Today I’ll respond to 2 recent comments.
1. no1daughteroflewydad submitted on 2009/02/22 at 7:44pm
Hhahahahahaha that’s wonderful.
I was thinking about what you said about exercising and know that where you live is extremely cold. You are computer/technical savvy so what about the Wii games.
I have heard people speak highly of them. So I had a bit of a search and from what I can see here’s a couple:
Wii Sports: includes Baseball, Tennis, Bowling, Boxing and Golf games for the Nintendo Wii..sounds like fun.
Wii Fit; uses the Wii Balance Board, a pad that players stand on while doing various types of exercise, including calisthenics, yoga, and balancing.
You could treat yourself, have fun and a laugh and excercise too.
Just a thought, cheers.
Interesting that you mention this. We are on the same wave length. I’ve been reading all about the Wii. Pam’s brother and his wife (Scott & Kelly) bought this game for their 2 boys (Austin & Ryan) for Christmas. Kelly ends up using it more than the boys. She swears by it to the point that she goes to the gym far less often now.
I put this on my wish list for Santa Claus. It is truly an expensive product. Normally, I would have already purchased this but it’s too expensive for us now. I never had personal medical disability insurance but did have it through my employer in CA. Fortunately it kicked in but even with it, our income has dropped by 90%. I always heard that whatever one’s level of income is, one can not go back. We are examples of, “Yes, you can go back.” I was taught growing up that God meets all of our needs. Not necessarily all of our wants. We have a roof over our heads, warmth, clothing, food, water, etc. We no longer eat out but that is not a need. Coupons are now a part of our life and Chad helps us out as well. I am not at all complaining. We are indeed blessed. I think of all the families who are now being laid off from work and have no income whatsoever, thanks to some greedy folks in this country. My heart goes out to them. If we save up slowly, I think we can get one over the next year of so. After all, we all need something to look forward to!
2. Sally Pacholok submitted on 2009/02/19 at 10:05am
I received a Google alert regarding your blog because you mentioned pernicious anemia. I am the co-author of the book, “Could It Be B12? An Epidemic of Misdiagnoses,” Quill Driver Books, 2005. I have been researching vitamin B12 deficiency/autoimmune pernicious anemia for over 20 years and out of frustration co-authored this book with my husband who is board-certified emergency medicine physician.
I realize you have been diagnosed with LBD, but I am wondering what your serum B12 level was at the time of diagnosis (10/07), did your physician include a urinary methylmalonic acid (uMMA) test and homocysteine to rule out B12 deficiency?
The medical and health care community has a major knowledge deficit regarding B12 deficiency. We have encountered many patients diagnosed with dementia who really had a B12 deficiency. One woman wrote to us regarding her 54 year old husband who was diagnosed with CBGD. Turns out he had a B12 deficiency—-on a proton-pump inhibitor for 20 years. He started agressive B12 therapy–and has improved greatly, but still has some deficits.
Even if you are on B12—-make sure it is high dose, this in itself you may find helpful in improving your signs and symptoms—(methyl-B12 5,000mcg lozenges daily)—-your could also try hydroxocobalamin injections. If you are not on high dose B12 or injection—–get yourself tested, before you start taking B12. Contrary to most doctors education, you do NOT have to be anemic or macrocytic to have a true B12 deficiency.
Norman Clincial Lab in Ohio does this test, as well as other reference labs across the country. NCL website is http://www.b12.com.
If you like—email me at the above email address and I will be pleased to guide or help you in any way possible.
We have also found that patients with dementia on high-dose SL B12 were calmer, better mood, and their dementia did not get worse.
The problem is some patients who have dementia have a true B12 deficiency, but if it had gone untreated for some time–and injury occurred, their brain is not going to improve, therefore many studies incorrectly report that B12 does not improve dementia. Yet there are reports in the medical journals where patients were diagnosed with dementia early on —were found to have a B12 deficiency and treated, and some completely reversed. Every patient with beginning dementia, diagnosed with dementia, or Alzheimer’s deserve to have B12 deficiency properly ruled out.
In addition, B12 deficiency causes frequent falls—and we see an array of elderly coming in with hip fractures and other bone fractures—that we test in the ER—and have a true B12 deficiency. We are wasting billions of health care dollars and injurying millions of people because of this ignorance. The standard of care needs to be changed, and that is our goal.
Sally Pacholok, R.N., BSN
I think Sally has some good points. I had the complete dementia evaluation at UCSF, so I dug out my records of all the lab test which the dementia experts ordered. Indeed, I did have the MMA and homocysteine levels performed, both of which were normal.
I’ve researched this as well as having spoken with some hematologist friends of mine. My summary findings is:
Increased methylmalonic acid levels may indicate a vitamin B12 deficiency. However, it is sensitive without being specific. MMA is elevated in 90-98% of patients with B12 deficiency. This test may be overly sensitive, as 25-20% of patients over the age of 70 have elevated levels of MMA, but 25-33% of them do not have B12 deficiency. For this reason, MMA is not routinely recommended in the elderly. An excess is associated with methylmalonic acidemia. MMA concentrations in blood are measured by Gas chromatographic Mass spectrometry.
I am by no means discounting what Sally is saying. I applaud and respect her and her husband for writing their book. Their are some truths to it, I’m sure.
Just like other theories and the multiple articles written about coffee, tea, gingko, chocolate along with dozens of other good ideas, I speculate that this is yet another one of those controversial topics which needs further research when it comes to dementia. Of course, this is only my opinion. I have been wrong many times in the past. I thank Sally for making this valuable comment.
Filed under: Caregivers for Individuals with Dementia, Dementia, Dementia News Updates, Lewy Body Dementia, Miscellaneous | Tagged: Alzheimer’s, B-12 deficiency, exercise, hydroxocobalamin, methylmalonic acid, Wii | 9 Comments »