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Originally posted by: LCB
Thanks, JAB, I will explore the links. Thanks for your help. You always come through.
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Originally posted by: JAB
Hi, LCB. If you want to research presenilin, the best search engines to use are:
http://www.ncbi.nlm.nih.gov/sites/entrez
http://scholar.google.com/
The first one, PubMed, is more selective. It searches the biomedical literature. It's helpful in that (a) hits are in chronological order, beginning with the most recent, and (b) it will include all synonyms for the key words you use.
The second one, Google Scholar, searches a much wider array of sites, not all of which are terribly reliable. They are not in any particular order, as far as date of publication (although you can use "advanced search" to limit your search to a given span of years), and the search engine looks almost exclusively for the specific key word you enter. Sometimes it will expand the search, e.g., from "Alzheimer" to include "Alzheimer's", but not much more than that. What I like about it (in addition to searching more journals) is that it helps you find copies of the full papers that are freely available on the web. At the end of most "hits", you'll see a pale blue link for "All x versions". Click on that and you'll see which sites have .pdf or html files of the full paper.
There's a new search engine that I haven't played around with much that you could try -- it might even be a good place to start:
http://www.quertle.info/v2/
In theory, it produces "quality results, not just long lists", based on "relationships".
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Joined: 1/14/2015
Posts: 40463
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Originally posted by: LCB
It should not be this hard to get a diagnosis, but at last blood tests have confirmed what I have known for the last 10 months. I posted an update on Could it be FTD? about the dog and pony show necessary to get this far.
March 2, we went back to see Dr. Sherrill, the neurologist. Bill has had ct and mri (2 brain scans), arterial ultrasound, and extensive blood tests. Nothing showed up except in the blood tests. Abnormalities that I don’t fully understand yet, but concern the doctor, showed up and further workup is now in progress. He will have a lumbar puncture, looking for proteins in the cerebrospinal fluid that should not be there.
In the blood, they found a mutated gene or protein, I’m not sure which yet. Presenelin is a gene associated with familial type ad. The doc wrote it down for me to look up. Nothing much in the literature about it, which makes me think this doc is on top of things:
”The researchers led by Ralph Nixon , MD, PhD, professor in the Departments of Psychiatry and Cell Biology at NYU Langone Medical Center and director of the Center for Dementia Research at the Nathan S. Kline Institute for Psychiatric Research, discovered that the presenilin 1 gene performs a crucial biological function that enables cells to digest unwanted proteins and is essential for brain cell survival. The mutations, they report, disrupt this cellular protein-recycling process, killing nerve cells”
I will understand more about this as I research and will post a link.
They also found increased levels of homocysteine, which is treated with a prescription vitamin called Folyx. This is associated with heart disease, but is easily treatable with the rx, Folyx, per the doctor.
The doctor used the “dementia” word and Bill’s reaction was appropriate, I thought. He sat there, looking stunned, while the doc explained to me the necessary tests to come. When he left, Bill stomped around a bit, cursing what “he had to look forward to.” Quietly, I said that he didn’t have to go through it alone. I don’t think it helped much. Then, in the car, he said, “Well, I might as well go to the bank, take out a loan, buy a boat and go fishing.” I said I thought that was just exactly what he ought to do, and I’d go fishing with him. He brought up my son Tony, who committed suicide three years ago March 4th … said he understood him…why he ended his life. That gave me a chance to tell him I agreed with him. “You have got to know that I have no trouble putting myself in your place and I would feel exactly the same way.” That seemed to soothe him.
Yesterday (3/3/11) he woke up earlier than usual. He did not want breakfast but finally ate a bowl of cereal. At my prompting  wml, and he went back to bed. About 11:30 I looked in on him and he was awake, lying there, blankly staring at the ceiling. I suggested we ride over to a fishing place I had discovered on the way back from a trip to Dahlonega I made a few months back. He went for it, and we had a lovely ride over in his pickup truck, which he enjoys driving because it rides so well. We left a turkey cooking in the oven, and on the way home stopped for cranberry sauce. After dinner we watched tv with a sense of togetherness.
