Old 10-13-2004, 11:05 PM #1 (permalink)
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Default Leg spasms/cramping End of Life

Hi there,
I am a caregiver and am wondering if anyone knows what drug has been useful to alleviate severe leg cramping or spasms during end of life?Morphine seems to be not very effective. Baclofen is already in use but not effective either. Thanks
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Old 10-14-2004, 12:10 AM #2 (permalink)
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Default Leg spasms

My GP has given me a drug called ENDO L/C. It is Levodopa/Carbidopa 100/25 one tablet 3 times per day. It is a Parkinson's drug but he says he has had good success with it for leg cramps in other patients. I am his only ALS patient and have just been given the drug so don't know if it is working yet. Might be worth asking your Doctor about it.
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Old 10-22-2004, 08:43 AM #3 (permalink)
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HI,
About leg spasms, my husband has the spasms where his leg shakes totallly out of control where you have to try to hold the legs because they shake so vigoursly out of control your afraid he is going to hurt himself or shake right out of his wheelchair. It is something fairly new to us and his doctor lessened the dose of baclofen after this has begun due to sleepyness. Does anyone now much about the sleeping part. My husband seems to sleep more often now.
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Old 10-23-2004, 12:19 AM #4 (permalink)
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Hi Moe. Not sure of your husband's length of time with the illness but you say he is in a wheelchair so I would suppose he has been a while since diagnosis. From what I have read on the subject and speaking from my situation I would say that sleeping longer is normal. Most of the people I have met with ALS have trouble getting more than a few hours at a time so they tend to sleep longer but do not get as restful sleep as would be expected.
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Old 10-23-2004, 04:34 PM #5 (permalink)
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Hi Moe,

About the sleeping part. My brother has ALS and lately he has been sleeping a lot more during the day. I think it's related to his respiratory rate. He does not use a bipap or ventilator (he does not want to). The exchange of oxygen and carbon dioxide is less than perfect, so there is a lot more CO2 in his system which would make him sleepy. It's like slowly poisoning yourself with CO2. Now a BIPAP would probalby help get rid of the CO2 for him....He's next visit to the ALS clinic is Nov 8, we'll know more about his "breathing" at that time.
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Old 10-23-2004, 10:21 PM #6 (permalink)
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Hi everyone,

Hope everyone is doing alright. It is pouring rain out right now here. Better than snow I guess! That will be soon enough. Henry is all over the board lately with his sleeping patterns. he never used to nap or sleep during the day, now the past few weeks, he is napping during the day or after supper. He does sleep well at night now. He is either hot or cold. So I am either pulling the covers off, or putting them back on. He has many pressure points now because his legs do not move well at all any more. His back, hips, neck and arms get very painful during the night, so I am shifting this or that during the night. I do not get good sleeps anymore either. We run the feeding tube at night, and that alters his body temperature as well. The doc says that this is normal. His lung capacity is low, around 35%, but he does not like using the bi-pap machine. It really bothers him. So, that is his choice.Of course with this low function of capacity, he is more tired. My grandmother passed away today. She was 95. What a glorious life she had. She lived on her own until last November. She was a wonderful woman, with many stories of her life and experiences. She will be sorely missed by us all. Anyway, I just thought I would check in with you all. Tbear, are you keeping busy as usual? Fisher, get ready for the snow. Al, have you jumped out of anything lately? Your skin, pehaps? ha... Keep up the activity, it will keep you young! Jane, how are you doing? Well, gotta go get Henry ready for bed. Have a good night all. much love.....

Carol

PS. Kim, my outlook is down, don't know why, getting it fixed this week, will talk to you then. love ya..
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Old 10-24-2004, 08:23 PM #7 (permalink)
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Hello Carol, It is good to see you here again, I am sorry to hear of your Grandmother's death. She had a long life. I am sure she will be missed by many who loved her.
We have been busy moving Mom into a long term care home (her choice) I think it has been good for her, she is brighter, eating better, and more at ease.
Just have to finish cleaning out her apt.
Sis has pretty much lost her speech, can still get the drift of conversation most of the time but much is unintelligible. Getting a communication device in a couple of weeks. Balance is getting iffy, wish she would use her walker! Water is a small problem when swallowing but other things still go down well and she is eating well too. So have to be very grateful for the pluses and be thankful for the strength to deal with the minuses, So glad to have this site....it is wonderful for info and also moral support. Perhaps we can set up a time and get together in the mean time please take care Jane

