down a bit

that they all got the message and " saw the light " . I was getting tired of the

" power " but instead of packing it away in a closet I just stored it in my

purse ... not always " out and shouting " but within easy " touchstoning reach " .

What I realised also was that there were people around me that truely did

want to help they just didn't know how to go about it. And I learned that

accepting help didn't make me any " less " strong as a mom but that it actually

made it so that I could be truely a " strong " mom/force for my children. So I

don't type theses words lightly ... Take care of YOURSELF first or there

won't be enough left for everyone else. IF your at the end of your rope let

go and grab onto somebody else's for a while. It doesn't mean that your a

failure if you cry " Time out " . Find respite care for your little one even if

it means that you and your husband take seperate vacations so that the other

one can be the " sitter " . A weekend away at your local motel can do wonders

for your soul/strength. The cost is cheap in the long run .... I pack a

picnic basket full of chips/soda/sandwiches and a few coolers (my fav is

Fuzzy navel) along with books and a bottle of bubble bath. Drive 5 minutes

down the road and check in ... my hubby can reach me if something drastic

goes on at the house but other than emergency calls I don't hear from them at

all. It's so nice to just recharge all alone. By Sunday morning I'm almost

" ready " for the rugrats to need me for whatever reason... but I resist (LOL)

I show up back home on Sunday afternoon/evening and it's just wonderfull. For

about 70.00 total it's worth it and more emotionally/physically and soul-ly.

Please take care of you ... be gentle with yourself because sometimes moms

(ok and dad's too) tend to put ourselves on the bottom of the " To do for

list " ... never really getting around to doing anything special for " me/you " .

My wish for you is to find a place that is " comfortable " to be in ... take

care and best wishes from an Elf iN TN.. (who talks too much and sticks her

nose in other people's business too often).. Romona

mom to Tori (age 11, 5th grade/inclusion, processing disorder), Zach (age 9,

multichallenged from eyes to toes, 3rd grade/ERC), Cory (age 7,

multichallenged from eyes to toes, 1st grade/ERC~inclusion) and wife to Tony

(my hero)

http://members.aol.com/elf808

October 4, 1999

In a message dated 10/3/99 10:10:15 PM Central Daylight Time,

marilou@... writes:

> Until tonight, I didn't think there was anyone else that felt the way I did

> and would admit it. I appreciate your candidness and know that by telling

> your story you will help someone else that is on the edge to accept help

and

> start taking care of themselves.

> Thank you, ML

> --

> Lou

Thanks Lou!!! It is sometimes scary to talk about the un-talked-about

huh? It's hard to lay your " soul " on the chopping block praying nobody

unleashes the blade. I really appreciate your post too, it's taken the fright

out of baring the soul on this topic.

I look forward sharing with you again ...either here on the list or

privately. Thanks again for everything.

Romona

October 4, 1999

In a message dated 10/3/99 5:01:21 PM Pacific Daylight Time,

sfitzger@... writes:

<<

I feel so bad that I was mean to . But sometimes it just seems like his

life is stunted at 9 months

old. He used to talk and understand everything, now he understands nothing

and says very little. I just

feel like I am losing him. >>

,

I know these feelings VERY well. My daughter is 3 yr. and can't even

sit alone. She as low tone too. She functions at about a 5 month old. Karly

also has autistic like actions. I don't know what to say except this is the

place to vent your feelings because we all understand. I have said that I

wished my daughter was dead through my anger. BUT, in my heart I never wanted

that to be true. We have probably all said things we didn't mean. This

doesn't make you a bad mother. You said he used to talk. Have you ever tried

the supplement DMG? <A

HREF= " http://www.autism.com/ari/editorials/dosage.html " >Autism Research

Institute</A> Maybe this would be of help and maybe not. Don't be so hard on

yourself.

God Bless

October 4, 1999

,

I just saw your message and had to respond. I have lost my temper with

more times than I can count and have always felt rotten about it

afterward. I feel a hundred times worse about losing my temper with her

than I do with my typical kids because she can't help the way she is.

Your reaction after being at an event where other children are doing the

things that you want your child to do is so normal - I've felt it a million

times and it really hurts. The grieving process we go through as we deal

with each missed milestone is devastating. If you try to look at it as part

of a grieving process and give yourself permission to grieve, then you won't

feel as guilty. Another thing that I have used is to remember that I

wouldn't expect someone else that is grieving to handle everything as if it

hadn't happened - even though I expect perfection from myself.

Face it, having a kid that may never walk, or will be 3 (mentally) forever

is no picnic - and there have been many times when I just wished

would die so we could get on with our lives - that feeling is totally

unrelated to my feelings about her and my love for her, and completely

related to the sacrifices we have made (and have to make) because of her.

Many times I want to be like other families - do things spontaneously - go

to movies (other than little kid ones) together - it goes on and on.

