To me, and I think,many others of you, this site has become like a lifeline. Only friends, going through the same trials we are can truly appreciate how much we endure as caregivers. Some days we have no face to face conversations to boost our spirits and we know we can always log on to this site and talk to someone who truly understands our pain.
It is very important to talk about our problems as it helps keep our sanity. I truly love this site.
Imohr, I feel the same as you about this website. I read a lot but seldom have the opportunity to contribute - My husband likes to have me in the same room with him. Right now he is napping and I am browsing the message boards!
My husband turned off the electricity this morning to fix some outlets that weren't grounded. I don't know if they weren't grounded or not, (why now?), but I sort of went into withdrawal not to be able to access this site.
I read alot but don't write in, however, the past few days have been really tough. I''ve been crying and crying. DH has Lewy Body Dimentia. We've been doing ok. I left my job to take care of him about a month ago. In that month, I see how much he struggled alone and that he is getting worse week by week. He has a terrible time walking, parkinson-like,memory is shot and wants to sleep all the time. I think it's the realization that this is really happening to us. I sign in just about everyday and have gotten alot of help from you all. I know this doesn't get any better and I think I'm just grieving our 46yrs together. Thanks for being there, no one knows what this is like until you walk in it. I know you all understand. You are my LIFELINE to sanity.
I was shut down for a few hours when G accidently knocked things around...I felt withdrawal pains! Thanks heavens I was able to at least get my system up and running again so i could get back to everyone here.
Kitty, I was also concerned about letting your husband work on outlets. I am not sure how far along your husband is though. I guess when he turns the breaker's on if something is not connected correctly,they will not stay on.
PatB, I thought of that, but again, anything to avoid conflict. I never use that outlet in the bathroom anyhow. He uses it for his razor. I use the other for my hairdryer. Maybe tomorrow I'll be posting about a husband who got electrocuted while shaving. I can't stop him from doing any of this stuff. The last house inspection noted that a KITCHEN outlet was not grounded, but he hasn't touched that.
I remember the time a few months ago when the digital clock in the bathroom was flashing, & I told him the electricity must have gone out. He said, no, he was checking out the outlet since I told him it had problems. I had never mentioned any problems. ?????
Oh, and if you haven't heard from me in a week, please check & see if a house burned down in Richmond, VA. Thanks. Kadee, your comment was a comfort. I know nothing about electricity, he turned the breakers off to do the "work" & if you say they will not stay on if something is not connected correctly, I can sleep tonight.
Nancyt, my husband (64) has Alzheimer's, but my father (78) who lives with my Mom further south in Florida has Lewy Bodies Dementia. She is always hoping for a site specifically for Lewy Bodies, although I tell her that the 2 diseases are very similar.
My husband has been diagnosed as Parkenism with dementia and AD. The Neuro doing the testing at first thought he had Lewy Bodies but because he didn''t have acting out dreams and Hallucinations he didn't have Lewy Bodies.
Imohr, I don't think my DH has Lewy Body either, since he doesn't have hallucinations or acting out dreams. But he's been on sinemet for parkinson's and no response. The neurologist said there are several combinations of dementia but he thought this was the diagnosis. I hope he's wrong but as other's have said I hate the thought of further testing. The treatment is about the same. DH is on Excelon patch and started Namenda 2 weeks ago. I've googled Lewy Body, but there really isn't much about it.
amy husband is not on any Parkenson disease because his demention is worse than his Parkenson. He is on Arecept, Namenda, Wellbutrin, Celexa, Neurotin and pain meds and muscle relaxant for the spinal stenosis. Originally he was on some meds that didn't work for him and sinement may of been one of them. Whatever they were gave him the bad dreams and hallucinations, incontinence at night, etc.
My DH is also diagnosed with EOAD and PD. His tremors are getting worse on the right side, both arm and leg. Drs also felt it could be Lewy Body, no hallucinations, but does have wild dreams and alot of jerking at night when he is asleep. We see a new Neurologist in Sept as the one we were seeing has moved out of state. At what point were your DH's started on meds for the PD? Wouldn't it be nice to have a simple blood test that correctly diagnosed with no guessing and med trial and error!
Imohr, what kind of pain meds is your husband on for the spinal stenosis? My DH has that also and is in constant pain. It's inoperable and can't be fixed. He has epidurals with cortisone which helps some but can't have them often enough. Over the counter meds don't help so he's on hydrocodone which is addictive and constipating. Heat packs and cold packs also help some. I just wondered if there is anything out there any better than what we're doing that could replace the narcotics.
Dazed No meds that we have tried. We are using Vicadon 1 or 2 times a day and 600mg. Ibopropen between. I can't tell if the Vicadon does any better than anything else. He is in almost constant pain also. He also can't have surgery. He walks all bent over from the waist like a clock hands at 2:30. He had the shots like your husband but they did not work. The Doctor says he can't stand straight because of the stenosis. Now when he walks his face if looking at his feet. He looks like a gorilla.
this site is truly a lifeline for me. it is getting harder now for me to be able to get on the computer ,as dh follows me and doesn't like me out of his sight. i truly do not know what i would do if i didn't have you all. thank you joan. jav
Yes, Imohr, my DH is bent over like that and I can't tell if some of his symptoms are from the constant pain, the pain meds, or from the AD. When there's no cure for either one, it's especially bad. I think we could deal so much better with one if we didn't have the other.
Dazed, I know exactly what you mean about telling where the symptoms are coming from. You are the first person I have talked to who has all the bent over symptoms. I think we are in stage 6 now at least partly. My husband has been having small output of feces several times a day and has to use a panty liner. I was reading on Google last night that that is fecal incontenence. I did not realize that. He still uses the commode but has to do a lot of wiping and sometimes with my help. Takes him forever in the bathroom. They said sometimes it is treatable so I made an apointment with our GP week after next to see what he says.
