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Friday, May 20, 2016

Life with Lee and Maggie and bvFTD - Guest Post By Cindy

I came into this relationship with full knowledge of Lee's illness from the start. He was very open and honest about it, and told me all about it on our first date. I did all the research I could, but really didn't find a lot that wasn't on his blog.
Together on vacation in New Orleans in November, 2015.

I knew when he stepped on my porch the first time that I wanted him in my life. I decided after the “research” that his bvFTD didn't matter. I was willing to take him as he was, and for as long as we had. That was October of 2011 nearly 5 years ago. According to our first talk he should have been gone by now.

There have been changes but not as severe as I had anticipated in the beginning. Most of them seem to be subtle until you look back to the beginning. When I say the beginning it is the beginning of our relationship.

I will not say it is easy, but love really can overcome a lot. REALLY!

I see the same changes Lee has mentioned and more. For instance: Anger management is top on the list. Getting motivated is right up there as well. Sequencing, and what I call “hermit mode” - When he hides out in the bedroom in the dark for hours at a time.

Patience has never been one of my virtues, but it certainly has come a long way in the last 4 years. I have always been a very structured and scheduled person. Well that has gone out the window.
Day to day would seem pretty normal to most people. But then what is normal? Before I go to work in the morning just like anyone else, I kiss him goodbye. I always honk when I pass the house so he knows I have left. His sleep is very irregular.

We may text throughout the day and make tentative plans, they are tentative until they happen. Some days something as simple as going to get milk is a challenge for him.

I am learning how much to push him to do things as simple as wiping off the kitchen counter. He is “always” right. It does not do any good to tell him different. Or prove him wrong. But then he is a man, you know. At this time he is in the “hermit mode” as I write this. I really miss our time curled up watch smarmy movies.

The next issue is when he is absolutely sure he has told me something, and he hasn't - and vice versa. I have considered taping our important conversations, but I am not ready for that yet.

He is one day at time, and I am plan! Plan! Plan! ahead at least a week. I have said all this to say -
Everyday every person is different. You each must make your own plans, and ways of coping with bvFTD.

Love is the key to making the best of the time that you have. Secondly, talking about what is happening, and how you personally will deal with it and the changes taking place. Trust! You must have total trust in each other. You also need some one you can talk to about what is happening. I had 1 session with a counselor who specialized in Alzheimer and it helped a little. He had done some research on bvFTD, but mostly talked to me about care giving and memory issues.

As I said, "Love is the key." We enjoy each other a lot.We laugh often. We work in the yard, and share the household chores like cleaning and cooking. We hug, and snuggle on the couch watching TV. We still hold hands when we go shopping. We try to act "all grown up" when we have to. We will not let this disease take over our lives. We make the best that we can of each day.

Maybe I will go into more detail the next time I write.

Feel free to ask me any questions and I will try my best to answer them ...From a fiances point of view,

Cindy

Monday, May 16, 2016

Six Years Living With bvFTD 2016 Update

Grillin and Chillin! This picture is a couple of years old, but I think it sums
up the decision making problems associated with bvFTD.  Yes! This was posed, but still...
It is that time of year again when I try to write a progress report of sorts on the progression of my bvFTD. It has been six years since my diagnosis. Six years! The average life expectancy of someone with bvFTD just happens to be about 5 years after diagnosis. With that in mind, I am doing well. If that looks familiar, it is because I copied my last update from 2015. I am having a very difficult time getting myself motivated to write (or to do anything else!), so I cheated. Call it a work around. Besides, most of what I wrote then applies now, only more so.

I am worse-off now than I was 6 years ago. My disease is progressing, but so far it is still progressing slowly. I had really hoped that my case would fit the criteria for what is called Phenocopy bvFTD, however I have way too much progression. That is my self-evaluation, but probably a very accurate one.

I had an awful time with doctors this past year. So many people have had difficulties with being miss-diagnosed, and I had a doctor say that I was suffering from depression rather than dementia as recently as last summer. The ignorance in the medical profession knows no bounds. Part of the difficulty is that most of the tests for dementia are developed to diagnose Alzheimers rather than bvFTD. Since different parts of the brain are affected with FTD it appears that nothing is wrong because a person with Frontotemporal Degeneration does better on the tests than someone with Alzheimer. Of course the tests do not measure the areas where the difficulties from FTD occur. After all this time it was a very frustrating experience. I was very frustrated. Cindy was very angry. It was like talking to a brick.

One of the most ignorant assumptions I have had to deal with is that neurologists give a test to ascertain a baseline I.Q The test is a list of fairly complicated and unusual words. The problem with this is that the speech centers and vocabulary are heavily impacted by FTD which obviously invalidates this test. I was told that the highest my IQ had ever been was 115, and that there has been no change. I have taken several standardized IQ tests in my lifetime, and have never tested anywhere near as low as 115. The arrogance of the medical profession answered this with, “Those other tests must have been wrong!” Of course they would never admit that the test they just administered may be flawed when testing someone with bvFTD.

Yet another test asks you to name as many animals as you can in a given time. I have the equivalence of a Masters Degree in biology, and am a Certified Naturalist. Because I could name as many animals as a “normal” person, the fact that I was having difficulty thinking of some animals names was discounted. Yep! That doctor actually said that I was fine, and that nothing was wrong because the tests didn't show any significant deviations from normal. I fired the dumb bitch. So! I am currently without a neurologist, though I have a few referrals. I am in no rush. My regular doctor retired, so I just changed again. I should know in a few months if I made a good choice. Well, I used to be really smart. Now. Not so much!

My dysexecutive syndrome and cognitive problems have progressed slowly but surely over the years. I always use my ability to do mental arithmetic as a way to measure. I simply cannot do mental math any more - more precisely I don't bother because it is so difficult. When I try it is like wrestling with tangled thoughts like wet spaghetti - numbers slip away because I can't hold a number in my working memory long enough to manipulate it. I have come up with a few work arounds for really simple arithmetic, but anything complex is no longer possible. Generally, I think I still think OK, but I think that is due to the medications I take. I still have the ability to evaluate very complex problems, and can process large amounts of data. I just can't add!

Scraping the ceiling was NOT fun!
I have sporadic problems with sequencing. I can usually tell when I am having a more challenging day, and try to adjust accordingly. By "adjusting" I mean canceling any ambitious plans, and staying close to home if at all possible. Since I rarely have any ambitious plans this usually does not pose much of a problem. We do plan some projects to do around the house now and then. The most recent was redecorating the dining room. Removing the acoustic ceiling tiles which were falling down, and patching the plaster and painting. Overall it was fun and rewarding, though it left me with a sore back. Cindy worked really hard too. My bvFTD really wasn't an issue except when I got frustrated and may have put a small hole in a wall with a hammer. Oops!

Now that the weather is getting warmer I can do some gardening. Cindy and I both enjoy working in the yard. She has done a wonderful job creating flower beds, and everything is just starting to bloom. In a few days we will be up to our armpits in irises. I have a small vegetable garden. Just some lettuce, tomatoes, and herbs, but I enjoy it and it gives me something to do.

