RE:(msa) Lita> :(

[Guest guest]

Lita:

Could you tell I should of been in bed last night, instead of up posting? I'm

sorry , I kept talking about what you said to , but calling you

and I know it was you that I wanted to talk about. All I can say is the mind

wasn't working right. Had the Grandson () the night before instead of

Hannah to watch. It's the first time his stayed the night without one of his

brother's with him. His only four and was scared of the dark, turned the

light on for him, but still was scared , so I stayed on the bed with him.

Between the few times I was up with Fred and then waking me up every

hour to aske " Is it morning Yet " I didn't get but this much sleep . The only

reason I was up last night , instead of in bed, I had one of my headaches and

couldn't sleep, so came in here to read and saw what you said to .

Really sorry for calling you . Last time I'll stay up pass my bed time.

Really. Please forgive the mistake.

Hugs Vera

In a message dated 10/22/2001 4:07:51 AM Pacific Daylight Time,

shydrager writes:

<< Message: 14

Date: Mon, 22 Oct 2001 01:45:30 -0400 (EDT)

From: LitaHaarer@...

Subject: Re: hello alll

,

You have a tough road ahead of you but if you really love him I say

hang in there. I just lost my husband nine months ago to this SDS/MSA.

He got diagnosed five years after we were married. He was not sure what

was wrong but noticed when he was playing tennis that his coordination

was not what it use to be. We went to the doctor's and at first they

said Parkinson's . He was very upset when we got home from the

doctor's. He went downstairs and I went to start dinner. When I went

downstairs his first question to me was did I want a divorce. That had

not even come to my mind. But he said he didn't want to burden me to

have to take cae of him. There was no way I could or would have

abandoned him in this time of crisis. I told him I was and would be

there for him till the end. A year later they said it was Shy Drager.

I searched and searched for information on SDS so I could be more

informed on this disease. It wasn't until I found this email group and

got to know patients and caregivers that were going through this

challenge in their lives. I made friends and we talked and shared our

stories. There are a lot of friends that I made that are no longer

around but their spouses still continue to be involved in this group.

There are a lot of new patients/caregivers on this list that will share

their stories with you.

My husband was sick for nine years. At first it was balance and low

blood pressure. There was impotence which really upset my husband. I

was his third wife and he had nine childred from his first marriage. So

being impotent was terribly hard for him. But that did not make me stop

loving him or wanting to be with him. He found that hard. He was a

very proud man Always very well groomed and dressed. He had trouble

dressing himself. He went from a cane, to a walker, and finally a

wheelchair. He would fall and would not be able to get up without help.

Then he lost control of his bladder and had to start wearing depends.

And started losing control of his bowels. He also started having

trouble writing. He would write very small. Eventually he couldn't

write just scribble. He also had tremors and spasms in his legs. He

had a hard time getting the fork/spoon to this mouth. He couldn't cut

his meat I had to do it for him. Eventually I had to feed him. And he

eventually was not able to talk clearly. It was very slurred and hard

to understand You had to listen very closely and I sometimes had to

have him repeat what he had said. I had a hard time convincing him that

he couldn't stay by himself any longer. He fought me for sometime. We

got a physical, occupational and speech therapist to work with him.

Excersise is very important. I finally got a home care worker to come

in and bathe him and take care of him while I was at work. He didn't

like that because it made him dependent on someone. He had good days

and bad days. On a bad day he slept because he was tired. His normal

temperature was 95 to 96 degrees. He didn't sweat so when he did sweat

he usally was running a fever. We had to watch for urinary tract

infections and get him started on antibiotics. right away. We had

several trips to the emergency room. He did not like to go to the

hospital. But we had to be on the alert for any infections especially

UTI's and pneumonia. In May of 2000 I noticed blood in his BM. We went

to the doctor and they said it was a fissure. But two days later when

he had diarrhea his depnds was soaked with blood. I took him to the

hospital and they said he was bleeding internally and they had to give

him transfusions. They admitted him and did a colonoscopy and

endooscopy (excuse my spelling). They found out he had a tumor in his

colon that was bleeding and it was cancer. I was devastated. Wasn't it

enough that he had SDS but now this. He had several transfusions and he

was very weak they wanted him to get stronger before the operation but

the bleeding got worse. I was so afraid that he would not make it. But

he did. He had surgery and they got all the cancer. While he was in

surgery he got a cathethar in his bladder that drained into a bag.

