Need Help

[Guest guest]

,

Several things come to mind here. First is to check for all types of

infection. Infection of any type will cause all kinds of sudden

problems and worsening of symptoms.

Second, is he taking any anti-depressants? If not it is time to

consider them if he does not have an infection.

Third, Has he had a sleep study? If he is not getting proper sleep,

sleep apnea could be causing some of these problems and it is common

among MSA patients. CPAP or BiPAP may be able to help him if he has

sleep apnea.

Take care, Bill Werre

====================

Maciejewski wrote:

>Hi folks,

>

>I don't post alot, but I read the digest daily, and print messages that I

>think would be helpful to Jeff or his doctors. I need some advice. Jeff

>has gone in to a period where he is very emotional about his condition. He

>has broken down twice this week (we have been together 6 years, and I had

>only seen him cry once or twice that whole time-both times within the past

>12 months, relating to the disease) He came home from work today just to

>see me, because he says that he feels like he's getting to the end, and

>that he feels as though he's dying inside (physically-not emotionally).

> He's afraid to fall asleep because he's afraid he won't wake up. I have

>asked him why he feels like this, and he says that physically he's weak,

>out of breath alot, lightheaded, dizzy, sees things in peripheral vision

>that are not here. Also, I've noticed he gets sudden sharp pains in his

>head from his right eye up over the top of his skull and to the base of the

>neck. He says it feels like an electric shock. It happened yesterday when

>we were at the mall. He's stumbling ALOT more. He wears the support

>stockings that go up his calf to aid in the swelling, and hand & wrist

>supports. He keeps dropping his keys, utensils, cell phone, etc. Today he

>cried and told me how sorry he was that he's putting us through all of

>this. We saw the doctor last week and he's ordered another MRI for later

>this week to see if anything shows up. His last MRI was in January and was

>mostly inconclusive. Can anyone out there relate to what he is feeling? I

>can't even begin to imagine what he's going through, all I know is that my

>husband, lover, friend is hurting, and I feel completely powerless to help

>him. Since he came home this morning, I've had a lump in my throat that

>won't go away. Any input would be appreciated. And, again, thanks to all

>of you for listening.

>If you do not wish to belong to shydrager, you may

>unsubscribe by sending a blank email to

>

>shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

,

Does Jeff have any sleep devices like CPAP (Continuous Positive Airway Pressure) used for treating Obstructive Sleep Apnea ? If so, this should enable a person to sleep without the fear of not waking up. I think it is perfectly normal for Jeff to be depressed or sad about what is happening to him. Are there any activities which you both enjoy doing, that might take his mind off things a little ? Another option may be to acknowledge his feelings and fears as well as yours, get it all out in the open and then do the best you can from there. Please don't think I am trivialising your situation, it is obviously extraordinarily difficult. I can't suggest anything else, I pray for you both that you can work through this difficult time. One other thing is, as a man, a father and husband, I have no problem with crying in front of my family. There are times it is a perfectly natural thing to do and it is better than trying to be stoic and bottling it all up inside of you.

Take care.

Regards

Maciejewski wrote: Hi folks,I don't post alot, but I read the digest daily, and print messages that I think would be helpful to Jeff or his doctors. I need some advice. Jeff has gone in to a period where he is very emotional about his condition. He has broken down twice this week (we have been together 6 years, and I had only seen him cry once or twice that whole time-both times within the past 12 months, relating to the disease) He came home from work today just to see me, because he says that he feels like he's getting to the end, and that he feels as though he's dying inside (physically-not emotionally). He's afraid to fall asleep because he's afraid he won't wake up. I have asked him why he feels like this, and he says that physically he's weak, out of breath alot, lightheaded, dizzy, sees things in peripheral vision that are not here. Also, I've noticed he gets sudden sharp pains in his head from his right eye up over the top of his skull and to the base of the neck. He says it feels like an electric shock. It happened yesterday when we were at the mall. He's stumbling ALOT more. He wears the support stockings that go up his calf to aid in the swelling, and hand & wrist supports. He keeps dropping his keys, utensils, cell phone, etc. Today he cried and told me how sorry he was that he's putting us through all of this. We saw the doctor last week and he's ordered another MRI for later this week to see if anything shows up. His last MRI was in January and was mostly inconclusive. Can anyone out there relate to what he is feeling? I can't even begin to imagine what he's going through, all I know is that my husband, lover, friend is hurting, and I feel completely powerless to help him. Since he came home this morning, I've had a lump in my throat that won't go away. Any input would be appreciated. And, again, thanks to all of you for listening.If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

Hi. is it? I didn't see a name at the end of the post...

Yes. I can relate to what your husband is going through.