If I get interrupted when I am trying to do something, I may never get back on track. My brain works very linearly. One thing at a time. Trying to do two things at once only leads to frustrated failure at both. As long as I stay focused, I do pretty well.

Day-to-day in the moment I am still functioning well most of the time. I try to keep a loose schedule. The routine of the daily stuff is comforting. Cooking, cleaning, laundry, shopping, and all the rest of the housekeeping and personal hygiene stuff is part of the routine. When the dog hair starts to blow around like tumbleweeds I know it is time to vacuum. Maggie does not shed near as much as Gracie did, and her fur is much shorter. Cindy must dust a lot because I don't do it very often, and the dust isn't too thick in most places. I usually don't stink too bad, so I must be doing ok with the showering and bathing. I have not had a hair cut in 5 years, but that is by choice dictated by finances and the fact that Cindy likes my hair long.

Maggie loves to ride in the Jeep.  She just wants to be near us.
I am still driving. I am very careful, but so far have not had any issues. I drive a 6-speed manual Jeep Wrangler Unlimited (4-door) Rubicon. Years ago my neurologist said I would probably start having difficulty with the manual before I had difficulty driving since with low range it has 12 speeds forward, and 2 reverse, with a couple of neutrals thrown in. So far – so good! Except for an occasional vacation, most of my driving is local on streets I am very familiar with. When I am having a bad day I do not drive.

I wrote this following paragraph a year ago, and it is still true. The only thing I could add is that everything mentioned is even worse. This is my area where I notice the most changes, and none for the better. The biggest changes I have noticed are in my motivation, and in my speech. One of my most debilitating symptoms is not being able to make myself do anything. Thinking about doing something is just as good, if not better, than actually doing it. I just cannot get started, and this has definitely gotten worse in the past year. I am also more anti-social, but I think that is related somehow. I fumble around for a word, or cannot remember a name or title much more often that before. This is still not debilitating, but it is now becoming more noticeable as it is an almost daily occurrence.

I am still taking Aricept at 20mg/day, and Namenda at 20 mg/day, and Ritalin at 20 mg/day. I have been taking these 3 drugs for 5 years and some change. Yes! They have some side effects, but in my opinion the benefits are well worth it for me. I have had to add glyburide/metformin 5/500 (2 pills twice a day for a daily dose of 10/2000 - if my arithmetic is right.) I probably forget to take my medications at least one or two days a month, but I do not use any reminders other than keeping them in plain sight in the kitchen. I also take Lion's Mane Extract. I seem to take it about 3-4 months out of each year. I also take losartan for blood pressure, and levothyroxin for thyroid. Occasionally I take a vitamin D and B supplements., and pomegranate juice when it is on sale. At certain times of the year I also must take some antihistamines. Lately I have been taking dyphenhydramine, and sudafed PE. They both have side effects, especially with short term memory, but they seem to be better than some of the others I have tried. The worst one for affecting my memory seems to be Zyrtec, which I try to avoid now that I figured it out. I took a Zyrtec a few days ago and was so drowsy I couldn't function. Zyrtec just does not agree with me.

Maggie and Cindy make the bad days bearable.
Behaviorally I have noticed some changes. My temper is very short sometimes. I get angry, or act angry even when I really don't feel that way. It is difficult to explain, and difficult to control. Sometimes I just need to spend some time alone to let my emotions stabilize. I know this is very difficult for Cindy to cope with when it occurs. It is not an everyday occurrence, and seems to be related to my general stress levels, and frustration. Other times, when someone gives me a legitimate reason to be angry I have normal control. Very unpredictable. This is something I will have to watch closely.


I frequently say that “Some days are better than others.” Recently someone asked about what my bad days are like. I rarely write about my bad days. Partly because I don't dwell on them, and partly because I often don't remember much about them. It just so happens that I have had a few bad days in a row the past couple weeks. I think it is a side effect of my antihistamines. On bad days I have no motivation whatsoever. I just want to lay around on the couch all day. Everything makes me feel stressed. Just doing the little things like meals, and taking care of the dog, are an accomplishment. Going to the store shopping is way too much to ask. Too stressful! I do not want to go anywhere or see anyone. On these bad days I am most comfortable curled up with a good book in a dark room, or watching an old movie. I just want to be a hermit.


For the past several years I have had a string of bad days every spring. This is a particularly bad time of year for my allergies, and I have to take antihistamines. I believe this is the cause of my seasonal difficulties. At other times of the year bad days are much less frequent. Most days are still pretty good, and even the bad days are tolerable.



Maggie is pure Cane Corso (Italian Mastiff)
Maggie is a big help. She keeps me on track, and anchored in the moment. She will never be a service dog in the full capacity as was Gracie, but here at home she takes very good care of me. I cannot even imagine her in a crowded restaurant, or shopping. She usually waits for us in the car instead of coming inside with us, or greets us exuberantly when we get home. Maggie is my constant companion, and is rarely more than a few feet away. Usually she is snuggled right up against me. The reason she can't be a service dog is because, like me, she has some impulse control issues. Her main impulse is to chomp on strangers. She is extremely protective. First and foremost Maggie is a guard dog. Most of the time she is very well behaved, but she has her moments. Again, kind of like me.

Some days are better than others, and after 6 years most days are still pretty good.

Please take a few seconds to click on an ad. The pennies do eventually add up. Help buy Maggie a scoobie-snack. Thank you in advance.





Monday, February 15, 2016

Gabapentin in the Treatment of Dementia and Behavioral Disturbance



Dr. Marcotte is director of the psychiatric outpatient clinic Marcotte and Associates in Fayetteville, NC.
Acknowledgments:The author reports no financial, academic, or other support of this work.  


Abstract

Are there safe treatments for elderly patients with dementia and aggression? This article describes the use of gabapentin, a nonmetabolized antiepileptic drug, for control of aggression in the elderly patient with dementia. The drug’s relative safety and ease of use are demonstrated to assist in the control of aggressive behavior. The objective of the study was to determine the effectiveness of gabapentin in the acute management of behavioral disturbance in patients who had failed to respond to previous medications and had failed their nursing home placement.