This is what I find most amazing. Ever since the doc used the “d” word, and I showed him I am on his side and will be right in there with him, God willing, the 800-pound gorilla is gone out of the living room. We don’t have to talk about it seems, it is just gone. I remember saying to him a while back that we were both scared out of our wits. I was referring to what the brain mri might show. The mri showed nothing but the blood tests did. Now we know what we are facing, at least as much as we can absorb and process,I just want every possible day to include fun, love and laughter. It’s us against IT.
He gets upset if anything is moved, just like always, but he has pretty much stopped blaming me for the way he feels, and the affection between us has returned. Just a gentle touch seems to reassure him - at least for now. I have learned enough so far to realize the roller coaster ride ahead, but we have already been on that ride for the past 10 months, when I realized for certain that he had a problem and he had to get out of that big truck and off the road. (He called me last May from Augusta and said he was supposed to be in Macon, and he did not remember driving there. That was it. Medicare or not, he had to come in for everybody's sake, as well as his own. But Medicare kicked in in July 2010. I advise everybody to have a plan to take care of deductibles and co-pays. What a blessing for both of us, as I have the same insurance, along with my own set of health issues, COPD etc, all made worse by worrying about him.
We may never get a definitive differentiation as to which type dementia this is, but the doc is putting him on Exelon soon, after he sees the spinal fluid.
Sorry this is so long, but I am happy to report progress, instead of always complaining that he would not go to a doctor.
Bless you all for being here.
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Originally posted by: LCB
quote: Originally posted by jfkoc:
LCB...so nice to hear some "good" news. It give me encouragement.
JAB...I have no idea what you said but I sure feel better that you knew how to say it.!!!
jfkoc, I had to laugh when I read that about JAB. Makes me feel better too.
From the heart, JAB, I appreciate your ability to guide this tour, and if we miss a few of the finer attractions along the way, so be it. (Maybe my med student grandson will be able to help also. I have not told him or anyone in the family about this, except for my youngest son, a best friend.)I have started at page 469 and am reading backward all of your posts, since 2008. BTW, how is your husband now? I haven't caught up to that yet.
Yesterday I talked to a 40-year friend, who saw her ex-philandering-husband with AD through to the end in Hospice. I wanted her to know what a gift it is turning out to be to have watched her practice forgiveness and gratitude throughout that whole ordeal. Yes, gratitude. Still working on that one.
DH was content yesterday to sit and watch tv while it rained. Gave me lots of research time. I have the laptop in the same room with him, and as long as he can't see the screen, he is content to have me there. These times are precious, I know. I have to practice saying Thank You, for everything (good, bad and indifferent).
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Originally posted by: JAB
Heavens, woman ... you're going to get soooooooo bored!  There's a whale of a lot of redundancy, answering questions from newbies.
My husband, bless the dear man, is a total sweetheart. He did very well until parkinsonism reared its miserable head a little over a year ago. Now he has a lot of difficulty moving around, and everything wears him out. He still goes with me when I run errands, but we walk reeeeeeeeally slowly and I take along his rollator just in case he suddenly poops out and needs a place to sit, and we have to rest up for a few days in between excursions. He's still very loving, thanks me all the time for every little thing that I do, and is surprisingly communicative for stage 6e. He is still good company.
That reminds me. I haven't seen this mentioned in a while. If an ADLO has trouble getting around, get a handicapped parking placard from your DMV. Really, it makes all the difference in the world. (And you get to park free in lots of places that would otherwise charge for parking, too.)
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Originally posted by: jfkoc
LCB...so nice to hear some "good" news. It give me encouragement.
JAB...I have no idea what you said but I sure feel better that you knew how to say it.!!!
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Originally posted by: DLMifm
JAB how do we clone you !!