He's still working? That is good. I am still working too, but my

internist told me a week or so ago that I should file for

disability. Just as with the use of a cane, I feel that disability

would be like a " kiss of death " - as I'd accept a " crutch " and then

start giving up.

I too was in tears about a week ago. Not because of... ah... I

remember what it was... I was watching the Jerry MDA

telethon. There was a guy on there my age - who was expressing

similar sentiments to mine - about being thankful that at least he

got extra time to change some things in his life...

Well, I can relate to your husband. That day was particularly hard

on me. Not what the guy said, but it was a down day physically (as

many - too many - are nowadays). As your husband related to you...

I felt like I was dying. I almost messed up that day. My 11 year

old daughter was on the couch beside me, and when I leaned over on

her, I almost told her I felt I was dying. But, I had enough

presence of mind to realize that this would probably result in added

stress for her. What is sorry, is that instead of telling my wife, I

covered myself up with a blanket. After a couple of hours, I finally

was able to fall asleep. I awakened feeling a bit better - but not

much.

Tonight, I don't feel like I'm dying. But, I'm pretty good at self-

denial too :-)

How is your husband doing? Is his regression really obvious to him?

This weekend mine became more obvious. I went to a picnic. I played

horseshoes, and leaned against a light post between each turn. After

that one game - I had to take a nap (see Bill - I take siestas :-).

The rest of the day, I was virtually wiped out. I watched my girls

play at the park, but I could not play with them, as I had just a

month or two earlier. Plus, I lasted just 20 minutes, instead of 2

hours. We have noticed similar patterns with our monthly family

trips to Silver Dollar City (have season passes). I had a 50% drop

in ability to function. It's been sooo gradual though... And then

there is another factor. Check with your husband on this one...

Others tell me I look good. That one is a joke. My wife knows how I

am. What I have learned, is how to become a good faker. I think

people genuinely think I look better - but I joke and say that if you

smile - and are skinny - they think you look better. I know I'm not -

because I can't even lift simple things I used to, and I now do use

that cane - often.

Regarding the emotional break-down... how long has Jeff been

afflicted? For me, the first couple of months were the hardest. Hit

hard and fast. I was super frustrated at being sick, and unable to

provide for my family as I had. I saw at least a 50% drop in income

those first 2 months. Since then, it's dropped another 50% - at

least. For me, that was tough. Others I work with have been very

patient - and they really appreciate what I can do. In fact, as one

told me today - even sick, I'm still better than the best out there

if I'm not there. While I appreciate the compliment, I see myself

failing daily. Friday I saw less than half the patients I had

planned on seeing. I just had to tell my wife - drive me home. I

could go no longer. Today, I saw no clients. I have so many reports

waiting to be written, for which deadlines have already come and

gone, that I no longer keep track.

I used to really be concerned about knowing my future. As a

Christian, I know my ultimate future, and am confident of that...

but my earthly future - that is what I wanted to know. How much

longer would/should I work? I have now put out ads across the

southern US to see if I can find someone to take over my practice.

So far, no success, so perhaps I'm going to get better? :-)

Anyway, if your husband is being open in expression - be thankful. I

was dissimilar. I pushed away those I loved. I became bitter. I

was mad at the world. Anything - any little thing - upset me. Now,

I pretty well roll with the punches. Not perfect, but better. We

all have different ways of coping. I have accepted that there is

little I can do - but just take it one day at a time - and be

thankful for each day. My priorities have shifted big time. Family

has always been high - but now family is always #1. If there is a

choice between doing something with them (like an upcoming trip to

CA),then the time with them wins out. Of course, they have little

control over some of that either. You see, we homeschool, and my

wife is my secretary. As I no longer drive, that means if my wife

wants any income - she has to drive me. So, we got a van, and have

our car up for sale.

Do you have any children? If so... older, younger?

By the way, I have told my wife about the feelings of dying. We just

don't talk about it much. Instead, we're planning for it. Little by

little we're getting plans made. And... if I don't pass soon - then

great. But, any time I have is " extra " time, because my doc fully

expected me to pass last winter :-) Showed her. In fact, even

though they messed me up pretty bad in the hospital, I managed to get

a bit better after I left.

I can relate to the electrical pains too by the way... My doc said

I'm not having heart attacks - because if they're electrical - then

it's neuro related. I also have headaches - but mine are a bit

different - straight shots in my left ear. Can definitely relate

though.

Guess your hubby is still walking around. That is good too. I'm due

to get my first taste of a wheelchair in CA next month. I don't want

to - but I realize it will be easier on my family if I do.

I can relate to the inconclusive MRIs too. Seems everything they do

on me is " inconclusive " - well... almost. They did conclusively say

that I have autonomic neuropathy - and that I have anemia, and...