Introduction

With the aging of our population, psychiatrists will increasingly be called upon to provide services to nursing homes, general hospitals, and families of loved ones with dementia and aggression. Although traditional and atypical antipsychotics are commonly employed in the management of aggression, antiepileptic drugs are being used with growing frequency.
Dementia is a major health concern today. It is expected that in the next 50 years, the worldwide population of people >80 years of age will increase by 6-fold, to 370 million.1With the aging of our population and enhanced life expectancy, the large number of baby boomers will shortly reach the ages at which dementia tends to occur, presenting a greater challenge to medical resources and the economic welfare of families.2,3 Those of us who have worked with families that maintain an elderly demented patient in their home are witness to the emotional stress and financial burden that caretaking involves. Factors that affect the family’s ability to care for an elderly relative in the home include incontinence, aggressive behaviors toward others, behaviors resulting in self-injury (eg, falling), or wandering from the premises.
Many nursing homes are equipped with devices that monitor a patient’s whereabouts (eg, anklet or door alarms). However, while nursing home staff may be familiar with patients who wander or are incontinent, they may not be equipped to handle aggressive behaviors that threaten staff members or other residents of the nursing home. Aggressive behavior, considered an immediate crisis within the patient’s home or the nursing home, frequently leads to psychiatric hospitalization. To maintain the possibility of having the patient return to the nursing home, families are often taxed with additional costs, such as paying for the vacant nursing home bed during the patient’s hospitalization in a psychiatric unit.
Patients with dementia hospitalized for other medical procedures in a general hospital have longer lengths of stay.4 Lyketsos and colleagues4 studied 823 patients in a general hospital and found that the average length of stay for patients with dementia exceeded that for patients without dementia by 4 days. There were higher costs of hospitalization and greater complications. Unfortunately, that study did not differentiate delirium from dementia. A substantial portion of those patients who exhibited demented behavior may have qualified for the diagnosis of delirium.5 Patients with a diagnosis of dementia who were admitted to a general hospital were found not to have higher rates of mortality in the hospital. Another study by Lyketsos and colleagues6 noted that of patients with dementia, 27% had apathy, 24% had depressive disorders, and 24% had aggression and agitation. Although apathy and depression were noted to have significant effects on the individual and earlier nursing home referral, a worse prognosis accompanied those patients who had aggression and agitation. Such symptoms also increased the cost of caregiver burden.7
Not only does aggressive and behavioral disturbance such as agitation lead to early nursing home placement, it can lead to expulsion from the nursing home. Behaviors that include aggression toward others result in more costly expenditure, greater morbidity, higher mortality, and increased financial burden.4,6 In addition, the symptoms of agitation and aggression become more significant and frequent as dementia becomes more advanced. Lyketsos and colleagues6 studied patients with symptoms of aggression and agitation and found that 13% had mild dementia, 24% had moderate dementia, and 39% had severe dementia.
The large expected increase in patients with dementia and aggression will produce significant burden for psychiatric hospitals and nursing homes.  Psychiatric care and management of aggressive symptoms must be obtained before the patient can return to the nursing home, even after the hostile behaviors have been ameliorated. Thus, length of hospital stay for general medical purposes is expected to increase.
This article examines the use of gabapentin in a traditional inpatient setting, including patients ≥65 years of age who were both demented and aggressive. Gabapentin, a relatively nontoxic, nonmetabolized, nonplasma-bound antiepileptic drug, was used in addition to a minimal amount of atypical antipsychotics. The results indicate that gabapentin offers a safe alternative to metabolized, plasma-bound antiepileptic agents.

Treatment

Recent treatment of behavioral disturbance with aggression in the elderly has included anticonvulsants, traditional antipsychotics, and novel antipsychotics. The use of anticonvulsants has a substantial advantage over antipsychotics; anticonvulsants are less anticholinergic, thus they are less likely to contribute to increasing dementia.8-16Anticholinesterase medications have been used to decrease the enzyme acetylcholinesterase to preserve acetylcholine (ACH) and increase mental acuity. Anticonvulsants have less impact on ACH and may be less harmful to memory, attention, and concentration in demented patients. There have been more reports of the use of gabapentin in the treatment of behavioral disturbance in the elderly.17-22 Gabapentin has a unique advantage because it does not plasma bind, displace other medications, or cause drug-medication interactions. Gabapentin is not metabolized in the body and 95% of the drug is excreted in the urine. This obviates problems associated with liver toxicity or other metabolic concerns in the cytochrome P450 system. Because it is excreted in the urine, excessive quantities of gabapentin can be accumulated in those patients with renal failure. Gabapentin doses must be reduced in such patients.

Method

Patients treated with gabapentin over 3 years (N=210) through a small community hospital service were retrospectively reviewed. Gabapentin blood levels were obtained from a small number of patients during the course of this study (BJ Wilder, MD, oral communication, 1996). All patients who underwent treatment with gabapentin were selected from this pool. Only patients ≥65 years of age were identified and those with dementia and behavioral disturbance were included in the study. Of the patients >65 years of age, 48 were identified and 13 were excluded. Although the 13 patients excluded from the study did indeed meet criteria for a diagnosis of dementia, they did not display sufficiently aggressive or disturbing behaviors to result in expulsion from a nursing home. Several of the patients had frequently experienced paranoid ideations, suspiciousness/distrust of others, and cognitive psychotic disturbance, but were not overtly physical or disruptive in their behavior. However, 35 patients were identified as having significant behavioral problems resulting in their expulsion from nursing homes. All patients in the study were treated with gabapentin throughout the course of hospitalization. During the course of treatment, ancillary medications were used (Table). Eleven patients had small-to-moderate dosages of risperidone, up to a maximum of 6 mg/day, added to their course of treatment. Most had much more modest dosages. Many of the medications patients were taking before hospitalization were withdrawn for the study.
 
Patient charts were reviewed by an independent research assistant who recorded frequency of the following behaviors: yelling, moaning, screaming, crying, and verbal or physical threats of aggression. Sexually inappropriate behaviors (grabbing, fondling, or sexually provocative comments) were also recorded.
Length of hospital stay was divided into the first and second halves of hospitalization. Each patient served as his or her own control. Charts were reviewed on each patient, and the number of aggressive events that occurred during each patient’s first and second half of hospitalization was recorded (Table).

Results

The average age of all 35 patients was 78 years, and the average length of stay in the hospital was 14.37 days. The number of aggressive events occurring in the first half of the hospitalization was 102; in the second half there were 34. Three patients accounted for 61.8% of the aggressive behavior in the second half of the hospitalization.
The data were analyzed by pairing each observation in the second half of hospitalization with an observation in the first half. The mean difference in aggressive events between the first and second samples was 1.94, with a standard error of 0.518. The probability of observing such a difference in aggressive behaviors by chance alone between the first and second observation period is less than .001. The value of the t statistic for this test was 3.747, thus we can say with 99.9% confidence that the behavioral change exhibited between the first and second half of the hospital stay was not a result of chance.
Although 17 patients accounted for 100% of the disturbing behaviors in the first half of the hospitalization, 11 patients accounted for all of the aggressive behaviors in the second half of hospitalization. Both frequency and intensity of aggressive acts diminished during the course of hospitalization for 16 patients. Only one patient had more events in the second portion of the hospitalization than in the first. Although 17 patients (48%) had aggressive behaviors that continued during hospitalization, 18 patients who had aggressive behaviors before hospitalization had no aggressive behaviors during either their first or second half of the hospitalization. This result is possibly associated with a good response to medication management or the result of hospitalization itself. All of the patients were managed with gabapentin throughout the entire course of hospitalization. Risperidone was the most common medication given as an add-on throughout hospitalization, although one patient received haloperidol. The addition of risperidone was employed in the 11 patients exhibiting aggressive behaviors. Other antipsychotics, antidepressants, and benzodiazepines were avoided. The use of risperidone does not account for the positive results in this study because only 11 of the 35 patients took risperidone during the study. Six of the 11 patients had no aggression in both halves of the hospitalization, whereas 5 exhibited aggressive behaviors in the first half and 4 continued to be aggressive in the second half. The total number of aggressive episodes for the risperidone- and gabapentin-treated group was 30 in the first half and 11 in the second. These figures represent a 36% reduction in aggressive behaviors, whereas in the gabapentin-treated group there was a 30% reduction (102 aggressive events occurred in the first half of hospitalization and 34 in the second).