Anyone else with the spinal stenosis or this type of fecal incontenance?
My 88-year-old husband is bent over with stenosis and was in constant pain until they experimented and found that 1000 mgs. of Tylenol at mealtimes and bedtime keep him relatively comfortable. That is 4 grams of Tylenol, the maximum recommended dose. Before that they had him on anti-inflammatory meds and narcotics, which have side effects and didn't control the pain as well as this regime of Tylenol does. He has 50 mgs. of Trazodone at bedtime and a low dose of Seroquel (I think that's the right word: it's often mentioned on this forum and is a mood changer). The secret seems to be that with the regular dosing off Tylenol, the pain does not have a chance to get out of control. It took about a month of experimenting to come up with the right combination of drugs. Love you all. Mary
Mary, that's interesting that the Tylenol works better than anti-inflammatory meds and narcotics. I understand from my doctor that aspirin can also be taken in between doses of Tylenol. I think we'll give this a try. He's been on 800 mg of Lodine plus 10 mg of hydrocodone. I know large doses of Tylenol are not good for the liver but the other meds are not good for the stomach and brain either. I''m not familiar with Trazodone. Is that a pain med or sleep med?
Imohr, my DH is not as far along as yours (He's about stage 4 with some stage 5 symptoms but he also has bowel problems...mostly constipation with several small movements. I think this is caused by the narcotics.
Dazed, it's not a good idea to give aspirin when your husband is on Lodine. To quote RxList.com:
When Lodine is administered with aspirin, its protein binding is reduced, although the clearance of free etodolac is not altered. The clinical significance of this interaction is not known; however, as with other NSAIDs, concomitant administration of etodolac and aspirin is not generally recommended because of the potential of increased adverse effects.
Mary That is interesting and I think we will try it. I called the Pharmacy and he seen no problem with taking 2 extra strength tylenol 4 times a day as long as he doesn't take the vicadon too..
Trazodone is a mild antidepressant whose chief benefit is giving as close to normal a sleep as any medication (I am quoting a doctor at a Pain Clinic here in one of Vancouver's teaching hospitals.) It mimics the stages of sleep of REM etc. and does not cause problems of confusion that some drugs do, such as Zoplicone. My husband was on Hydrocone in the hospital and found it hard to tolerate: he had vomiting and constipation, and, believe it or not, it was not controlling the pain well. He had had a triple decompressive laminectomy in 1990 and was told at that time that the calcium deposits that had caused the stenosis would build up again in time. There is a congenital factor involved in his case, too; his father had the same problem. Anti-inflammatories don't work as well for him; the pain is caused by direct bony pressure on the nerves by the calcium deposits and not by inflammation in the soft tissue. When I visited him today at 2:30 p.m., he complained of pain in his shoulder, and I noticed that one 500 mg. of Tylenol had been left on his bedside table, and I got him to take it. That means that he only took half of his breakfast dose, and the nurse hadn't noticed. The two 500 mg. he takes at lunch in the dining room were not enough to catch up to the pain that had built up. When I phoned him this evening, he said that the pain in his shoulder had settled down. I took a refresher course in nursing in the 80's before I returned to nursing after raising a family. The "gateway"theory of pain was being taught at that time: in essence, it says that once the gate is opened wide by uncontrolled pain; it's hard to get it shut again. Love you guys, Mary
Dazed, I've been on Lodine for fourteen years, so I am a teeny bit familiar with it... :-)
I have herniated disks that are putting pressure directly on the spinal cord in my upper back. Much too dangerous for them to operate. The neurosurgeon recommended that I try anything but surgery, "even acupuncture." So far, the lodine and a brace are controlling the pain. (This is good ... I go very green at the sight of a needle.)
Have you considered trying acupuncture for your husband? I've heard that sometimes it can indeed help when nothing else does.
Sunshyne, my DH has been on Lodine for about that long also. It just doesn't help enough with the pain. He also wears a back brace when walking. We haven't considered acupuncture but we did try numbing the nerves in his back to see if Facet Rhizotomy would help. It didn't so we didn't go ahead with frying the nerves.
After the stress of two hurricanes in two weeks my back was screaming. I couldn't move without yelping. With mixed emotions I tried acupuncture. Whoever said it doesn't hurt is wrong. There I am lying on my abdomen with a gazillion needles sticking out of my anatomy. I am alone in the room and my leg starts to really itch. Just grin and bear it. I hurt just as much that evening. Forced myself to go back for more torture (didn't know I'm a masochist did you). Lo and behold-less pain. Every session was painful but after a month I was pain free. Would I do it again-absolutely.
Hmmm.....Bluedaze, do you have spinal stenosis, muscle pain or arthritis? Trying to determine if this might help DH. Tylenol is not working too well today. He just went back to hydrocodone.
Dazed-very old spine injury (when I was still a student nurse). Low disc herniation which sometimes causes pain down to my toes. I try very hard not to take narcotics. Parafone Forte works for me but I don't have spinal stenosis which I know can be brutal.
Dazed. I give my AD husband Nortese Forte (sp) for back pain. It is an old muscle relaxant that my whole family uses when we have back pain but just for a couple days. My husband's Doctors says it is ok but more apt to cause confusion than some of the newer ones.
The newer ones they recommend are not generic and he is already in the donut hole and the Nortese doesn't seem to make his confusion any worse. I started him on the 1000 mg. of tylenol at noon today.