National Neurological Diseases Surveillance System Act

Great news! Congress has heard your requests and the House of Representatives unanimously passed H.R. 1362, the National Neurological Diseases Surveillance System Act! This system will provide researchers and epidemiologists with a coordinated system of health data on neurological diseases and should fuel further research into neurological disorders like LBD. To make this data system a reality, the Senate must now take action on S. 1273. Please urge your Senators to support Senate passage of S. 1273 this Congress. Click here to tell Congress about LBD today!

My response to: Anyone have experience with Psychiatrists being used for LBD patient?

I received this email this morning from LBDcaregivers@yahoogroups.com. My response follows this copy of the email.

Anyone have experience with Psychiatrists being used for LBD patient   Posted by: "drh488" Wed Nov 18, 2009 3:17 pm (PST)

Today we had a Psychiatric nurse visit Mom. By the time she left, she had my mother so emotionally upset that she is ready to go back to a nursing home and die. She brought up things to my mother that happened 30 years ago and hasn’t been discussed in 20 years. Our battle with the outside caregivers has turned into a social worker telling us that WE have become Lewy body dementia. Our extreme efforts to make people understand the disease has taken the place of taking care our mother. Our mother does best when she has structured days. Up at 6, breakfast at 8, regis at 9, lunch at noon….etc. Anything out of that structure causes problems with her. This company sends occ. therapy, phys therapy, and a nurse. We have explained time and time again that our Mom needs structure. To no avail we wont here from them for 3-4 days then they call saying "We are on our way". Next thing you know, 3 people in one day unexpected. My sister is so frustrated. Psych nurse told my Mom that she has LBD, what it is and everything. Brought up old memories of my sister dying, my dad dying. Then she leaves with my mom all upset and my sister to deal with it. Psych nurse wont be back for 2 weeks. I’m calling my Mom’s neurologist tomorrow to see if she should be talking to this psycho nurse…no pun intended….It seems to me that it is more destructive than constructive.  Interested if anyone has had similar experiences Thank You

I felt appalled as I read this post. It goes to show that not all educated individuals use good old fashioned common sense. Even a small child realizes something isn’t right when they see someone being hurt and being in distress.

As an aside, I should mention that dementia is not only a neurological diagnosis but is also an official psychiatric diagnosis.

Unfortunately, in spite of being taught to first DO NO HARM to a patient, medical professionals don’t always have good common sense either. One doesn’t always learn certain things from medical, psychology and nursing books.

Having said this, there is not excuse for someone to get someone upset like this. Psychiatrists, psychologists and psychiatric nurses are taught that certain mental health diagnoses should not be treated with traditional psychotherapy such as schizophrenia and dementia. These disorders are treated with supportive psychotherapy, not with insight-oriented psychotherapy as described in the email.

What good does it do to dredge up the past with someone who has dementia? How can it be helpful? I certainly don’t know. However, if an individual unsolicitedly brings up past memories, that is fine. They can be dealt with in a supportive way whether positive or negative. And reminding someone of past positive memories can be therapeutic as well. But to stir up past memories in any of us against our will is certainly cruel in my opinion.

So, yes, this behavior is undoubtedly more destructive than constructive. Definitely confront the involved providers and request them to discontinue this type of communication and involvement. If it doesn’t stop, go to the next level, etc. If it continues, and if it is possible, go somewhere else! If it smells like a duck, quacks like a duck and walks like a duck then it is a duck………….

This makes me wonder. How many of all caregivers, professional and non-professional unwittingly aggravate and/or cause some of the argumentativeness, irritability and combativeness seen in the dementia population?

I’d be interested to hear of others’ thoughts and opinions.

Warmly………….David

Donna says, “I really hope that I am helping and not hurting him”

COMMENT from Donna on the “I’m forgetting to eat” post.