Discussion

It is highly likely that the removal of a patient from his or her environment and the placement of that patient in a hospital with staff who are highly trained to manage aggressive behaviors does have a salutary effect on the diminishing aggression in a patient with dementia. This may contribute to the fact that 18 of the patients had no disturbing behaviors in the first half of their hospitalization. It is also possible, however, that medication management at the inception of treatment in the first hospital stay could account for some of the diminishment in aggression.
This was a retrospective, open-label study of gabapentin. As such, it is limited to noncontrolled conditions. Although the data were retrospectively examined, results must be replicated in a controlled, blind experiment.

Conclusion

The use of gabapentin in demented patients with aggressive behaviors has been shown to be effective in the management and control of aggressive, hostile symptoms. Gabapentin had no substantial side effects other than mild sedation in one patient,4 who tolerated only 300 mg/day secondary to renal insufficiency with elevated serum urea nitrogen levels and increased creatinine clearance, both of which were in the abnormal range. One other patient could tolerate only 600 mg due to sedation. Both patients were noted to have sedation on higher doses. No adverse events (eg, falling) were noted in the treatment cohort. Aggressive behaviors have a substantial impact on caregivers, and can lead to expulsion from nursing homes and mandatory psychiatric hospitalization. Gabapentin represents a safe medication for elderly patients with dementia and aggressive behaviors. This study employed an average gabapentin dosage of 1,400 mg/day in an elderly population (mean age=78.8 years), demonstrating the drug’s effectiveness in high dosages without any deleterious side effects other than mild sedation. The use of antipsychotics, such as risperidone, did not substantially improve aggressive behaviors more than gabapentin.  PP

References

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2.     Ernst RL, Hay JW. US economic and social costs of Alzheimer’s disease revisited. Am J Public Health. 1994;84:1261-1264.
3.     Weiner M, Powe NR, Weller WE, Shaffer TJ, Anderson GF. Alzheimer’s disease under managed care: implications from Medicare utilization and expenditures patterns. J Am Geriatr Soc. 1998;46:762-770.
4.     Lyketsos CG, Sheppard JM, Rabins PV. Dementia in elderly persons in a general hospital. Am J Psychiatry. 2000;157:704-707.
5.     Kolbeinsson H, Jonsson A. Delirium and dementia in acute medical admissions of elderly patients in Iceland. Acta Psychiatr Scand. 1993;87:123-127.
6.     Lyketsos CG, Steinberg M, Tschanz J, Norton MC, Steffens DC, Breitner JC. Mental and behavioral disturbances in dementia: findings from the Cache County study on Memory in Aging. Am J Psychiatry. 2000;157:708-714.
7.     Mega MS, Cummings JL, Fiorello T, Gombein J. The spectrum of behavioral changes in Alzheimer’s disease. Neurology. 1996;46:130-135.
8.     Finkel S. Research methodologic issues in evaluating behavioral disturbances of dementia. Int Psychogeriatr. 1996;8(suppl 2):149-150.
9.     Tariot PN, Erb R, Podjorski CA, et al. Efficacy and tolerability of carbamazepine for agitation and aggression in dementia. Am J Psychiatry. 1998;155:54-61.
10.     Tariot PN, Frederiksen K, Erb R, et al. Lack of carbamazepine toxicity in frail nursing home patients: a controlled study. J Am Geriatr Soc. 1995;43:1026-1029.
11.     Cooney C, Mortimer A, Smith A, Newton K, Wrigley M. Carbamazepine use in aggressive behavior associated with senile dementia. Int J Geriatr Psychiatry. 1996;11:901-905.
12.     Sandborn WD, Benfeldt F, Hamdy R. Valproic acid for physically aggressive behavior in geriatric patients. Am J Geriatr Psychiatry. 1996;3:239-242.
13.     Herrmann N. Valproic acid treatment of agitation in dementia. Am J Psychiatry. 1998;43:69-72.
14.     Mazure CM, Druss BH, Cellar JS. Valproate treatment of older psychotic patients with organic mental syndromes and behavioral dyscontrol. J Am Geriatr Soc. 1991;42:906-909.
15.     Mellow A, Solano-Lopez C, Davis S. Sodium valproate in the treatment of behavioral disturbance in dementia. J Geriatr Psychiatry Neurol. 1993;6:205-209.
16.     Raskind MA. Evaluation and management of aggressive behavior in the elderly demented patient. J Clin Psychiatry. 1999;60:45-49.
17.     Herrmann N, Lanctot K, Myszak M. Effectiveness of gabapentin for the treatment of behavioral disorders in dementia. J Clin Psychopharmacol. 2000;20:90-93.
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Use of gabapentin in the treatment of behavioural and psychological symptoms of dementia: a review of the evidence.

Abstract

Behavioural and psychological symptoms of dementia (BPSD) have been defined as a heterogeneous range of psychological reactions, psychiatric symptoms and behaviours that may be unsafe, disruptive and impair the care of a patient in a given environment. To date, there are no US FDA-approved drugs or clear standards of pharmacological care for the treatment of BPSD. The novel antiepileptic agent gabapentin is being increasingly considered for use in the geriatric population because of its relatively favourable safety profile compared with other classes of psychiatric medications. Gabapentin has been administered to several geriatric patients with bipolar disorder and patients with dementia. It has also been reported to be successful in the treatment of a 13-year-old boy with behavioural dyscontrol, a finding that suggested a possible role for gabapentin in the treatment of other behavioural disorders. The purpose of this review was to find evidence for the use of gabapentin in the treatment of BPSD. To this end, a search was performed for case reports, case series, controlled trials and reviews of gabapentin in the treatment of this condition. The key words 'dementia', 'Alzheimer's disease' and 'gabapentin' were used. Searches were performed in PubMed, PsycINFO, Ovid MEDLINE, Cochrane Library and ClinicalTrials.gov. The search revealed that there are limited data on the efficacy of gabapentin for BPSD in the form of 11 case reports, 3 case series and 1 retrospective chart review; no controlled studies appear to have been published to date on this topic. In most of the reviewed cases, gabapentin was reported to be a well tolerated and effective treatment for BPSD. However, two case reports in which gabapentin was used in the context of agitation in dementia with Lewy bodies questioned the appropriateness of gabapentin for all types of dementia-related agitation. The dearth of available data limits support for the off-label use of gabapentin for the treatment of BPSD. Furthermore, controlled studies should be conducted before gabapentin can be clinically indicated for the successful treatment of BPSD.

Monday, February 1, 2016

Pets and bvFTD - Choosing the Right One is Important.

Gracie!
Dogs Rule! Cats ...not so much.

It has been nearly a year since my last update, so this post is a little long. I am not even going to try to cover all that happened the past year. Instead I plan to go into a lot of detail about a dog or two. Pets are very important for people with bvFTD.

