Old 11-27-2004, 09:12 AM #1 (permalink)
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Default Exaggerated Startle Response?

has anyone else experienced this? i've always been startled very easily. people love to come up behind me at work to make me jump? however now it's riduculous. every time the dog barks i almost leap out of my skin. last week it made me spill a full glass of red wine all over my white shirt. yesterday it made me spill my black coffee all over another white shirt! yeah, i know, i should stop wearing white shirts
has anyone heard of this before?
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Old 11-27-2004, 10:43 AM #2 (permalink)
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Default Yeah, I hear you

Hello, my name is Richard, and I am new to this board; I startle easily as well.....I just refuse to fill my wine glass as full (darn, that startle-reflex) There is not much you can do 'cept try to overcome it but trying some little 'hit and miss' techniques
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Old 11-27-2004, 11:26 AM #3 (permalink)
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Hi Debbie. I love those people at work. They used to put firecrackers in a garbage can next to you at work when I was working. Think that doesn't make you jump?
What you have to do is always have your glass etc. pointed away from you. When they play their little jokes on you, throw your drink all over them. The pokes will stop real quick.
Count yourself lucky that you don't wet your pants when they do it. I hear that is not much fun. Actually that reminds me of a funny story. My wife of 34 years and I had just started going out and I had loaned her my car (cloth seats) When she came to pick me up at work there was a piece of cardboard on the seat. I said what the heck is this and threw it in the back seat sat down and drove about half a block and noticed my butt felt damp. I stopped the car got out and looked at the seat. She started to cry her friend in the back started to laugh and I stood there with a wet ass and a puzzled look on my face.
Apparently they had been driving down the road and Lee's friend shouted out the window at someone they knew on the sidewalk. This startled her and as they were on their way home to go to the washroom she didn't make it.
I was a lot more understanding about things back then. We all laughed and I put the cardboard back and got the seats cleaned on Sat. So I guess a little wine and coffee isn't that bad.

You could always get one of those no bark collars for the dog. They work. Have a nice weekend. Al.
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Old 11-29-2004, 09:07 PM #4 (permalink)
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oh al! i can just imagine poor lee's embarassment! i always cross my legs when i have a belly laugh, or cough, or sneeze, or.....
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Old 12-04-2004, 08:44 AM #5 (permalink)
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Hi DebbieD
Yes over reaction or startling very easily is part of this disease, I believe it's all tide in with the over active reflexes and emotional control. For me that was one of my first signs something was wrong, my advise is get use to it and adapt to being jumpy .First tip if you are able to hold drinks in your hand don't, pick it up when you want a drink then set it down. It may prevent a few messes.Anyway there is my 2 cents worth on the subject, spend it wisely
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Old 12-04-2004, 01:05 PM #6 (permalink)
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hi jim! thanks for the advice! i do tend to hold on to whatever i'm drinking.
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Old 12-04-2004, 10:58 PM #7 (permalink)
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I am not as ALS patient, but I am a full time caregiver for my husband. He has several symptoms of ALS, but the Neurological specialists claim it is not full-fledged ALS. They call it an 'unidentified lower motor neuron disease'. However, he now has '0' use of his arms & hands, and likely will not be walking much longer. To make matters more difficult, he is now reaching the acceptance and depressive stage. (I almost wish he would just go back to being angry & in denial, but oh well!) His first symptoms occured almost 2 1/2 yrs ago with weakness in his arms.

Anyway, I must admit that I am extremely sensitive to being easily startled by the silliest things that never ever bothered me before. I was usually 'like a rock'. He does not startle.

Last year with the onset of symptoms and tons & tons of tests, I became rather unglued with the whole family & myself, but not intentionally. (Over 80 medical trips last year!) The family forced me to see the doctor and he put me on Effexor. Now I am stable once again and can handle most everything, but it does upset me to see my husband depressed. He was always a 'rock'. I try to cuddle and comfort him, but it doesn't always work. He feels useless and thinks he is a burden to everyone. He also will not go out anymore, partially due to fears of falling, but he also thinks he is 'on display', which is nonsence. His friends love to see him.

Our true friends drop by frequently, and others just aren't sure how to handle this. It has made everyone take a hard look at life, as they are all in the same age group. This is the first time that I am aware of a disease of this nature occuring in our small rural community.

Our 29 yr old son was in denial for a long long time and buried himself in the family business. Now he is coming around more, and a visit from his kids is the highlight of our day. Our 27 yr old daughter accepted it much better and dropped her engineering so she could come home and also help with the family businesses. Now she is living on our farm, making numerous improvements, and looking after our show horses. She and her dad were always exremely close, but now he seems to pick fights with her. It is hard to see them so distanced. Hopefully this is just a phase. She is also on meds to deal with this. The truth is that we are the ones on the drugs, and he only takes tylenol! I would trade places with him if I could. He was a classic workaholic, and sitting around is so hard on him.

