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 muscle spasms 
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Joined: Sat Dec 05, 2009 7:24 pm
Posts: 34
Location: Northern Minnesota
Post muscle spasms
My husband is in the nursing home, and due to the Lewy Body, was unable to follow direction in therapy, to rehab after the broken hip. so is off Medicare, and we are now responsible for the cost of his care, we do have long term care insurance, which is taking care of about 79% of the cost.

He is having muscle spasms, frequently, which frightens him, and I think makes his legs and arms ache. He is very ridged when I try to exercise his arms and legs.

Do you know of anything that he can take that would help with the muscle spasms. He was on 25 MG of seroquel, and clonazepam which they cut out because of the spasms. Since cutting out the seroquel his hallucinations are much worse, he begs me to take him home, even when he is not sure who I am. I am not sure if the medications were the cause of the spasms, although it is a side effect of the seroquel. Cutting it out has not made any difference, in the frequency or how severe the spasms are.

Aany insight any one may have would be greatly appreciated.
Mary 73


Thu Mar 25, 2010 12:16 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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My *guess* is that the meds weren't causing the spasms and the Klonopin (clonazepam) may've been helping them a little.

It's worth testing for Vitamin D and magnesium as these can cause muscle cramps. (A PT told us we were dealing with spasms or spasticity. And MD said no, these were cramps.)

These spasms or cramps are extremely hard to treat. You can try: massage, quinine (not sure this is still available under FDA rules now), baclofen, Sinemet, Dantrium (this helped us greatly), and Klonopin. Next would be narcotics such as Fentanyl and methadone.

If you do a search on "Dantrium," you'll find a few posts that talk about the same symptom your husband is experiencing or a similar symptom. You may get other ideas from those posts. The symptom described is usually associated with pain, unfortunately.


Thu Mar 25, 2010 12:30 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3331
Location: Vermont
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Hi Mary - sorry, I can't help you about the muscle spasms but I was wondering if you could tell me who the LTC insurance is through. My dad's pays the equivalent of 3.5 days a month of his care, and when he bought it years ago he was told it would pay almost all his LTC. NOT! We are thinking about purchasing it for ourselves and I'd love to know who your co. is if you are willing to share that info. Thanks, and I hope you get your muscle rigidity problem solved soon. Lynn


Thu Mar 25, 2010 10:30 am
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Joined: Sat Dec 05, 2009 7:24 pm
Posts: 34
Location: Northern Minnesota
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We have a policy with Continental General, a subsidary of Great American, you can check with them, but I am not sure that they are still offering a long term care policy.

One thing I can tell you is to make sure you get a tax qualified policy, and check to see if your state has a Long Term Care Partnership with the Insurance company. There are quite a few states that do, and what that does is if and when you would have to spend down, the amount of money that your long term policy paid, is the amount of money that you would spend down to. For example, if you had $100,000 insurance, you would only have to spend down to $100,000. You should check with your own state on that, I may be wrong, but that is how I understand it.

We have had our policy for almost 13 years and with the inflation fighter, it has grown so it covers most of the cost. At least I believe it will, I know what it will cover for home care, and that was to be 50% of what it would cover in the Nursing home, I should find out for sure in a few days the claim has been approved, and I should get the first check within a week or so. We were also fortunate to have taken out a policy that is unlimited in how long we can colllect. My husband is healthy except for the Lewy Body. He could live a long time if he has his mother's genes.

Many of the policies out there are for 2 or 3 years, which in most cases is enough, but we have a relative that has been in the nursing home over 5 years now, and the guy in the room next to my husband has been there 9 years. If you can get an unlimited one think about it, it will cost more and they don't seem to be writing them much any more.

If I was taking out a policy today, I would go with one that paid at least $150.00 per day to start, and I might even opt for one that paid $200 a day if you could get it. You also want one that will cover home care, assisted living, premium waiver, you do not want one that has a cap on what it will pay if possible especially if it covers both of you, and one ends up using all or most of it.
If you go on line and put some time in learning about the different options with different policies you should find something that you are happy with.