There is no particular reason why I have not written. It seems that every time I was going to write something I found something else to do instead. The first part of last year I was busy gardening, and just doing everyday stuff. We went on a nice little vacation at a cabin in Ohio's Amish Country. Of course we took Gracie with us. She has been my Service Dog for the past 2 years, and has gone everywhere with us. It wasn't long after that when the computer that I use to write for this blog suffered a catastrophic hard drive crash. I don't think it really suffered much because it was quick. I couldn't afford to replace it for a few months, so that gave me another excuse not to update the blog. I won't bother to do it on my phone. I keep in touch regularly with my close friends on both Facebook and Twitter, so it isn't like I was a complete hermit. Then it was time for the holidays, and things got really busy.

Gracie loved playing in the snow.
In early November Gracie had a major stroke. She had always been deaf, and knew sign language very well. Gracie knew around 70 or so signs, and would learn a new one quickly as needed, or just figure out what you wanted. She understood signed sentences. Her stroke left her not only deaf, but also totally blind. She recovered well from the stroke, and within a couple weeks was getting around the house very well.

At the end of November we had a 10 day vacation planned. The vacation was a Christmas present from my boys. Gracie was doing well enough that with a team of skilled caregivers she would be fine until our return. She was given wonderful and loving care while we were away. The day before our return from New Orleans Gracie had another stroke. When we returned the next day Gracie did not recognize us. She didn't respond to much of anything for a couple of days. Then she bounded up to us and said “Hello!” Once again she had made a remarkable recovery from a stroke. She was a little wobbly, but still doing very well considering she had recently had two strokes.
This is one of my favorite pictures of Gracie. She had a sense of humor!

We got a new computer for Christmas, so here I am writing again. Around Christmas Gracie had a series of about 3 severe strokes, and several smaller ones a few days apart. Each time she would recover after a couple days, but was a little weaker and more wobbly. She did not appear to be in any pain, but was sometimes very confused. She still loved her scoobie-snacks, and had learned a bunch of new signs by touch since she couldn't see. She even played with Cindy when she was feeling better. Every time we thought it was going to be time for her last visit to the vet, she would recover, and let us know that it wasn't her time just yet.

Since early November when she went blind we had been leading her to the back steps outside so she would not accidentally fall off the edge of the deck. She still managed to go outside as long as she was able to walk.
Gracie loved silk scarves,
and would choose the one she wanted to wear.

On New Years Day Gracie was on the floor next to the couch between Cindy and I having a good time. She reviewed all her new touch-signs (sit, stay, down, hug, scoobie-snack, etc.). She was her fat dumb and happy self. Then about 3 PM she tilted her head way up pointing her nose at the ceiling. She had another huge stroke. It came on very suddenly. She had a seizure that lasted a few minutes, and then woke up for a while. She wanted to be held. She couldn't stand up, but she did manage to crawl over to Cindy when she sat on the floor next to her. Around 7 PM she had another seizure which only lasted maybe a minute, but seemed to be more severe than the first one. Poor Gracie never woke up after that. She died around 2 AM on January 2nd, 2016 surrounded by her loving family.

Wherever Gracie went she was the center of attention, and loved it.
Gracie was more than a pet, or a Service Dog. She was a full member of our family, and truly “My best girl.” Gracie will always own a piece of our hearts.

With my bvFTD my emotions are blunted. I do not feel things the way I remember I used to feel. If emotions were colors, all of those bright vibrant hues I used to experience have now turned to washed-out pastels. Well, I can tell you that I definitely felt the loss of my best friend and companion and caretaker. The loss of Gracie was the most intense feelings I have felt in years.


Gracie owns a place in our hearts.
It was rough for both Cindy and I with Gracie gone. There was a emptiness in our house, and in our hearts. After some long discussion we decided not to wait a long time to get another dog. We both wanted a large dog, and we definitely wanted to have a rescue. We really did not want a puppy, and were expecting to have to put in some work and training. We both feel that there are so many wonderful animals out there in need of a loving home it is shameful not to help them. We were not in any rush. Finding the exact right fur-baby can take some time.

Cindy started looking online at rescue organizations within a couple hundred miles of Swanton. After a few days of seeing what she was finding, I also started looking. Did you know that about 80% of the animals in shelters are pit bulls? I have nothing against the breed except that I personally think they are butt-ugly! We were looking into a couple of Great Pyrenees, and even a Bernese Mountain Dog. They all seemed to be older dogs that had some behavioral issues from severe abuse that we did not want to deal with. After a couple weeks we went to look at a Shar-Pei. The poor dog was unresponsive, and seemed dumb as a rock. Definitely not for us!

Then Cindy saw an ad on Craigslist or somewhere in Michigan for a 3 year old Cane Corso Mastiff named Maggie that needed to be re-homed. Her family had moved, and expanded from her owner and 2 children to include a fiance and another 2 children. With parents working, school, and 4 children doing all the usual activities the owner felt she was spending way too much time in her crate. For some reason Cindy had a good feeling about it, and convinced me to take a look. We made an appointment for Saturday January 16th to meet and greet.

I have always owned rather large dogs, mostly German Shepherds. Of course Gracie was 110 pounds of silky coated Akita. I had always wanted a Mastiff, but had shied away from the breed because they tend to drool, and are not the brightest crayon in the box. I had never even heard of a Cane Corso Mastiff. I did some research, and was very impressed with what I found out. Like all Mastiffs they are guard dogs. They were also bred to hunt large game independently such as wild boar or bear. (Just like Akitas!) Compared to other Mastiff breeds the Cane Corso is reported to be more intelligent, more adaptable, and more athletic and agile. They are a large breed weighing about a hundred pounds or so. Many have cropped ears a practice that I am not very fond of.

Saturday finally arrived, and we were excited to go see her. We had no expectations, and really both felt it was a little too soon for another dog. We also knew that when looking for a rescue, or in this case a re-home, you had to be flexible with the timing when the right animal comes along. We got a late start, but made the 3 hour drive up into Michigan only getting lost once. I drove, and used the
GPS in the Jeep as always. I did not take my pills because I was driving. Sometimes they make me a little sleepy a few hours after I take them. I felt good, and was having a good day. We found the house easily.

This is Maggie. She is a Cane Corso Italian Mastiff.
When we got there , Maggie, and her owner, Kate, were just going back inside from a walk. We pulled in while they were in their attached garage. We got out of the Jeep to the sound of a large dog barking a serious warning to stay away. She was doing her job as a watch dog, and a guard dog. We approached, and she seemed to calm down a little as we spoke to both her and Kate. Every time we moved to get within about 5 feet of them she would lunge and snap, trying to bite. Even after I fed her a treat, which she accepted, she tried to bite. I finally realized that we were standing right outside of the garage entrance, and both Kate and Maggie were inside. She was guarding the entrance, and wouldn't allow us in. I suggested we go inside the house, and see how she acted.

Once inside, Maggie plastered herself up against Kate, and lunged and snapped every time either Cindy or I came near. After observing her for a few minutes, I realized that we were not seeing overt aggression, but rather very aggressive protective behavior. Maggie kept herself between us and Kate, and would not let us approach. She would sit, stare aggressively, then lunge, growl, and snap. She was putting on a very impressive show of doggie intimidation. Unbeknownst to poor Maggie I once had a 120 pound white German Shepherd that was too vicious to be a junk-yard dog. I recognized her aggression as different, more of a warning.

