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 Falls/leaning 
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Joined: Fri Jun 26, 2009 9:39 pm
Posts: 92
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I guess because I was somewhat overweight, I lost 30 pounds when Lewy came to live with us! If Johnny didn't eat and mostly he wouldn't at first (lost 60 lbs. initially), then I didn't eat either. Now he's thinner than I am, so it is a little easier for me to hold him up when he leans, or to get him out of bed. He is getting stiffer, so I know it probably won't be too long before I need help. I have to wait an hour after I give him his meds in the morning for them to kick in, so he won't just collapse to the floor. He can walk, though slowly, for a mile, but when he stops he may just go down. And every day is different. Sometimes he looks like he has CJD, other days he can walk from room to room and be OK. He has fallen several times this last couple of weeks, once for my daughter, once for a caregiver, and a few for me if I turn my back on him. And keeping him down is hard. He wants to be where I am, so if I go to another room, sometimes he follows. Seldom can he get up by himself, but I hate to make him sit all the time, so... I'm strong though, but aware of what's coming. We have an occupational therapist coming Wed. to see what else we might need.


Mon Nov 23, 2009 6:05 pm
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Joined: Sat Mar 28, 2009 6:01 pm
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Judy,

My husband too can hardly walk. To avoid falls, I insist he use a walker in the house. Perhaps the therapist you mentioned will show your husband how to use it. It's like having two canes, or two people by your sides. There is still a risk of falling, e.g. if he pushes it too far ahead and cannot move his feet forward, or if he suddenly weakens, but it does solve the problem of balance and support. I now have my husband in a wheelchair a lot so that he can be where I am. Who knew that a house would become a one-person nursing home? Good luck,

Doris

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Mon Nov 23, 2009 7:09 pm
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Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
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Mother has a lot of problems with the leaning and lack of balance- a couple of things we did that gave us about another year of walking were a drug called lamictal (lamotrigine) this is an off use but deals with that part of the brain-her psychiatrist prescribed it. - another thing that helped with the leaning was a combination of accupuncture and deep tissue massage (her pain management doctor. as her disease has progressed these are not working as well but we had about about a year of good results
Sharon

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Wed Nov 25, 2009 10:25 am
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Joined: Sun Jan 11, 2009 8:17 pm
Posts: 104
Location: Arkansas
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Thanks Sharon, mom took lamintal for a couple of years, tho a low dose and she sees neur. Mon. I will suggest it to him (new Dr.) He has suggest depakote instead. He wanted to also wait till she made the namenda switch first, which we've done. It is so strange no one seems to know if it is seizures, fainting,or what. The eeg,ekg never is conclusive. Now her bp is ALL over the place. The oxygen does seem to help her rest so much better. I have read that the convulsion and strong jerks can worsen in the late stage of lbd. Anyone else experience them?


Thu Nov 26, 2009 12:09 am
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Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
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Mother started with the seizures or faints about 2 months ago- also the b/p is all over the place. -no idea either
Sharon

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Thu Nov 26, 2009 1:16 am
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Joined: Tue Nov 25, 2008 3:10 pm
Posts: 34
Location: London / Italy
Post Re: Falls/leaning
I have not written for a long time - but I have been visiting the web site every now and then.
The last seven months have been very challenging for mum. She had a UTI infection in January, then some sort of faint one night in February, further to which she stopped walking. She developed fever, we took her to hospital (neurology) to investigate the walking issue and discovered that she actually had developed penumonia. All the brain scans were not showing anything specific which could justify the non-walking. We did not do an X-ray of the legs though. She made it through the penumonia, came back home, and very slowly started walking again. The doctor at the hospital (not her main LBD doctor, who is not based in our hometown) ordered to suspend/drastically reduce all dementia drugs (Exelon and Memantine) and suspended the anti-depressants. He claimed that they are of no use when the illness is advanced. Her main LBD doctor subsequently re-increased the Exelon to 6 mg a day. She was certainly less lucid after suspending Memantine and reducing Exelon, but she was also less anxious, so we waited. We started Sinemet to help her walk. Then at the end of May she had a sudden fall: she was sitting still at the dinner table, looked fine, my dad walked out into the next room for 2 minutes, heard a noise, turned back, and saw her falling, by her side, head first. Did she faint, was it a seizure? We don't know. She broke her hip badly though and had to be hospitalised. While in hospital it turned out that also the other hip had suffered a fracture, a few months earlier, which was healing by itself (THAT was the reason she had stopped walking: she was with a carer when she felt sick at night in February and she must have fallen, but the carer did not report it fully and nobody thought about doing the simplest test, an X-ray...). Anyway this time the doctors refused to operate, as she was too weak - they said to wait and see if the bone would heal by itself, of course leaving limited scope for recovery. She remained in hospital until the beginning of July, with fever and other ailments. They did another EEG, and the result must have scared (?) her main LDB doctor, because he ordered to increase valproate (3 tablets a day), and has walked back from his earlier proposal to increase exelon to 9 mg, because he is afraid it might induce seizures. We have suspended sinemet for the same reason. Since she has started with the increased dose of valproate she has become increasingly drowsy and non-responsive. She has lost almost all lucidity. Once in June I washed and dried her hair while she was in the weelchair and she slept all the time during the process. This hinders any chances of recovery for her movements/walking. I know that increased daytime sleepiness is a sign of the end approaching, but I wonder whether this is partly caused by the valproate? She is now in the weelchair, fully dependent for any physical needs. Because she was so sleepy, we have suspended Seroquel (who would have thought she would ever be able to sleep without it... but now she can). We have just been given permission by the doctor to slightly decrease valproate to see if she "wakes up", on condition that we keep her protected with a safety belt (...how worried is he about these seizures??). We have been very lucky and have managed to take her to the seaside (very hot in Italy otherwise) and I have just come back from a week with her and my dad. So we seem to have had at least 2 seizures episodes in the last 6 months and we (family members) never actually saw one. We don't really know what we are fighting against and how serious it is. There does not seem to be much on LBD and seizures so can anybody offer some guidance? Thank you for your help and apologies for the very long email.
Blessings to all of you in this most difficult journey.