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Originally posted by: LCB
JAB, I don't even know you but it makes me very happy to know your DH is still good company after two years (or however long). Mine is getting to be very good company since we have faced the IT, at least somewhat.
I miss the conversation but at least the affection is back. It has been several years since we could converse like adults. We used to do the same job so we had a lot to talk about.
I have the parking thing because of my copd. He is still physically stronger than I seem to be.
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Originally posted by: JAB
quote: JAB, was he ever nasty?
No. But he also seemed to be totally oblivious to his problems. Your husband seems to have more awareness. I'd think that having some insight into his losses would be terrifying and frustrating, and lashing out because of that would be understandable. And now that he knows what's going on, and that he can rely on your love and understanding, he's not so afraid any more. I've heard of that happening quite often.
You know, while my husband didn't consciously recognize that his brain wasn't functioning well, he was quite stressed out trying to hold down a job etc. Once I found out what was going on (he was really very good at compensating, and it took a long time before I realized that his problems were really serious and insisted that he see a doctor), and we received the diagnosis and I relieved him of his responsibilities, it was like a huge load had been lifted. He stopped struggling to do things and let me take over anything he was having trouble with ... and his symptoms improved, a lot. That load he was carrying may have been like your gorilla.
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Originally posted by: JAB
Five and a half years since the diagnosis.
We used to work together, too, and never ran out of things to talk about. Sometimes, now, I'll talk about issues related to our former work, and he just loves to offer suggestions. He loses track of the topic, but he enjoys it so much, it makes me smile.
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Originally posted by: LCB
Yesterday he had the lumbar puncture - finally. It was doubtful that he would go through with it every minute right up to him sitting down in the procedure room. I promised him this was the last test. No more poking and prodding. I'm coming around to "it is what it is" -- and he is still denying it is anything.
He stayed up all night long "pushing caffeine" per his discharge instructions, to avoid the headache common with spinal taps. Now we wait for the results. See the neuro March 30.
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Originally posted by: jfkoc
Hope no headache!!!
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Originally posted by: LCB
JAB, was he ever nasty? I am desperate to believe that mine's nastiness will not return and this gentle side of him will remain. I have known of lots of people who did not get beligerent and combative, but lots where it has gone the other way.
My job right now is to relax and accept the gifts of today and say thank you.
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Originally posted by: Jim Broede
I meant it for you. You have the makings of an elite care-giver. Because you know how to love. Even in difficult times. That's a sign of true love. The world needs more lovers like you. --Jim
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Originally posted by: Jim Broede
You seem to be a master at exuding good vibes. You are an optimist. Not a pessimist. Your husband needs to be around people like you. You have the makings of a very good care-giver. An elite care-giver. Sounds like you really love the guy. --Jim
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Originally posted by: DLMifm
quote: Originally posted by LCB:
Thanks, jfkoc. No headache, but now some of the old cantakerousness has returned and he is telling his family some pretty tall tales about how they are sticking needles in him over something that might happen in 20 years. They act like they believe him, but no one has asked me.
Grrr...
The wonders of confabulation <big grin>
It would be terrific if someone compiled all the confabulation posts (i.e. stories) on the forums. There are some wonderful and funny ones.
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Originally posted by: LCB
Thanks, jfkoc. No headache, but now some of the old cantakerousness has returned and he is telling his family some pretty tall tales about how they are sticking needles in him over something that might happen in 20 years. They act like they believe him, but no one has asked me.
Grrr...
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Originally posted by: LCB
Jim, except for that part about really loving the guy, I have to wonder if you didn't mean this post for someone else.
It is okay if you did.
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Originally posted by: LCB
Jim, you must be a very sweet spirit to be so nurturing ...
bicoastal, I have mixed emotions about seeing the neuro about the results... I'm already dreading that ride home. I will read the Alice book. Thanks for the tip. Did your dh have that "esoteric" blood draw. That's the word the pcp used, in justifying the need for yet another blood test. He said the neuro runs some pretty esoteric tests, and he wanted a plain ol' blood test, to check cholesterol, etc.