I also have bvFTD, so of course I asked Kate for her leash so I could just take her away from Kate and her protective stance. I figured I would probably get bitten in the process, but if we were ever going to get anywhere we needed to get Maggie away from her owner.

I took her leash, and was met by a snarling, growling, snapping, lunging Mastiff. She grabbed my hand, and I instantly knew she was controlling her bite. It was just hard enough to hold me. I knew from my shepherds not to pull away, but rather to push. I pushed my hand into her mouth, and smacked her on the head, and yelled “NO!” She dropped my hand, and I jerked her leash, said “Come!” and started to walk her across the room. She grabbed my hand again with a lunging snarl, and I smacked her again, and said “No!” I continued to walk her around the room. No more growls or snarls. She walked. She sat. She came when I called her. She was very wary, but fine. I scratched the back of my hand on her back teeth when I shoved it into her mouth, so my hand was bleeding a little. Had I not done that she would never have broken the skin because she was trying to be careful not to hurt me in spit of all the lunging-snarling-growling intimidation display.

She calmed right down, I walked her back over to Kate, and then away again. She sat next to me as we talked. She was still very wary, but attentive, and aware of everything that was going on. She was still very wary of Cindy, and still wanted to protect Kate from her. After a few lunges, and snaps, and smacks, Cindy was able to walk her around the room. Maggie actually seemed to be a little afraid of Cindy. Maggie was sitting by Kate again, and suddenly decided Cindy had come too close to her owner. She gave her a stare, then lunged. She caught us all by surprise, and pinched Cindy a good one on her hip. Cindy was a little shaken up, but soon recovered

(Now before you small dog owners get your panties all in a twist I want to clarify. Sometimes for a dog over 60 pounds or so it is necessary to smack them in the head to get their attention. When excited they will often ignore treats, and commands, and everything else. A smack, not hard enough to hurt them, and not as a punishment, but enough so it makes them pay attention to you, works wonders. For the rest of the time a scolding, or jerk on a leash or collar is plenty of correction. Oh! And for the record, your family is NOT a dog pack, and you do not need to be some weird alpha-dog. That's just dumb, but is making somebody lots of money.)

At this point I was pretty sure that this dog was too attached to its owner to be re-homed. She was overly protective, and obviously had some severe aggression issues. We sat talking, and Kate and I made Maggie sit next to me instead of her. Cindy took her for a few walks around the room, and then when she came back she sat leaning against me instead of Kate. What? None of us expected that.

Cindy took control of her, and walked her around a few times without incident. Cindy spent some time with Maggie having her walk, and sit, and stay, and come. Maggie was still wary, but doing whatever Cindy requested. While Cindy and Maggie were doing that we were also talking with Kate. We learned that Maggie had been very aggressive to Kate's ex-husband, and would not allow him to come within a few feet of her. She was fine with the rest of the family, and did well with children. That explained a lot to me about her behavior. She had learned that she was allowed to be aggressive to some people sometimes especially when she thought she was protecting Kate.

Maggie on the ride home with her head on the center console.
After a while, I looked at Cindy, and said, “What do you think?” I fully expected Cindy to say no because Maggie had bitten both of us at first meeting. This was a dog with some serious aggression issues, and would need some remedial socialization. To my surprise, Cindy said yes. Arrangements were made, goodbyes were said, and I took Maggie out to the Jeep. Maggie jumped right in. Kate hardly cried at all. It was obvious that Maggie had a very loving family.

The ride home was long, and uneventful. Maggie spent most of the ride with her head right between us looking out the front window. She kept nuzzling, and kissing our ears. She finally laid down with her head on the console. She is so big that when she is in the back of the Jeep her front end is still in the front seats.

When we got home, we let her into the house. We let her loose to sniff around, and explore. She went everywhere, and stuck her nose in everything. There was lots to explore. She was very excited, and seemed happy. We relaxed, and watched some TV. Maggie was very well behaved. Many scoobie-snacks were involved to make her feel welcome. We did all the normal new-dog things like showing her her food dish, and water, and where to go outside. When it was time for bed, Maggie came upstairs with us. She slept on her bed on the floor next to us. She snored almost as loud as my friend Walter.

Maggie was a little excited at first.
Over the next few days Cindy and I worked on developing Maggie's trust. It came quickly. Within a couple days her favorite spot became the end of the couch cuddled up to Cindy. Her other favorite spot is on the other couch cuddled up to me. Even as I write this her head is in my lap. Maggie is wonderfully affectionate, and wants very much to please. She is doing very well, and adjusting better than I ever would have expected.

After the first week, we had some company over for dinner. In preparation I purchased a soft muzzle for her. I had read in her Vet's notes that she used one for her doctor's visits, and tolerated it well. I tried it on her a few times to get her used to it before our company arrived. She did not seem to mind it at all. When they got here we were ready with her leashed and muzzled. She ran to meet them. She was of course barking, but her tail was also wagging in greeting. At various times within the first 20 minutes or so she did lunge a few times, but was quickly corrected. I had our guests tell her, “No!”, and scold her. She listened, and learned. She is learning that is not appropriate behavior.

By the time we sat down to dinner, Maggie just laid on the floor behind my chair. She wanted to be close to us, but was no longer wary of out house-guests. Overall she did much better than we expected. I think she has realized that she does not need to be so protective. We kept the muzzle on her for her safety, but after the first half hour she didn't need it. That said, she is still an alert watch dog. She investigates any strange sounds, and barks to warn off any would-be
Hard to believe that 2 weeks ago
Maggie was chomping on my hand.
intruders – especially cats!

It has been exactly 2 weeks today, and Maggie has filled the emptiness in our house. She has already become a part of our family. By the way she whines whenever either one of us leaves the house, and greets us both with much butt-wagging and slobbery kisses when we return, I guess we have become a part of hers, too.

I don't know if Maggie will be able to be socialized well enough to become my service dog, but she is already my companion dog ...that is when I can pry her away from Cindy.
Maggie! Welcome to our family.

Some days are better than others, and right now most days are still pretty good.

(Please click on an ad before you leave, and help buy Maggie a scoobie-snack.)







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I said all that, so I could say this:
For the person with dementia, a pet:
  • Offer affection and “unconditional love.” It’s amazing how a cat on the lap or a friendly dog with a wagging tail evokes a smile and positive response.
  • Provide an opportunity for meaningful chores. Having a daily “job” gives you a sense of purpose and a sense of accomplishment when the chore is accomplished.

  • Introduce fun into your life.
  • Provide sensory stimulation. Having an animal in your lap to pet, or to be by your side provides comfort and may even reduce agitation and anxiety.
  • Support opportunities for socialization. People like to talk about their pets. Most of us talk to our pets.
  • Offer an excuse to get outside. People with dementia spend too much of their time indoors. Walking the dog provides for an excuse to get outside.
While having a pet provides for many benefits, use common sense to assess whether you or yours are able to care for the pet. You may find a “lower maintenance” pet more appropriate like a fish aquarium or birds. Har! Worst advice ever! Just try petting your fish, or having it sit in your lap. I suggest pets that are warm and furry!