Just that the " biggies " - like the MRI and bone marrow tests -

were " inconclusive " . Not that there were not problems there - but

that the problems didn't fit their set of expected problems. Make

sense?

Bummer! Had a lot more written, but hit a wrong button and it

seemed to go the same way as my hard-drive did last week. That is

soooo frustrating. Switched now to Word, and will cut and paste it

back into the post after I'm done.

Anyway, have no idea where I was now – but it was good! :-)

Well let's go back to the end then I have no idea what I lost :-(

Anyway, a few words of encouragement

You were wrong

You are not powerless.

For starters, you have the power of prayer. I was just sharing with

a coworker today – that many seem to think their prayers are

fruitless, but I am convinced, if not for those prayers, I would

not be able to do anything. True, total healing has not come, and we

all desire that – but on many counts, I should not be able to do

anything at all, yet I do still function. So, please remember your

husband in that way.

Second, you have an immense amount of power in your relationship with

him. It is obvious you two are close. Retain that closeness. Let

him know that nothing is going to come between you. That you will

remain there for him for always. I'll bet you've already told him

that you don't hold it against him that he got sick too. (I say this

only because you mentioned something about his apologizing to you.)

I'll tell you what As long as he's got you – I'll bet he'll be

fine. Just hang in there with him. If you need support for him,

there are many of us here who would be glad to offer it. My regular

email address is: rehoboth@...

If you need support for yourself, there are also many here – like

Vera (to mention just one) who are also " caretakers " (which is what

you – or anyone involved in Jeff's life is), who also would be more

than happy to offer encouragement.

Oh yeah you are not powerless in another way as well You have

great influence. My wife has influence over me – that no one else

can. She is my partner for life – and so much more She is often my

greatest advocate. In fact, a year ago, she fought until they

pursued my gall bladder with more vigor. Soon after that, it came

out. Didn't help me much (if any) but it needed to come out – and

she proved she would fight for me. Similarly, she has fought for me

to give up some " freedoms " and we have been able to have " rational "

talks that no one else could have with me (though I must admit that

the use of the cane – and the upcoming use of a wheelchair – are also

due to the " sphere of influence " of others from the SDS group as

well :-)

Anyway, this post is far too long. Thought about emailing it just to

you, but figured I'd go ahead and send it as a response to your post.

By the way where are you located? Both of you could go to a

conference. We're attending the SDS conference in Chicago this

weekend. I'm not sure how much " help " it will be for me, but I do

anticipate (sure hope so anyway) that Donnalee will meet some other

caregivers she can relate to – and start to develop a support group.

So far, she is reluctant to come on here and post. Guess that's okay

though That way you guys don't see my bad side :-)

Well, I'll get off now.

Catcha later.

Pablito (aka )

> Hi folks,

>

> I don't post alot, but I read the digest daily, and print messages

that I

> think would be helpful to Jeff or his doctors. I need some

advice. Jeff

> has gone in to a period where he is very emotional about his

condition. He

> has broken down twice this week (we have been together 6 years, and

I had

> only seen him cry once or twice that whole time-both times within

the past

> 12 months, relating to the disease) He came home from work today

just to

> see me, because he says that he feels like he's getting to the end,

and

> that he feels as though he's dying inside (physically-not

emotionally).

> He's afraid to fall asleep because he's afraid he won't wake up.

I have

> asked him why he feels like this, and he says that physically he's

weak,

> out of breath alot, lightheaded, dizzy, sees things in peripheral

vision

> that are not here. Also, I've noticed he gets sudden sharp pains

in his

> head from his right eye up over the top of his skull and to the

base of the

> neck. He says it feels like an electric shock. It happened

yesterday when

> we were at the mall. He's stumbling ALOT more. He wears the

support

> stockings that go up his calf to aid in the swelling, and hand &

wrist

> supports. He keeps dropping his keys, utensils, cell phone, etc.

Today he

> cried and told me how sorry he was that he's putting us through all

of

> this. We saw the doctor last week and he's ordered another MRI for

later

> this week to see if anything shows up. His last MRI was in January

and was

> mostly inconclusive. Can anyone out there relate to what he is

feeling? I

> can't even begin to imagine what he's going through, all I know is

that my

> husband, lover, friend is hurting, and I feel completely powerless

to help

> him. Since he came home this morning, I've had a lump in my throat

that

> won't go away. Any input would be appreciated. And, again, thanks

to all

> of you for listening.

[Guest guest]

I'm having sharp stomach pains started today after lunch.It's in the

upper top of your stomach.I'm also belching alot.Turn or bend some

ways help but laying down can't.Anyone had this happen to the I'm

little over two months out.Help it really hurt.