Submitted on 2009/10/12 at 12:54pm

David,
I thank you for sharing!  I was researching DLB for information for my siblings when I came across your posting.  We lost our mother a year ago.  She had Alzheimers, but breast cancer is what took her Sept 2008.  Before she passed, our father was diagnosed with Lewy Body.  Since then, my husband and I have moved in with dad, so he wouldn’t be alone at night.  We all live realatively close to dad (all but one of 5 within 7 miles).  My husband and I both work full time, he is retired from the military and now teaches, I am in the Air National Guard working full time.
I see the fog that my dad is in, and it kills me that he is alone for the better part of the day.  I have done some research to educate me on what my dad is experiencing.  I am hoping that my siblings will step up to the plate and spend some time with dad, understand what he is going thru to help him.  When my dad halucinates, at night, I always anounce myself before I go into his room, and then I ask him to ask the people to leave, he usually says they are gone, only once has he said they are right there, when I say it is time to leave so we can go back to sleep.  Then I reasure dad that I have check the house and all the doors are locked and we are the only ones left in the house. I really hope that I am helping and not hurting him. Yesterday was the Race for the Cure, which my husband and I participated in.  Before we got back to dads house, he called and stated that he couldn’t find mother, but that she was there 5 minutes ago.  It really hurt for me to tell him that she has
been gone for over a year.
I have rambled enough.  Thank you for your explaniation of the fog that I have seen my father in.  God Bless you and keep you safe, I have added you to my prayer list as well.
Donna K

Hi Donna…………….I am sorry about your father. If it were me, I think I’d want you to do the same thing. Simple reassurance is a marvelous treatment! Even if the hallucinations persist when you go into the room, I would suggest that you don’t argue. Sometimes simple distracting comments help. Thumbs-up

Warmly…..David

Reply to Laura Fisher, M.D.

Dear Dr.         Have you tried the coconut oil Dr. Mary Newport has described as a miracle treatment for her husband? Do you take fish oil (three or more caps per day)? Do you take testosterone replacement (skin gel)? Do you take selegiline or rasagiline? What if any vitamins and other supplements do you take? It is not completely clear to me how you were diagnosed. Was it based on an MRI coupled with some behavioral and subjective changes?
My father died in his eighties of combined LBD and Alzheimer’s disease and I am trying not to follow his example.
Sincerely,
Laura Fisher

Hi Dr. Fisher……………No, I have not tried the coconut oil. I need to study more about it. I am on Aricept 10-mg daily, Namenda 10-mg twice daily, 9 capsules of double strength fish oil, testosterone replacement therapy along with trazodone (for sleep). I take multivitamins, calcium and magnesium supplements along with vitamin D and B-complex daily. When I think about it, I take a vitamin E capsule as well. I’ve not gone overboard with all that’s recommended out there. Ah, yes. I do like my coffee in the morning and the good old home made iced tea!

I am now on a steady plateau with the above combination and am permitted to drive as long as I have a co-pilot with me. I’ve noticed the biggest difference since adding the Namenda to my regimen. I do find I slip backwards if I don’t use the testosterone replacement therapy. I’d love to be able to practice medicine again but have not totally come back to my base level. I still have enough deficits to keep me from totally functioning normally. I do well with regular activities of daily living as long as there is little pressure. Hobbies, crafts, gardening, TV, etc. Short term memory and immediate recall are still some problems for me as well as word finding difficulties.

I was diagnosed at the University of California, San Francisco’s Memory Clinic after being hospitalized for the entire evaluation. I following an LBD expert neurologist in Pittsburgh, PA. Pet scans of the brain have also shown the pathological changes as well.

I’ve never specifically been treated for my Parkinsonian symptoms. Azilect would certainly be something to discuss with my neurologist. During my last visit, he did mention starting an anti-Parkinsonian agent but I would like to hold off on that as long as possible.

Hope this helps……

Warmly………….David

LBDA Commercial to be Seen by Millions

A message from the Lewy Body Dementia Association:

 

Hut, Hut, Hike!

Join with us this month to watch a special message from the Lewy Body Dementia Association during the television broadcast of the Pro Football Hall of Fame Enshrinement Festival’s Timken Grand Parade Aug. 8 in Canton, Ohio.

This special 30-second commercial on Lewy body dementia is the first of its kind to be shown nationally. The parade will be
available in more than 81 million households throughout the
month of August – click the link below for information on your local station’s airdates and times:

Thank you to the Bankert family and all who have helped make
this incredible opportunity possible, and to you for joining with us as we Increase Knowledge, Share Experience and Build Hope for all those affected by LBD in more ways than ever before!

