Can someone let me know if this is normal part of Alzheimer's. My husband has been sleeping most of the day (after sleeping at least 7 hrs. at night - he is also having trouble with his balance. He is very afraid of falling all the time - he is very unsteady on his feet. He has been complaining alot about pain in his feet. I took him to podiatrist last week and there really isn't anything wrong with his feet.
I'm feeling very down and not sure what I should be doing. I'm home from work today. He is usually in daycare 5 days a week while I'm at work but these past 3 days all of the above have been happening and just seems to be getting worse and worse. He is confused and I have to show him where to go to the bathroom. This is so sad to me and just downright depressing. Is he entering a new stage?
Mar, have you considered that he may have a UTI? Some times when an LO goes down hill quite suddenly there is something medical going on and a lot of times it is an infection somewhere.
Either that (Sandi is right, you should have that checked out), or possibly dehydration.
The complaints about pain in his feet ... he may be trying to tell you about another problem, but not know how to express it. Perhaps it's "code" for being dizzy or lightheaded, which makes him nervous about walking. Maybe he has an inner ear infection?
divvi is a great code breaker ... divvi, whatcha think?
Balance issues and excessive sleepiness are typical of Lewy Body Dementia. Hallucinations are much more common with LBD. The treatment is similar to Alzheimers, in fact the Alzheimers medication may work better for LBD, but there is a different and longer list of medications to avoid. Many antipsychotics and some medications for reflux and urinary problems can cause severe problems.
I had him checked with our Primary Doctor, last week our Cardiologist, we are in a clinical study and the neurologist has checked him out and they all say he is strong. He is very sweet and ever so thankful to me (he always tells me this). I'm going to call the Neurologist today and let him know about his sleeping and balance problem. I don't think he has an infection (but you never know.) He has a hernia which I had scheduled a doctor's appointment today but the weather is blizzard like so we will not be able to get there today. Sometimes I think it's these damn clinical trial pills. It is a situation that damn if you do and damn if you don't. I didn't give him the pills yesterday morning to see if there was a difference and to be honest, he was a little worse yesterday. So I gave him pills this morning.
pamsc. My husband has been on galantamine hydrobromide and memantine HCL. Sometimes I wonder if it is Alzheimer's. I'm going to read up on Lewy Body Dementia. Although his hallucinations are very short lived and just started very recently. I wonder.
Let me add that he has a terrific appetite so he eats well. He never hesitates to take a shower (although I have just gotten a shower chair to make it easier) - I have to help him dress but never complains.
He is very honest with me - when I ask him about pain etc. he will tell me. He still communicates (the best he can.)
Sunshyne, he is on ELND005 (Elan Pharmaceutical). (formerly AZD-103) Scyllo-inositol, is being investigated as an orally administered treatment for AD. ELND005 may prevent or inhibit the buildup of anyloid protein in the brains of AD patients. It is randomized-double blind placebo controlled study.
I don't think it is doing us any good - he seems to have gotten worse. What if I were to just stop altogether? Will he go downhill faster? Or will he be a bit better?
Mar: Those are meds that are good both for Alzheimers and LBD. But even with the good meds it is a balancing act. My husband takes Sinemet and Aricept (in the same class as galantamine hydrobromide). The Sinemet helps him move but can make cognitive issues worse. The Aricept helps the cognitive issues but makes the movement worse. He cut his Aricept from 10 mg to 5 because he was having balance problems and reports that his balance got better with the reduction.
Mar, that drug has gone through "several" Phase I's, using a total of 110 healthy subjects. The safety profile was very good. The FDA granted the drug "fast track" designation, "based on a favourable safety profile and good pharmacokinetic properties in phase I studies as well as compelling preclinical data published in Nature Medicine which showed noticeable effects on pathology and function."
Which doesn't mean that the safety profile will be the same in AD patients, of course.
On the flip side, your husband could be on placebo.
I assume that your husband had to have been on a stable regimen of the galantamine for several months before the trial started, which makes an adverse side effect due to that a bit less likely.
Also, I assume your husband has AD, not Lewy body, so he would not have the same issues that pamsc's husband faces. Lewy body patients often have motor control issues since LBD is apparently related to Parkinson's.