I will try to get a written report on the lumbar so I can share them here. You do the same (if you care to, of course).
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Originally posted by: biccoastal
LCB, My DH had lots of blood drawn but I don't know what they were looking for. They did tell us there was nothing remarkable about the results. DH is 74; his mother and her father and several relatives on his dad's side were diagnosed with dementia in their 70s, so, although his is probably familial, it is not early-onset. We were told spinal fluid might contain beta amyloid proteins which would rule out FTD and confirm AD. Please do share what you hear on that front and I will do the same.
DH has been on Aricept 2 months with no perceptible change. Neurologist vaguely mentioned other possible meds but we don't see him again until late April. Should we be asking about Exelon?
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Originally posted by: biccoastal
Good news! My DH gets lumbar puncture next week - it took 3 months to get the appointment and we were told it will take another month for results - so I share your frustration about diagnostic delays and uncertainties.
I just read the novel Still Alice and recommend it; among other things, it included a discussion of AD genetic issues that you might find interesting.
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Originally posted by: LCB
quote: Reply to this discussion
Today we see the neuro for test results and dx. Will report what we learn.
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Originally posted by: LCB
I'm in shock.
The nurse lost the results of the lumbar.
When we were leaving she found them.
Doc had moved on to next patient.
I demanded to know what the test showed.
Doc stuck his head back in and said everything's fine. No cancer.
Cancer?
Do you laugh or cry?
Long story shorter, fighting for control, I made the nurse give me copies of everything.
The one thing we did learn before we found out they had lost the results (the doc assumed he did not have the lumbar puncture)... was that, according to the ACER mask, he has severe sleep apnea. He is scheduled for a full sleep study.
The visit was not a total loss.
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Originally posted by: LCB
quote: Originally posted by biccoastal:
LCB, My DH had lots of blood drawn but I don't know what they were looking for. They did tell us there was nothing remarkable about the results. DH is 74; his mother and her father and several relatives on his dad's side were diagnosed with dementia in their 70s, so, although his is probably familial, it is not early-onset. We were told spinal fluid might contain beta amyloid proteins which would rule out FTD and confirm AD. Please do share what you hear on that front and I will do the same.
DH has been on Aricept 2 months with no perceptible change. Neurologist vaguely mentioned other possible meds but we don't see him again until late April. Should we be asking about Exelon?
The dr. did not mention Exelon again, nor any other medicine. My head is still spinning I'm so upset with this doctor's office.
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Originally posted by: biccoastal
Wow. No cancer, huh? That is so disturbing. Maybe it would be worthwhile to specifically ask whether the cerebral spinal fluid had Alzheimer's-type proteins.
Is sleep apnea a potential reason for all the problems you've seen or is it an additional but separate cause for concern?
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Originally posted by: jfkoc
It is frightening how frequently these medical glitches happen. When my husband was in the hospital several years ago his chart was lost twice!!
The base line is that no one is staying on top of things except YOU. I firmly believe that we need to keep a notebook with copies of all tests, lab work and Drs notes. It is the only way to insure that the medical history is complete.
I applaud your speaking up and not screaming up.
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Originally posted by: jfkoc
Dick has sleep apnea also....had an overnight study done..got the machine...will not use it!!!!!
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Originally posted by: LCB
Yes, the sleep apnea is a separate issue, but one that no doubt contributes to his other problems.
The dr. actually suggested that I make a notebook and keep it with me.
I am figuring out how to read the reports. The spinal fluid is the least understandable because I have no experience in this sort of thing. But I am learning, like the rest of us.
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Originally posted by: LCB
What is EECP?
Re the mask: even a couple of hours is better than nothing, and maybe it will become more. I finally believed them when they said I was a fool to try to get by without wearing it.