To CAREGIVERS — Live Webinar: Betwixt and Intermixed—Dementia With Lewy Bodies

Friends,

I wanted to pass along an exciting announcement about an upcoming webinar on dementia with Lewy bodies, by the Alzheimer’s Research Forum.  This is free to the public, so please pass the word!

Live Webinar: Betwixt and Intermixed—Dementia With Lewy Bodies

http://www.alzforum.org/../../images/spacer.gif

By some estimates, some one to two million people in the U.S. alone are suffering from dementia with Lewy bodies (DLB), a disease that combines features of AD and of PD with additional symptoms that arise from their combined protein pathologies. All this adds up to a double whammy of a neurodegenerative disease, and researchers from both AD and PD proper are developing an active interest to understand it, diagnose it better and earlier, and find molecular or imaging biomarkers. Join DLB experts Ian McKeith, Brit Mollenhauer, James Galvin, James Leverenz, and Walter Schulz-Schaeffer for a discussion of the large and often overlooked overlap between Alzheimer and Parkinson diseases. Join us on Monday, 15 June 2009, noon to 1 p.m. EST for this Webinar on dementia with Lewy bodies.

Thanks,

Angela Taylor

LBDA

A good article on LBD written by a caregiver

Lewy Body Dementia What is it? by Grace A. Holcombe, wife to Donald L. Holcombe

A well written article worth reading—

 

Warmly………David

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Should we get more or less sleep?

I’ve had a different day today. Felt anxious, bored (unusual for me), antsy and a little bummed. A little lazy. Not sure why. Maybe just a combination of factors. I don’t have the energy to write this blog consistent with my other obsessive compulsive blogs.

I see that Agatha Christie had undiagnosed Alzheimer’s disease. I read an article where linguists did intense studies of her writings over the years and noticed that her vocabulary gradually decreased and she began to use more generic words such as them, those, things, etc.

Just logged off a website which now says that too much sleep can be a factor in the cause of dementia. And all these years, we’ve been told that most of us are sleep deprived and that we should get more sleep. What do you all think?

A very good friend of ours called me today from Pittsburgh. Her husband has AD and is quickly declining. It turns out we both have the same neurologist. We mainly talked about how she needs to care for herself and to get nurtured by other caregivers which she is doing. But the sad thing for me is that her hubby has been a sharp and smart guy. An engineer by training. Makes me feel sad.

As I sit here typing, I feel like I am tired of researching and reading about dementia. What I read seems to either discourage me or make me feel more frightened inside. Lately, I obsess about LBD, its course, its progression in other and in me. The slow subtle changes which only I notice internally. Using less vocabulary words since it’s hard to find the right word. Making up some words and adjectives. I guess that’s good. I can still improvise and cover up my slow downhill changes. I just read another article from the Mayo Clinic today which says the average life span after the onset of LBD is about 8 years. I have read 7 from other sources. Yes, I know everyone is different and that the new drugs are helpful. It’s been about 4 years or so for me since the onset of my symptoms. I am trying to remain positive and tell myself that statistics are just that. Statistics. Not the Golden Rule.

I just wish that everyone with any type of dementia could be able to share their feelings. Of course, that isn’t possible. It would help others. And it would help caregivers understand more of the thoughts and feelings which go through our minds.

I’m not asking for nice comments and encouraging words. Just a piece of my heart today.

Interesting. As I’m typing Robin just posted a comment saying, “My mother has had alzheimers for 17 years. The doctor has recommended we stop feeding her. He said the alternative will be she will asperate and get pnemonia. My question is which will be less painful for my mother. Dying from pnemonia or dying from withholding food and fluid.”

OK. That made me realize I need to stop the self pity right now.

Robin…………..I haven’t a clue as to how to answer that. It’s a heavy question and I don’t envy you. One of those bioethical dilemmas which people dabate about constantly. But I will pray for both you and your Mom.

Would the rest of you please jump in and share your thoughts with her. I think she’d appreciate it very much.