Friday, March 27, 2015

Progress Update 2015 - 5 Years With bvFTD


It is that time of year again when I try to write a progress report of sorts on the progression of my bvFTD. It has been five years since my diagnosis. Five years! The average life expectancy of someone with bvFTD just happens to be about 5 years after diagnosis. With that in mind, I am doing well.

I just took a few minutes and re-read the updates I have written in past years. I notice that they all sound
Though I try to be very careful, I am still driving.
about the same. This one will be no exception, and that is really great. I am worse-off now than I was 5 years ago. My disease is progressing, but so far it is progressing slowly. I had really hoped that my case would fit the criteria for what is called Phenocopy bvFTD, however I have too much progression. That is my self-evaluation, but probably a very accurate one.

So! Where am I now?
(Actually, I know where I am, what day it is, and who is the President. I'm just sayin...)

My dysexecutive syndrome and cognitive problems have progressed slowly but surely over the years. I always use my ability to do mental arithmetic as a way to measure. I simply cannot do mental math any more - more precisely I don't bother because it is so difficult. When I try it is like wrestling with tangled thoughts like wet spaghetti - numbers slip away because I can't hold a number in my working memory long enough to manipulate it. Generally, I think I still think OK, but I think that is due to the medications I take. I still have the ability to evaluate very complex problems, and can process large amounts of data. I just can't add!

I have sporadic problems with sequencing. I can usually tell when I am having a more challenging day, and try to adjust accordingly. By "adjusting" I mean cancelling any ambitious plans, and staying close to home if at all possible. Since I rarely have any ambitious plans this usually does not pose much of a problem. I usually notice it when I am cooking. I still enjoy cooking, and Cindy and I make most meals from scratch. this Not only is it healthier to avoid the extra chemical additives in packaged prepared foods, it is fun cooking together. If I am distracted when I am doing something it can get me all mixed up. I can only concentrate on one thing at a time. There is no such thing as multi-tasking in my life anymore. As an example: Recently Cindy came home from work as I was preparing something for dinner. I cannot for the life of me remember what I was making. Anyway, she started telling me about her day at work as I was getting it ready to put into the oven. I placed whatever it was into the oven, and stopped. I had completely forgotten to add the spices, and the rub, and the sauce. (Maybe it was ribs?) I pulled it back out of the oven, and started over after shooing poor Cindy out of the room. Oh! I remember now! It was actually chicken, and I was getting it ready to put into the rotisserie. I had to start all over again even repositioning it on the skewer, and retying it. And that is an example of how it is to try and remember things. I have a memory that is vague, thisand if I dig and poke at it sometimes it comes back. Sometimes not.

The above example aside, my memory is generally still mostly intact. Between my ADHD-like symptoms and deficits in working memory sometimes things do not seem to make it to memory. I just have a blank spot. I find myself more frequently saying to Cindy, "I have no memory whatsoever of that!" It doesn't happen all that often, but more often than before, and it is quite noticeable when it does occur. When I have memory issues they are usually of the "missing time" variety. The last half of last year seemed to have more frequent occurrences of "missing time".   Antihistamines were involved.

Day-to-day in the moment I am still functioning well. I try to keep a loose schedule. The routine of the daily stuff is comforting. Cooking, cleaning, laundry, shopping, and all the rest of the housekeeping and personal hygiene stuff is part of the routine. When the dog hair starts to blow around like tumbleweeds I know it is time to vacuum. Cindy must dust a lot because I don't do it very often, and the dust isn't too thick in most places. I usually don't stink too bad, so I must be doing ok with the showering and bathing. I have not had a hair cut in 4 years, but that is by choice dictated by finances and the fact that Cindy likes my hair long.

My behavior and impulse control may have suffered some this past year. This is an area which is difficult to self-evaluate. I notice I am more tempted to act out in public by confronting people who are annoying me, but I am mostly able to control my impulses. Sometimes I just don't care, and say whatever I am thinking. I always have, but to me it seems as if I am having to hold back more often - if I hold back. I have no problem telling someone on their cell phone in the grocery store who just stops in the middle of the isle to, "Hang up and shop!" Related to this: Little things can really upset me. Sometimes making me angry, but sometimes a free-floating anxiety. This also has been happening more frequently, and I will discuss it with  my physician on my next visit if it persists, and I remember.

I am still driving. I couple weeks ago I pulled out of a parking lot, and was almost hit by another car that crashed the light. It turns out that it was a funeral procession, and I cut right into the middle of it. I was really upset at the time. In retrospect there was no escort car with flashing lights, and the little flags on the cars were hidden below a roof rack, and most importantly there was a huge gap in the procession so it appeared the intersection was clear. Cindy and I discussed it at length afterwards, and came to the conclusion that it was just one of those things, but I am ever vigilant about my driving. Driving requires multitudes of decisions, and making decisions gets a little more difficult each year. So far I am doing OK, but that incident was scary and really made me do some evaluation.

My sleep patterns are all messed up. I rarely get an uninterrupted night's sleep. Usually I sleep for a few hours, then get up for a few hours, then go back to sleep. I often take an afternoon nap. Around 3-4 PM I get very tired. I think this is a side effect of the medications I am taking, but sleep disorders of all kinds are prevalent with bvFTD and most other dementias.

The biggest changes I have noticed are in my motivation, and in my speech. One of my most debilitating symptoms is not being able to make myself do anything. Thinking about doing something is just as good, if not better, than actually doing it. I just cannot get started, and this has definitely gotten worse in the past year. The fact that it has been below freezing for a month, and was negative 12 degrees last night might have some influence on my not wanting to poke my nose out the door. I am also more anti-social, but I think that is related somehow. I fumble around for a word, or cannot remember a name or title much more often that before. This is still not debilitating, but it is now becoming more noticeable as it is an almost daily occurrence.

This winter Gracie became my official licensed service dog.
I started reading early last year. Long ago I was a voracious reader. When my eyesight started to fail I stopped reading except for work. Then, after my diagnosis, when I tried reading again I had great difficulty remembering what I had just read. I was incapable of following a story. This has actually improved. My guess is that it is a direct result of the Ritalin. Whatever the reason, as long as I set the print fairly large on my Kindle I am able to read. I remember most of what I read in general, though some books are better than others. I will remember one really well, and another I re-read as if I had just skimmed it the first time. I have not really tested this yet, but I plan to revisit a few books as a test ...when I get around to it.