(I worked in hospitals for over 20 yrs, so I am handling this reasonably well for the time being.)

Any advice ?
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Old 12-05-2004, 12:49 AM #8 (permalink)
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Hi snowbird. I'm not sure what to tell you other than just take one day at a time. That is what we are trying to do. I'm losing my hands now. Haven't been able to do up my own pants in a couple of weeks now. Still can hold my glass of wine though. I've got not much of an appetite but Lee my wife eats when under stress.

I feel like crap some days and just wish I could crawl into a hole and die. I have to force my butt out of bed and I go outside every day. I can still walk and haven't fallen yet. I just tell myself it is better outside. -5 here tonight so it is getting a little cold for that but most days I try. I used to work a lot as well and it is hard to not be able to do the things I used to do.
Asking for help to do up your coat is more of an embarrasment for a guy than being on display. I understand how he feels. Some days it bothers me and some days I say to hell with people let them stare. It's not easy and it takes a bit of practice. If the depression last for too long it might be time for some meds. I know he won't want them but try to convince him it's for his and your good.
The thing with the daughter is probably part guilt on his part that he can't be dad to his little girl. I know this one because I feel it about my 30 year old little girl. She is married an R.N. and an Advanced Care Paramedic but to me she is still my little girl. I'm sure he is the same. Don't know if my little blurb here will help but at least you'll maybe realise you are not alone. We are here to help if we can. Don't be a stranger. Al.
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Old 12-05-2004, 01:04 AM #9 (permalink)
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Hi Al!

Thanks for the tips and the insight. I cannot imagine what you brave fellows are going through. I have had 16 fractures in my lifetime, had my life flash before me once, and I've had 2 children. None of that was anything like what I am seeing and reading now. Visitors make my husband the happiest. He is TOTALLY dependent on me, and resents any other help. I give myself lots of pep talks, pray a lot, and try to be supportive and brave. I am happy to help, but the non-relief is hard.

My husband has had about 7 IVIG treatments, and he seems to worsen drastically after them. Anyone else had that experience?

Also, he had 6 months of Chemo last year for Mantle Cell Lymphoma.

Snowbird*
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Old 12-05-2004, 12:13 PM #10 (permalink)
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I had 2 IVG treatments each lasting 8 hours. Didn't do me any good but boy did I get a bad rash about 4 or 5 days later. Within a few more days I looked like a cooked lobster. The skin on my face was peeling off in little chunks like dandruff. And the burning and itching were unbearable. It took about a week to clear when they finally got the right combination of creams. Needless to say I didn't do that treatment again. She was treating me for what she thought was Multi Focal Motor Neuropathy. Then she said try the chemo drug Cytoxan. Did that for about 8 days. Foot swelled up pain was unbearable again so quit that. Went back to my neurologist and told him that 3 out of 4 doctors say ALS so I think I have ALS so send me to the Clinic at Sunnybrook. And here I am today. I first saw the neurologist in Oct. 03 and he diagnosed me in 4 days after EMG and nerve conduction. I had symptoms (fasciculations and weakness and wasting) for the 10 months previously. The clinic did an MRI and all the other tests again and said sorry about your luck You're screwed. Not quite what he said but you get the drift. So I live day to day and today I am sore as hell. We went to an open house for an hour or 2 and ended up staying 5 hours. Think I stood too long and my arm and shoulder are sore today. Lee says it shouldn't be from holding a glass of wine that long because I am used to that. lol Guess I was having a good time. It is good to be with friends especially this time of year. I know you are tired but have you got your tree up. My wife and daughter are Xmas maniacs. Decorations everywhere. This does tend to cheer me up even though I am a Bah Humbug kind of a guy. Might make a difference with your husband. Al.
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Old 12-05-2004, 02:07 PM #11 (permalink)
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Al...
Sounds like the treatment was/is worse than the disease!

Snowbird...
With regards to your husband.
What is his passion in life? What is his reason for getting outta bed everday?

It is difficult losing the ability to do basic things for oneself...I know that firsthand.
But if he can identify his 'passion' and has a reason to get outta bed, and if he can indulge that passion and find ways to participate. I would imagine his anger/depression would quickly fade away.
Can he contribute to the family business? (Coming up with ways to improve the business...perhaps)
Can he help with the show horses somehow? (Might not be able to shovel manure...but get him in the barn and who knows.)

All of us PALS have lost the ability to do things we once could, but we hafta adapt. For many, it's the mental limitations we place on ourselves (rather than the physical) that cause us to be unable to do...
Dr.Stephen Hawking has few(if any) physical abilities, but has managed to write numerous books, star in an episode of Star Trek TNG, and continues to teach...Why?

If your husband can find (or has ) his passion (and can find a way to indulge), he will have more confidence and rely on you less to do EVERYTHING for him.

Passion is not JUST wanting to 'Live'...but Living with a reason to wake up everday and participate in the world around you.

Everyone has a passion...the key to living, is finding it.
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