 

Warmly……….David

20 tips to help ward off dementia — ah, yes. Check out the little joke at the bottom

I can relate to 15 of these tips. All I can think of is that they must have staved off my developing LBD (Lewy Body Disease) at an earlier age. This, I will never know. I think it also tells us something about dementia. There have to be other factors involved other than these tips. Otherwise, people who have beefed up their brain by doing many of these tips, along with others (foods, etc.) which I’ve posted along the way, should be the last who would develop dementia. Why do some people live to be over 100 years old have a clear, solid mind when they have taken on few of these ideas? Again, will anyone ever truly know. There is so much more involved in this very complex syndrome called dementia.

The more I study about dementia, the more I realize that its prevalence has caused many of us to look at anything and everything as the culprit to this disease. But this is good. When we stop searching, we die.

 

20 tips to help ward off dementia           By Linda Shrieves

Timing is everything, comedians say.

It’s also important when it comes to taking care of your brain. Yet most of us start worrying about dementia after retirement — and that may be too little, too late.

Experts say that if you really want to ward off dementia, you need to start taking care of your bean in your 30s and 40s — or even earlier.

"More and more research is suggesting that lifestyle is very important to your brain’s health," says Dr. Paul Nussbaum, a neuropsychologist and an adjunct associate professor at the University of Pittsburgh School of Medicine. "If you want to live a long, healthy life, then many of us need to start as early as we can."

So what can you do to beef up your brain — and possibly ward off dementia? Nussbaum, who recently gave a speech on the topic for the Winter Park (Fla.) Health Foundation, offers 20 tips that may help.

1. Join clubs or organizations that need volunteers. If you start volunteering now, you won’t feel lost and unneeded after you retire.

2. Develop a hobby or two. Hobbies help you develop a robust brain because you’re trying something new and complex.

3. Practice writing with your nondominant hand several minutes every day. This will exercise the opposite side of your brain and fire up those neurons.

4. Take dance lessons. In a study of nearly 500 people, dancing was the only regular physical activity associated with a significant decrease in the incidence of dementia, including Alzheimer’s disease. The people who danced three or four times a week showed 76 percent less incidence of dementia than those who danced only once a week or not at all.

5. Need a hobby? Start gardening. Researchers in New Zealand found that, of 1,000 people, those who gardened regularly were less likely to suffer from dementia. Not only does gardening reduce stress, but gardeners use their brains to plan gardens; they use visual and spatial reasoning to lay out a garden.

6. Buy a pedometer and walk 10,000 steps a day. Walking daily can reduce the risk of dementia because cardiovascular health is important to maintain blood flow to the brain.

7. Read and write daily. Reading stimulates a wide variety of brain areas that process and store information. Likewise, writing (not copying) stimulates many areas of the brain as well.

8. Start knitting. Using both hands works both sides of your brain. And it’s a stress reducer.

9. Learn a new language. Whether it’s a foreign language or sign language, you are working your brain by making it go back and forth between one language and the other. A researcher in England found that being bilingual seemed to delay symptoms of Alzheimer’s disease for four years.

10. Play board games such as Scrabble and Monopoly. Not only are you taxing your brain, you’re socializing too. (Playing solo games, such as solitaire or online computer brain games can be helpful, but Nussbaum prefers games that encourage you to socialize too.)

11. Take classes throughout your lifetime. Learning produces structural and chemical changes in the brain, and education appears to help people live longer. Brain researchers have found that people with advanced degrees live longer — and if they do have Alzheimer’s, it often becomes apparent only in the very later stages of the disease.

12. Listen to classical music. A growing volume of research suggests that music may hard wire the brain, building links between the two hemispheres. Any kind of music may work, but there’s some research that shows positive effects for classical music, though researchers don’t understand why.

13. Learn a musical instrument. It may be harder than it was when you were a kid, but you’ll be developing a dormant part of your brain.

14. Travel. When you travel (whether it’s to a distant vacation spot or on a different route across town), you’re forcing your brain to navigate a new and complex environment. A study of London taxi drivers found experienced drivers had larger brains because they have to store lots of information about locations and how to navigate there.

15. Pray. Daily prayer may help your immune system. And people who attend a formal worship service regularly report happier, healthier lives.