I can't tell you if will walk, I just don't know. is ataxic

and she walks, but when she is doing poorly, her low muscle tone prevents

it. We got her a wheel chair long ago - started out with a Pogon stroller -

it really changed my life because I didn't have to carry her and she was

comfortable. Ataxia is so broad - not just focused on one muscle that I

doubt that there is an orthopedic device for it-but I am far from being an

expert. What does the physical therapist say? - they work with kids every

day and have a lot of experience that is valuable. Are you getting services

in your school district? I am not trying to pry, just trying to provide

some avenues that may make you feel like something is being done to help. I

know that having competent therapists that can help you figure out

reasonable expectations that are still challenging for your child can go a

long way toward feeling like you are doing what you should and lift some

pressure about feeling like if you don't push, push, push they will never

progress. Some things are worth pushing because it makes a difference -

others aren't and the frustration mounts when you don't get anywhere. It

was also very hard for me to accept that I couldn't be 's teacher or

therapist and that I could never provide the kind of structured environment

that her therapist's and school could provide. Home is just plain different

- no matter how many skills you have a parent.

It is so hard to have your child lose a skill they had, and I know your

frustration so well. You need to forgive yourself for getting mad, and

remember that we all have moments we'd like to forget.

Finally, I would say that you are not alone, and that over time we have come

to appreciate the benefits that our sacrifices have brought us - our boys

are much more nurturing and tolerant because of - our 16 year old son

is a highly sought out babysitter for infants as well as children because of

his love for kids and experience with - he wants to be a

pediatrician. It does get better, with bad days intermittently.

Try to take a break - any way you can and do something that interests only

you. You need to take care of yourself too.

ML

--

Lou

mom to ,14 Complex I and I+III; Jeff, 16 and Greg 10 (no symptoms)

----------

>

>To: Mitoonelist

>Subject: Do kids w/ataxia ever walk?

>Date: Sun, Oct 3, 1999, 8:02 PM

>

> I am so frustrated and I feel so guilty.

>

> I went to a birthday party today with for a friend's son who just

> turned one. He is starting to walk

> all over the place. , at 2.5, can't even stand alone without support

> and can only take about 5-10

> steps before falling down. The docs say this is ataxia, but I don't know for

sure.

>

> Anyway, I got so upset that I came home and tried to force him to stand up.

> Of course he kept falling

> over. Then I threw him to the ground and told him that I couldn't wait

> until he was dead so that I could

> get on with my life. I feel so bad. I just can't take it any more.

> Nobody is doing anything to help

> this child. The orthopedist says there is no device that would help. The

> physical therapist insists that

> has low muscle tone, not ataxia, and that is why he cannot walk. The

> neurologist thinks it's a

> neuropathy. I am so confused. All I want is for to walk, and no one

> is helping

>

> Does anyone know of any orthopedic devices, etc., that might help him? I

> asked the neurologist about

> drugs for helping balance and she totally blew me off. I am so fed up with

> doctors. All they want to do

> is test, test, test, and never once mention the word, " help. "

>

> I feel so bad that I was mean to . But sometimes it just seems like

> his life is stunted at 9 months

> old. He used to talk and understand everything, now he understands nothing

> and says very little. I just

> feel like I am losing him.

>

> Thanks for listening.

>

> > Brought to you by www.imdn.org - an on-line support group for those

> affected by mitochondrial disease.

>

October 4, 1999

Romona,

I feel like you just told my story. I too was near to a breakdown when my

daughter's psychiatrist did the same thing - he already knew what I had been

going through, and I was starting to fall apart while remaining strong and

together on the outside. He sat me down and made me let it all out, then he

set me up with an adult psychiatrist that could prescribe medication for me.

I've been taking an anti-depressant for about 4 years, and although I do

well most of the time, I am afraid to stop for fear I will go back to that

dark hole. It is so scary to think of acting like I'm fine while I am dying

inside. I know now that a chemical imbalance can be caused by stress - it

is not a sign of weakness or instability - just the body reacting in the

only way it can.

Even now with so much of my issues worked out, I have times when I just

can't cope - and I often have to battle my weight because during those times

I seem to find comfort in food. One thing that has saved me is having

interests that are just mine - using my brain to think and be productive

beyond that of a caretaker. I also need to get away sometimes. I often try

to get my closest friend that lives in Tucson to go with me - because we can

talk honestly. My friend's daughter drowned in their pool, so she

understands a lot of the feelings I have. She doesn't even blink when I

tell her how I really feel. We all need someone like that, and it can't

always be our spouse. Sometimes their pain is such that they just can't be

the one to be the sounding board.

Until tonight, I didn't think there was anyone else that felt the way I did

and would admit it. I appreciate your candidness and know that by telling

your story you will help someone else that is on the edge to accept help and

start taking care of themselves.

Thank you, ML

--

Lou