I think I'd start with checking for a UTI. And I'd talk with the neuro before adjusting his meds.
i agree dont play with meds until your neuro says reduce and how to reduce them. sudden withdrawals can cause more issues. if he has been stable up til a few days ago, then new symptoms started, i would start as suggested with a urine check to rule out UTI. you can buy a home strip test at pharmacy and see if its positive then call dr and they will do another full blown uti test - this bladder infection can cause AD persons quite the upset and very strange behaviour issues. I would also get him into check that hernia asap. they are very painful if its inguial? in the leg groin area its quite painful and will impair his walking too. my DH had one of them and he could barely walk at all, and super painful. his was repaired soon after we found it and hes been good since with that- your poor guy if its that he needs surgery to repair that asap. too, his meds could be producing balance issues. best to call the dr and discuss all the above and see what they suggest. good luck, divvi
ps sinus and or head colds can lead to balance issues to -we have that some.
mar - regarding the pain with his feet. My dh has complained of the bottoms of his feet feeling like he is walking on marbles for several years but is seems to be some better now and I have no idea why. Anyway, I have 2 cousins complaining of the same thing. I have had him to 2 poditrists about it and they explained it as the fatty tissue in the foot joint shifting and wearing down (I guess like knee and hip problems) and when he steps down there is no cushion. He recommended the softest shoe inserts to add cushioning. I have replaced all his insoles with the most cushioney I can find. He used to walk from throw rug to throw rug etc. to avoid the hardwood or tile floor. In our new house I used laminate with a cushiony padding to help with his feet problems. Try this, when he is sitting down examine the soles of his feet and apply some pressure and see if it hurts. My dh cannot stand for me to do that although it is not as bad now as it used to be. If that is his problem it could account for some of his balancing problem.
Every thing I read about LBD makes me think that is what my DH has. The only thing that throws my thinking off is the parkinson's issues. My Dad did have Parkinsons so I am familiar with the systoms. He does shuffle when he walks, has the hullucinations (in fact that was the first indication that something was wrong) sleeps a lot and has a balance issue. He does at times get that fixed look on his face that Daddy had but shows no sign of tremors. He eats very well although he cannot remember the names of the food he is eating. He does remember Pecan Pie and Icecream and it's a must have everyday. Thank the good Lord for Mrs. Edwards frozen pies. Living in a small town does not give me the resources to really get a positive diagnosis. I have discussed the LBD theory with our family doctor and he agrees that it could be.
Thank you all for your input. I'm going to have his UTI checked to see if there is an infection. His hernia doesn't seem to hurt at all. I push on and he says there is no pain but I'm going to have it checked again. As far his feet - lmohr, you hit the nail on the head - that is exactly what the doctor told us last week. He has very high instep and his fatty tissue in the front of his foot is gone. I have tried to touch his feet but he says it hurts too much. I'm going to soak his feet tonight and put cream and maybe that will make them feel a little better. He does use the soft cushions - dr. gave us new ones last week.
I cannot thank you all for your research and input. I'm hoping now that he does have an infection that is causing the walking problem. Bama, my husband does shuffle alot when he walks.
Very strange. i have always esp? 'detected' when DH had a uti..dr office called and no uti! i dont know if i should be relieved or not:) DH's been acting strange lately. sleeping way too much i guess its just the disease..sigh..one less worry for a bit anyway! whew.. i am now thinking he may had a touch of the stomach bug going round which is quite prevalent here instead-. something was up for a while. just dont know what..divvi
Bama: My husband didn't have a tremor initially--not all people with Parkinson's have tremor, particularly initially. Are his movement problems enough that Sinemet might help his quality of life?
he was demonstating over the weekend signs of uti, andhe slept the afternoons like a baby. i loaded him in the car to take specimen this mornin and he fell asleep so hard in the car,he leaned down into the back seat..i was quite alarmed he never does that. so i took him home and allowed him to sleep for 2hrs. then he ate a good lunch and gave him a pint of ben/jerrys for dessert and said have at it! that got him up and hes up and getting into his hooligan stuff as i type..who the heck knows whats up anymore..all i know it wasnt uti! a blessing in disguise..:) but even for him quite bizarre- will watch and observe -maybe its over. Divvi
mar, your husband could be on placebo. How is the trial designed? Will there be an "open label" stage where everyone gets the "real thing"? Because there seems to be quite a lot of excitement about ELND005 ... I haven't seen very many "fast tracked" AD meds. So if he'd start getting the med at some point in the trial, I'd keep with it.
What are the rules about starting a new med if you're in the trial? Often, they'll allow that once you've been in the trial for a while, and if they do, you could add the Axona. The mechanisms of action are very different.
If there's no open-label and they won't allow new meds to be added, and your husband has been in the trial long enough that you think he should be showing some signs of response if he were getting the drug, then you might want to think about dropping out. Talk it over with the neuro.
Bama, from what I've read recently, LBD and Parkinson's are related, but the patients may be anywhere on a continuum from "pure" LBD with none of the motor control symptoms, to "pure" Parkinson's with none of the dementia symptoms. Pity the poor patients in the middle, with the worst of both... That's what my father finally concluded was going on with my mother. But back then, it was the very rare doctor who had ever heard of LBD.