Tue Jul 27, 2010 1:29 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Falls/leaning
Sofia,
Sorry to hear about this decline and the hip fracture. Did you look up the possible side effects of valproate on a website such as rxlist.com or drugs.com?
Robin


Tue Jul 27, 2010 2:16 pm
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Joined: Tue Nov 25, 2008 3:10 pm
Posts: 34
Location: London / Italy
Post Re: Falls/leaning
Thank you for your support, Robin. No, I have not yet been able to search the rxdrug web site; in the information leaflet that comes with the medicine they say that drowsyness and ataxia are both possible (but not frequent) side-effects. A few days ago my dad decided to decrease the dose as the doctor had allowed (so mum is on 2.5 tablets a day), and there has been a slight improvement. I am off again to see them next week - hopefully I will find her a bit more alert. Thanks again
Sofia


Thu Aug 12, 2010 8:25 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Falls/leaning
I hope you have a good visit.


Thu Aug 12, 2010 10:56 am
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Joined: Tue Aug 17, 2010 9:28 pm
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Post Re: Falls/leaning
Hi, Sofia, Just wondering what kine if hip fracture you mom had and what kind of treatment she's getting to help her hip heal. My mom broke her right hip in 5/2009. It's impact fracture, we chose no operation, after 10 weeks bedrest she can walk again. Since June she had a 2 minor falls, no complain about pain or anything, but we do noticed her walking getting harder, on 8/2 after home aid help her take shower, she suddenly can't walk, can't bear any weight on her left leg. We took her to Oth Dr last Wed, X-ray found she broke her left hip, oth Dr ask us took her to ER the same day for Surgery. We decided will wait and see. She's home all the week, my father and live in home aid has been taken care of her, she don't feel pain when sit or lie down. But any movement of left leg cause a lot of pain. Surgery is scheduled for Friday. I'm still trying to see whether there is no-sugical treatment can help her minimize the pain and somehow can bare some weight on her left leg and walk a few steps.


Wed Aug 18, 2010 9:14 pm
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Joined: Sat Aug 21, 2010 9:04 pm
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Post Re: Falls/leaning
Hello all, my dad was diagnosed about a year and a half ago. He's been acting out dreams for 12 years. He's had 5 falls in the last 2 weeks. He's in the hospital now to try Zyprexia. they noticed that his blood pressure drops when he stands and they "think" that's what's causing the falls. He is very stiff. was on Resperidol for the halluc, can't take Sinemet or Seroquel. They make him much worse. After the falling, how much longer do we have? He naps throughout the day and doesn't sleep well at night. I spent the night last Friday and we was up and down 18 times from 8pm to 3 am and wanted to wake my mom every time. Mom has help 3 times a week for 2 hours each. It's not enough.


Sat Aug 21, 2010 10:04 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Falls/leaning
Falls can be an early symptom so they don't indicate the end is near or even the middle is near.

Probably your father needs to be assessed for OH (orthostatic hypotension), which is the drop in BP when standing. There are some meds and non-medication techniques used to treat OH. There's certainly info posted here about OH.

Why was the Risperdal discontinued? My layperson impression is that if people can take Risperdal they can take Zyprexa.

Please find Dr. Brad Boeve's "Continuum" paper from 2004 on lbda.org, by doing a search. It has a treatment regimen for all the symptoms you mention, including sleep issues such as RBD (REM sleep behavior disorder - acting out dreams).


Sat Aug 21, 2010 11:34 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Falls/leaning
Welcome Candf79,
I agree falls can happen early in the illness, my husband fell for yrs and the only way we finally could get relief was when he couldn't walk anymore in the later part of the illness and even at that point he would still try to get up.
Good luck, read and educate yourself on LBD it will help you get through the yrs with LBD.

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Irene Selak


Sun Aug 22, 2010 7:33 am
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Joined: Sat Aug 21, 2010 9:04 pm
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Post Re: Falls/leaning
Thanks so much for the tips and information. I think they are stopping the respiradol because he still has hallucinations. He has gotten worse quickly over the past month. Not knowing he's home and wanting to be taken home, very possessive over my mom. If we come down so she can get out of the house, he threatens us because he thinks we are trying to keep him away from him. He takes cap naps 24 hours a day. Never lays down for more than 2 or 3 hours. The RN at Emory told us that he would not get better. It only gets worse from here... :(


Sun Aug 22, 2010 12:20 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Falls/leaning
Such delusions are very hard to treat. Medication is certainly worth a try.


Sun Aug 22, 2010 12:29 pm
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