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Old 10-25-2004, 12:05 AM #8 (permalink)
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Hi Carol and everyone. Very sorry to hear of your Grandmother's passing. Got to Kitchener for the weekend for a visit. Next week is the National Symposium. Anyone else going? Not much else new. Not sure if the Levodopa is working for the leg spasms. Had a pretty rough couple of nights. I think it's rained here everyday for a week. Just miserable. Makes it hard to get motivated to walk. Had the Community Care Physio-therapist come last week and she suggested that I get a walker. Haven't stumbled or fallen yet and seem pretty steady still. Her idea is that with the walker I'll be able to walk further than without it. Not sure if I'm ready for that one yet. Had the snow blower serviced so I guess I'm ready for winter but I hope it waits a while. Hope everyone is rooting for Boston. Their pitcher Curt Schilling and his wife support ALS to the tune of about 5 million so far. Any team with a guy like that deserves a World Series. Just my opinion. I may be wrong. But what the heck. Won't be the first time. Anyway Take care everyone.
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Old 10-25-2004, 03:02 PM #9 (permalink)
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Carol - so sorry to hear of your grandmother. I'm sure she was an inspiration to all who knew her. Must run in the family!

Hope everyone is doing fine and if you have sun outside today, rejoice!

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Old 10-25-2004, 04:22 PM #10 (permalink)
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Hi All,

Curt Schiling is already a winner in our books, he is such an inspiration to so many. He is already a world series winner here in the Deboer home. Hope they win though. Jane, I think that is such a good idea with the chat gathering. I think we should pick a day, set a time, and for 1 hour, do the *****. I think that it would be such good therapy for us. Not that I have anything to say! Or that anyone listens to me! Oh, that is just here at home and at work ha..... Good idea, lets launch it.

Stay Strong,

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Old 10-25-2004, 06:04 PM #11 (permalink)
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I think a live chat would be good. It is a good way to get to know each other better.

Carol - How far from London do you live? We will be there this weekend. Any chance of meeting you in the flesh? Email me when you're up and running. Or, reply here if you want.

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Old 10-25-2004, 06:37 PM #12 (permalink)
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Default Hello Everyone

I'm glad to hear you are interested in getting together to chat. What time is most suitable for everyone.
Evenings are best for me say about 8p.m.
Carol you are right about Curt Schilling, Did you see the picture of his shoe with K ALS on it. Knock out ALS.
Also a lady in the States is selling red rubber bracelets for a dollar the proceeds go to American ALS. Wonder if ;we could do that here. We need all the dollars we can get. Love Jane
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Old 10-25-2004, 07:40 PM #13 (permalink)
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Hi Al(l),
I recall many sleep challenged nights and can sympathize with your nocturnal agenda. If it isn't getting up to help with the bathroon stuff, it 's to rotate positions. Carol, you probably already know how imortant it is to avoid Henry getting pressure sores. They can take a lot out of him and are hard to fix later.

Hope its possible for you guys to get together in London... on the other hand, from Michigan Melissa, you'd probably pass by Sarnia to get there or back anyway.

Fish... it's time to come in from the deck! Must run to rescue my burning chicken.
G'night all!
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Old 10-25-2004, 11:52 PM #14 (permalink)
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What's this I hear about a meeting in London? Is everyone invited to this party? It's only 2 hours for me and it would make Lee happy because I have been promising her to take her to visit her Aunt in London. Good idea to keep her happy. She might be emptying my bed pans some day. I have also been reading about the bracelets on the Living with als website at yahoo groups. Sounds like it might be a good idea to raise awareness and funds.
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Old 10-26-2004, 08:25 AM #15 (permalink)
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Hi everyone,

Carol I'm very sorry to hear about your grandmother. Hope you are doing okay. It's great that she was so independant for so long and had such a wonderful life!

Fall is definitely in the air here today. Won't be long till the snow starts to fly I'm sure.

Take care everyone,

Go SOX Go !

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