Mary 73


Thu Mar 25, 2010 11:27 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3331
Location: Vermont
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Thanks for your very in depth reply Mary. My parents took out policies in 1986 and supposedly got the best that was offered then. It has a 10-year cap (I can't imagine my dad will live that long given some of his medical issues). It only covers $750 a month out of $5,400, and we still have to pay almost $1,200 a year to keep it! What a rip off! My mother paid into it for 11 years and never used a dime of it. I should own an ins. co. or ALF or NH! LOL!
Thanks again. I'll work on that when I get some other stuff done for my dad and get back home. Lynn


Thu Mar 25, 2010 8:01 pm
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Joined: Sat Sep 22, 2007 5:53 pm
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Location: Texas
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My husband had muscle spasms/cramps. He takes tizanadine(zanaflex) and it has stopped the spasms.
Lorraine


Thu Mar 25, 2010 9:26 pm
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Joined: Sat Dec 05, 2009 7:24 pm
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Location: Northern Minnesota
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Thank you Lorraine, I will tell the Doctor to check that out and see if he can order it for my husband, the spasms are really miserable for him.

Mary 73


Thu Mar 25, 2010 9:32 pm
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Joined: Wed Aug 05, 2009 11:17 pm
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Thanks to Lorraine, we starting using the tizanidine on my Mom about seven months ago. It has been a wonder drug for her. She was having terrible muscle spasms that were preventing her from getting any sleep. The tizanidine starting working right away, about every 3-4 months we have to up the dose a half a pill a day. It calms the spasms quickly. The other thing that was a welcome surprise with tizanidine is the side effect of having a dry mouth. Before we put Mom on it she was drooling alot, now she doesn't drool at all. Amazing, a side effect that was good.


Fri Apr 02, 2010 10:24 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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This is something of a red flag side effect for me. Usually if a side effect of a medication is dry mouth this means the medication is anticholinergic, which is a big no-no for LBD (or any dementia). You might check with a neurologist or pharmacist to see how anticholinergic Zanaflex (tizanidine) is.


Fri Apr 02, 2010 11:22 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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Cheri, As I read your post I wrote the med down that has helped your mom in two ways. :D Frank has NON-STOP drooling. My furniture is a mess and he's always soaked. BUT, then I read Robin's reply, guess I'll continue to stress over the drool, I find this is most difficult part of the disease to deal with. :(

Wishing everyone a Happy Easter!!

Take Care,
Gerry


Sat Apr 03, 2010 9:09 am
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Joined: Wed Aug 05, 2009 11:17 pm
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I don't know if I understand the anticholinergic Robin posted - But what I do know is my Mom's heart rate is good, she has no constipation, blood pressure is good. As far as memory problems and loss of coordination the LBD took that away long before the tizanidine. Before tizanidine my Mom suffered with muscle spasms terrible, the Parkinson med she was on didn't do anything. Then we tried Zyprexa, Namenda, Effexor,and my Mom got worse every time they tried something new. My Mom was drooling on everything as Gerry said, including me every time I had to pull up her pants in the bathroom, her hands were always soaked with drool because she was always wiping her mouth. If the tizanidine isn't causing any of the heart, or blood pressure problems. She is finally not in pain with muscle spasms and it's the only medication she is on seems to me it's a wonder drug for my Mom.


Sat Apr 03, 2010 11:29 am
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Joined: Sat Dec 05, 2009 7:24 pm
Posts: 34
Location: Northern Minnesota
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I have written down the name, and will be asking the doctor about this, the spasms frighten him, and I am sure that his arms and legs ache due to the spasms. He needs something to help him.

Mary 73


Sat Apr 03, 2010 2:12 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3331
Location: Vermont
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For those dealing with LOs who drool a lot, could you tie something loosely around their neck like a bandana or cotton scarf so it would catch some of the drool? If it were something like that and you called it their scarf (instead of a bib) perhaps that would help at least a little? Or, perhaps you've already tried it?


Sat Apr 03, 2010 5:29 pm
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 118
Location: Dumfries Va
Post Drooling
LTCVT, That is what I do is put a towel under her chin. My LO drools only on the left side. Since I have had to have it propped up because of the Vertigo, it has helped a lot.


Sun Apr 04, 2010 10:22 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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Frank moves around a lot and leans forward a bit so the drool just streams out and lands on whatever he's leaning over. The drool isn't just normal saliva, it's like egg whites and very slimmy. It's hard to understand that swallowing can be that difficult, I've noticed it getting worse. We did try botox injections, it didn't lessen the amount of drool but it wasn't slimmy. Thank you for the suggestion.
Take care,
Gerry


Sun Apr 04, 2010 10:19 pm
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