16. Learn to meditate. It’s important for your brain that you learn to shut out the stresses of everyday life.

17. Get enough sleep. Studies have shown a link between interrupted sleep and dementia.

18. Eat more foods containing omega-3 fatty acids: Salmon, sardines, tuna, ocean trout, mackerel or herring, plus walnuts (which are higher in omega 3s than salmon) and flaxseed. Flaxseed oil, cod liver oil and walnut oil are good sources too.

19. Eat more fruits and vegetables. Antioxidants in fruits and vegetables mop up some of the damage caused by free radicals, one of the leading killers of brain cells.

20. Eat at least one meal a day with family and friends. You’ll slow down, socialize, and research shows you’ll eat healthier food than if you ate alone or on the go.

I had signed up to be a school volunteer…

– Howard Sieplinga

I had signed up to be a school volunteer and was helping a first-grader with her homework. But it turned out I was the one in need of help. The assignment required coloring, and I’m color-blind — can’t tell blue from red. As we finished our lesson, I told the little girl, "Next week you can read to me."


Looking confused, she said, "Can’t you read, either?"

 

Warmly………David

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Alphainventions

Hobbies and Delay of Memory — Woodwork Crochet Reading TV Computer Games Quilting Counted Cross Stitch Knitting Beading Art Collecting

Be careful with this one and please do not LAUGH


Standing guard at a NATO installation in South Korea, I saluted salutesalvarmyofficers from all around the world. But one officer, dressed in a regal-looking black uniform, always seemed embarrassed by it. One day as I was putting right hand to forehead, he stopped me.

“You really don’t have to salute me,” he said. “I’m in the Salvation Army.”

Stanley Pierkowski

Yesterday was one of those discouraging days. Not only did I feel foggy, but I had difficulty coping with the body, hand and neck tremors. The Dr. told me to lie? lay? down whenever I get tremulous. But it sure didn’t work yesterday. They wear me down and I get fatigued. It was a very frustrating day. I’m beginning to have more empathy to others with chronic tremors. I know it’s part of LBD, but part of me wants to get tested again to see if I have an an underlying thyroid problem. Maybe I’m just grasping at straws.

Speaking of tremors and the article below, it is interesting. I’ve done crafts all of my life. If it’s true, then I shouldn’t be having any problems. I’m working on a project now that involves counting in multiples of 12. I can’t believe I’m actually having trouble counting at this level. Appalling, just appalling.

Why hobbies such as knitting may delay memory loss

Engaging in a hobby like reading a book, making a patchwork quilt or even playing computer games can delay the onset of dementia, a US study suggests. Watching TV however does not count – and indeed spending significant periods of time in front of the box may speed up memory loss, researchers found.

Nearly 200 people aged 70 to 89 with mild memory problems were compared with a group who had no impairment.

The findings are to be presented to an American Academy of Neurology meeting. The researchers from the Mayo Clinic in Minnesota asked the volunteers about their daily activities within the past year and how mentally active they had been between the age of 50 to 65.

Those who had during middle age been busy reading, playing games or engaging in craft hobbies like patchworking or knitting were found to have a 40% reduced risk of memory impairment. In later life, those same activities reduced the risk by between 30 and 50%. Those who watched TV for less than 7 hours a day were also 50% less likely to develop memory loss than those who spent longer than that staring at the screen.

This study is exciting because it demonstrates that ageing does not need to be a passive process, said study author and neuroscientist Dr Yonas Geda.

By simply engaging in cognitive exercise, you can protect against future memory loss. Of course, the challenge with this type of research is that we are relying on past memories of the participants, therefore we need to confirm these findings with additional research.

Sarah Day, head of public health at the Alzheimer’s Society said: One million people will develop dementia in the next 10 years so there is a desperate need to find ways to prevent dementia. Exercising and challenging your brain – by learning new skills, doing puzzles such as crosswords, and even learning a new language – can be fun.

However, more research, where people are followed up over time, is needed to understand whether these sorts of activities can reduce the risk of dementia.

The poll on brain games will close on March 8th. If you haven’t voted yet, click here.

Warmly………David

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