Your post gives me hope, but let me run this by you. What I would not give to have him back like he was, but now I'm not sure I can ever be like I was. Right now I'm feeling like I can't go back, and I'm not sure anymore that I have it in me to go forward. Have you (or anybody reading this) ever felt like that?
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Originally posted by: jfkoc
Dick does not snore. Re the mask...how much could it help if one just wears it for a couple of hours.
I too have spent hours on Google. I often wonder why I should have to know this much. Sometimes I take articles with me to Dr appts. Some are better than others with this. One actually says he learns a lot from his patients. Mostly thing medical relating to Dick but not theri field.
NO...we will never be through searching. It took me two years before someone decided to stop three meds (even after 5 bleeding ulcers and ten days in the hosp.).
Our young internist out of town did this and suggested EECP. Dick has gone from sleeping @14 hrs every night and even then hard to wake up. He improved after the removal of first the Namenda, then the Aricept then Zoloft. We continues to improve with the EECP. He has completed the forth week but I noticed a difference after two weeks. Now everyone has noticed a difference.
The short term memory is still shakey but other then that he shows some resembelence to his old self. I am having some very good days. It can happen.
So many things can look like dementis or contribute to it. I went crazy on the computer when I found out that Parkinson's can be a factor.
Thanks for the statin info. I will also research.
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Originally posted by: jfkoc
I have felt every kind of way you can imagine. I know all of this has changed me and for the better. That said I would give up the "better" and not have these problems in our lives.
Not certain what EECP stands for. One lies down and has large"blood pressure" cuffs from about the waist down. They sync up pressure with the heat beat and it physically forces blood into the body.
It is FDA and medicare approved for inoperable heart conditions in the U.S. but other countries use it foe VD, diabetes and some research is being done for Parkinson's. It is not a cure...just a treatment. Google it and tell me what you think.
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Originally posted by: LCB
Ok, I looked it up and continue to be amazed at the wonders of modern medicine. And you are saying EECP has helped his dementia? And does he also have Parkinson's?
Did you go to Cleveland Clinic?
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Originally posted by: LCB
jfkoc, does he snore? Bill does not snore, yet the dr. said this was the worst case he had ever seen. I was diagnosed 10 years ago and it has taken me this long to get comfortable in the mask. I've had many types, and finally learned through trial and error that trying to adjust it too tightly makes it impossible to leave on. When I loosened it considerably, I started making it for several hours without ripping it off. I am sure they will find Bill also has PLMD or Restless leg. I have PLMD.
I hope my experience will help Bill learn to tolerate the mask. I have now learned there is a direct connection with untreated apnea and dementia. Also researching statin-induced dementia. He takes simvastatin.
Been looking up every symbol and dr. notes. It is amazing what you can learn on Google.
He has gone to visit his son and I am enjoying the quiet research time. Will a time ever come when I can stop obsessing on trying to help him, and just get back to living life as it comes day by day?
I never dreamed a diagnosis could be so hard to come by. We are coming up on a year since I first admitted to myself there was something very very wrong.
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Originally posted by: LCB
Number 6 is major...oh, that's wonderful.
Mine can give you his opinions on Nascar, basketball, and politics, but that isn't exactly a conversation.
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Originally posted by: jfkoc
Here is the change...
1. He wakes up
2. He wakes up in the morning
3. He is more active
4. His color is better
5. His humor is better
6. We can have a conversation
7. Sometimes recalls that his driver's lic. has expired
8. Puts dishes in sink and empties dishwasher
9. Takes trash out
Here is what is the same
1. Will not exercise
2. Will not watch diet (denies being diabetic, some one told him years ago he was pre-diabetic
and he isglued to that.
3. Thinks he can still fly
The improvement started with the removal of namnada, then aricept then zoloft. After a month he started celexa and anothe month the EECP. The imporvement has come after each event. I am crossing my fingers and enjoying the moment.
I will look up that gene tomorrow
AGAIN NOTE TO ANYONE READING: AD never diagnosed
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