I am still taking Aricept at 20mg/day, and Namenda at 20 mg/day, and Ritalin at 20 mg/day. I have been taking these 3 drugs for 4 years and some change. Yes! They have some side effects, but in my opinion the benefits are well worth it for me. I have had to add glyburide/metformin 2.5/500 (2 pills twice a day for a daily dose of 10/2000 - if my arithmetic is right.) I probably forget to take my medications at least one or two days a month, but I do not use any reminders other than keeping them in plain sight in the kitchen. I have been lax over the past 6 months in taking any supplements, but I have a couple bottles of Lion's Mane Extract on order, so shall be taking that again in about a week. (They arrived as I was writing this, and I am taking them now.) I seem to take it about 3-4 months out of each year. I would take more if I could afford it.this

I have gained some weight. Actually, I have just kept the weight on which I gained over the past couple years. Most of the medications I take are associated with weight gain. That is a good excuse. Since no matter how little I eat I seem to be unable to lose more than a couple pounds, I am guessing the medications do have an impact, but I may also be craving carbs. I am also getting just about zero exercise. It is a common symptom of bvFTD to crave carbs and show an associated weight gain. I do find myself snacking more in the evenings. This may be a symptom, but I have always craved salty snacks in the evening. Now thisthat I am old it is making me fat.

I realized that I have Tardive Dyskinisia. I realized it a few months ago. Tardive Dyskinisia is an involuntary muscle spasm. In my case it is in my jaw. I found myself tapping my teeth together. This is different from grinding or clenching the jaws at night. This happens to me all the time. I am not aware of it most of the time, then I will realize that I am doing it. I can will it to stop for a while, but not for long. By the time I realized what was going on the damage was done. My teeth have been worn down from all the tapping. I will eventually need some major dental work to repair the damage, but it would be a waste to do anything while the problem persists.

Tardive Dyskinisia is caused by medications. Usually it is caused by the drugs used to treat depression or psychosis. In my case it is likely caused by the Aricept and Namenda. What a trade-off. Tardive Dyskinisia is a temporary condition - at first! If allowed to continue it usually becomes permanent. OOPS!this

Though fatigue is frequently mentioned as a symptom of most forms of dementia including bvFTD, I have never really had much of an issue with it until recently. Just yesterday we were out shopping, and suddenly I got so tired feeling that I could barely drag my feet. I felt like I was staggering along. We ended the shopping trip early. When I got home I took my blood sugar because the fatigue I felt was similar to a very low level. My blood sugar was actually slightly elevated. I took my blood pressure, too. It was well within the normal range ...actually quite good for my age. After resting a couple hours I felt fine. It came on rather suddenly, and then just went away. I have had these bouts of extreme fatigue a few times over the past months. They are quite severe, and disabling. With all the other challenges dealing with bvFTD, this one is posing a problem. I am hoping it is temporary. Time will tell.


Some days are better than others, and after 5 years any days are good days.







Friday, January 30, 2015

Benadryl and Dementia ...again!

 I have long suspected that some antihistamines have some nasty short-term affects on my bvFTD symptoms. Now there seems to be some concrete research supporting the long term usage of antihistamines as a possible contributing factor to dementia. I found the following article on the Science Daily website.

AAAAAARGH! I still take them now and then.


Higher dementia risk linked to more use of common drugs
Date: January 26, 2015
Source: Group Health Research Institute

Summary:
A large study links a significantly increased risk for developing dementia, including Alzheimer's disease, to taking commonly used medications with anticholinergic effects at higher doses or for a longer time. Many older people take these medications, which include nonprescription diphenhydramine (Benadryl).


A large study links a significantly increased risk for developing dementia, including Alzheimer's disease, to taking commonly used medications with anticholinergic effects at higher doses or for a longer time. Many older people take these medications, which include nonprescription diphenhydramine (Benadryl). JAMA Internal Medicine published the report, called "Cumulative Use of Strong Anticholinergic Medications and Incident Dementia."

The study used more rigorous methods, longer follow-up (more than seven years), and better assessment of medication use via pharmacy records (including substantial nonprescription use) to confirm this previously reported link. It is the first study to show a dose response: linking more risk for developing dementia to higher use of anticholinergic medications. And it is also the first to suggest that dementia risk linked to anticholinergic medications may persist -- and may not be reversible even years after people stop taking these drugs.

"Older adults should be aware that many medications -- including some available without a prescription, such as over-the-counter sleep aids -- have strong anticholinergic effects," said Shelly Gray, PharmD, MS, the first author of the report, which tracks nearly 3,500 Group Health seniors participating in the long-running Adult Changes in Thought (ACT), a joint Group Health-University of Washington (UW) study funded by the National Institute on Aging. "And they should tell their health care providers about all their over-the-counter use," she added.

"But of course, no one should stop taking any therapy without consulting their health care provider," said Dr. Gray, who is a professor, the vice chair of curriculum and instruction, and director of the geriatric pharmacy program at the UW School of Pharmacy. "Health care providers should regularly review their older patients' drug regimens -- including over-the-counter medications -- to look for chances to use fewer anticholinergic medications at lower doses."

For instance, the most commonly used medications in the study were tricyclic antidepressants like doxepin (Sinequan), first-generation antihistamines like chlorpheniramine (Chlor-Trimeton), and antimuscarinics for bladder control like oxybutynin (Ditropan). The study estimated that people taking at least 10 mg/day of doxepin, 4 mg/day of chlorpheniramine, or 5 mg/day of oxybutynin for more than three years would be at greater risk for developing dementia. Dr. Gray said substitutes are available for the first two: a selective serotonin re-uptake inhibitor (SSRI) like citalopram (Celexa) or fluoxitene (Prozac) for depression and a second-generation antihistamine like loratadine (Claritin) for allergies. It's harder to find alternative medications for urinary incontinence, but some behavioral changes can reduce this problem.

"If providers need to prescribe a medication with anticholinergic effects because it is the best therapy for their patient," Dr. Gray said, "they should use the lowest effective dose, monitor the therapy regularly to ensure it's working, and stop the therapy if it's ineffective." Anticholinergic effects happen because some medications block the neurotransmitter called acetylcholine in the brain and body, she explained. That can cause many side effects, including drowsiness, constipation, retaining urine, and dry mouth and eyes.

"With detailed information on thousands of patients for many years, the ACT study is a living laboratory for exploring risk factors for conditions like dementia," said Dr. Gray's coauthor Eric B. Larson, MD, MPH. "This latest study is a prime example of that work and has important implications for people taking medications -- and for those prescribing medications for older patients." Dr. Larson is the ACT principal investigator, vice president for research at Group Health, and executive director of Group Health Research Institute (GHRI). He is also a clinical professor of medicine at the UW School of Medicine and of health services at the UW School of Public Health.

Some ACT participants agree to have their brains autopsied after they die. That will make it possible to follow up this research by examining whether participants who took anticholinergic medications have more Alzheimer's-related pathology in their brains compared to nonusers.

Story Source:

The above story is based on materials provided by Group Health Research Institute. Note: Materials may be edited for content and length.

Journal Reference:

    Shelly L. Gray, Melissa L. Anderson, Sascha Dublin, Joseph T. Hanlon, Rebecca Hubbard, Rod Walker, Onchee Yu, Paul K. Crane, Eric B. Larson. Cumulative Use of Strong Anticholinergics and Incident Dementia. JAMA Internal Medicine, 2015; DOI: 10.1001/jamainternmed.2014.7663

Group Health Research Institute. "Higher dementia risk linked to more use of common drugs." ScienceDaily. ScienceDaily, 26 January 2015. .
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