We got him home and he made a slow progress but it was great to him home

after being in the hospital with him for a month. Every time he went in

the hospital I stayed with him. The nurses were always busy and

couldn't understand him when he talked to them and he was not able to

ring for the nurses so I stayed there with him. Sleeping on chairs and

sometimes an easy chair or cot. I was there for him. He got UTI's and

we got antibiotics. In December he was not feeling good and we did have

a nurse coming once or twice a week to check on him after he got out of

the hospital. Getting ready for Christamas I asked him what he wanted

for Christmas and he said " you " . I didn't get a good feeling at

Christmas because he was so tired and we had changed the antibiotic

because it didn't seem to be working.

New year's Eve was quiet he was not feeling well. On January 6 and 7th

he was running a fever off and on. By the 8th he was worst so we took

him to the hospital. He had aspirated pneumonia. They did a swallow

test on his birthday (11th) and they said that he needed a peg tube

because food/fluids were going in his lungs due to swallowing problems.

He refused the peg tube and said he did not want to eat or drink or take

his medications he wanted to go home. The doctor said there wasn't

anything else they could do, take him home and call hospice. We took

him home on the 13th. Hospice came on the 15th to get him in the

program. He got worse every day was not eating or drinking. Hospice

brought in oxygen and morphine. I asked them how long they though it

would be. They said they did not have a crystal ball. It could be

weeks, months. Not until Friday when they told my daughter to call the

family because they thought he would not make it through the weekend.

The family started arriving. He got scared at one point seeing every

one around him and the nurses rushed and gave him morphine and he went

under. I personally think they over medicated him. He was not in any

pain at that time. I could tell when he was in pain and he was not in

any pain. He was scared seeing his family around his bed. But after

they gave him the morphine he closed his eyes and looked like he was

sleeping. This was Friday afternoon on the 19th. He died on Saturday

the 20th. My son and daughter, his three daughters and his caregiver

were around his bed when he took his last breath. I told him I loved

him and would be okay. I bent down to kiss him and he closed his mouth

and kissed me back. I think about that last kiss and think of the good

and the bad times we had but if I had to do it again I would do it. He

was the love of my life and a wonderful husband. I never let his

disease get the best of us. We fought it the best way we could . And

at the end I was there just like I had promised. I wondered if there

was anything I could have done better or differently but I did the

best I could at that time. He is at peace and no longer suffering. I

am happy about that. There are more stories that I am sure that you

will hear. No two stories will be the same. Everyone has different

symtoms at different times.

It has been nine months and a lot has happened. His mother passed away

in May and I just lost my mother in July. My dad had a heart attack,

stroke and seizures two days after my Mom died. We thought we were

going to lose him but he recovered. He just went through a 10 hour 5

bypass heart surgery and he just got home this weekend. Unfortunately

they were not able to operate on the anuresym that he has in his

stomach at the same time. But he is a very strong and stuborn man. I

thing I get my strengh and stubborness from him.

, I wish you luck and if if there is anything else I can do for

you let me know. There is a long and challenging road ahead of you

but if you love him I am sure you will take one day at a time and deal

with it one day at a time. Support each other every step of the way.

There will be times when he will push you away but let him have his

space. Enjoy life the best that you can. Although I have had many

challenges this year it has made me a stronger person. I look back and

reflect on everything that happened to us the past 17 /2 years or our

life together (13 1/2 of those as husband and wife) and I know that love

helped us through the hard times.

God bless you!!

Hugs,

Lita Haarer (wife of Ralph E. Haarer deceased 1/20/01)

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