Life Story With Neuropathy

Today's post is a personal account of life with neuropathy from neuropathyawareness.blogspot.com/2011/11/living-life-with-peripheral-neuropathy (see link below). I am sure that many people will identify with many of the experiences described here and may wish to join the 'Support for Neuropathy' group highlighted on the original page.

Living Life with Peripheral Neuropathy
Monday November 7th 2011

Living life with peripheral neuropathy has been a challenge for sure! I never would of thought that my life would revolve around being in chronic pain 24/7. One day I was in great health and the next it was all taken away from me in Jan 2001. Before all this I had never heard of peripheral neuropathy so when I was told that this was my diagnosis and it was permanent with no cure I just about lost it! I remember thinking how can no cure be available and no specific medicine for neuropathy be available. When my neuropathy symptoms first started it came on strong and on a pain scale the pain was a 10 and still is, but controlled with medications/narcotics. So now my life also revolves around being on heavy narcotics and this is someone who never took anything besides a asprin before all this! Even with being on heavy narcotics I still have pain and some days are very bad! I take medicine that is given to cancer patients and still can't get pain control on some days. That is just crazy to me and something has to be changed! We need help spreading the word about PN so a cure can be found. No one should have to live there life in chronic pain! No one can understand what its like to live like this unless they have it personally. It takes over your mind and controls everything you do from spending time with family or friends. It follows you everywhere and is always a constant reminder that you have PN. As bad as my life can be with having PN I have found its the little things that can make me happy. Little things like the smell of a flower or watching a new flower grow, enjoying my morning coffee, my fragrant candles, a new recipe etc and best of all being a great mom! I have had time over the years to accept this is the new me and its how it is. Of course I have days that I get depressed, but I try and think tomorrow will be a better day! I'm so glad to have the support from the group called Support for Neuropathy that I joined on facebook. For about 9 out of the 11 years of having PN I had no support and it was very lonely. I have meet many caring and awesome friends in my support group and I'm very thankful to have them all!!

Written by Michelle Cornell Monroe, Support for Neuropathy member

http://neuropathyawareness.blogspot.com/2011/11/living-life-with-peripheral-neuropathy.html

Vitamins Supplements for a Healthy Life

Ever since we were kids, adults have preached the importance of vitamins for strong and healthy bodies. From school lessons to television programs most children know the basic vitamins: A, B, C, D and E. However, as adults the role vitamins play in our lives takes on a whole new meaning. The skincare and anti aging industry learned long ago the impact that certain vitamins can have on the complexion and even the aging process. Out of the vitamins we need, you’ll want to get to know the vitamin B family, which has a huge laundry list of responsibilities.

Most people that are not very skincare or health savvy might be very surprised to know that there is not just one vitamin B. There is, in fact, an entire family of B vitamins - all of which play their own roles in keeping the human body functioning properly. Once you become familiar with what the vitamin B family does, you’ll want to make sure they’re in your life on a daily basis.

The vitamin B family is made up of the following: B1, B2, B3, B4, B5, B6, B7, B8, B9 and B12. This fairly large group of vitamins has responsibilities ranging from keeping the immune system intact, promoting healthy nerves, providing energy, improving memory, focus and proper circulation, to name a few. However, some of the B vitamins also have the ability to make a positive impact on your complexion. These days it is not uncommon to see B vitamins listed somewhere on a majority of skincare and anti aging products on store shelves. While not all of the B vitamins listed work to benefit a person’s complexion, there is a few that stand out and are the darlings of the skincare and anti aging industry.


Vitamin C improves the physical and mental health by assisting the functioning from the immune system. B complex vitamins like niacin, folate, thiamine, riboflavin and pantothenic acid may help in the production of Neuro transmitters. Magnesium can assist in the muscle relaxation and so provide greater relief from anxiety. Tryptophan helps in the enhancement from the nervous system while Coenzyme Q10 adds to the oxygen transport in the tissues. Omega 3 is a vital item that helps to reduce the anxiety. , Alpha Linolenic acid is really a vitamin that provides Omega 3. The retina needs vitamin A for color and low light vision. This vitamin will be the appropriate hormone functions. We could reduce the risk of oral and carcinoma of the lung by consuming vitamin A.

For the processing of fats, protein and carbohydrates vitamin B1 is crucial. It will also help- in the proper functioning in the nerve cells. It is going to stabilize appetite and generates energy. Vitamin B2 works well for the formation of antibodies and red blood cells and therefore prevents anemia. Vitamin C and E reduces the aging of the skin. It assists to to heal fractures, wounds and scar tissues. Vitamin E will raise the oxygen content within the blood and thus keeps your skin young. Vitamin K is essential for the clotting of the blood.

Vitamins can be purchased in the natural for and synthetic form. The organic substances perfectly located at the plants, animals and other living beings are termed as natural vitamin. We get plenty of vitamins in the food items like corn breads, wheat, nuts, cereal, oatmeal etc. Fruits and green vegetables are the other sources of vitamins. Different vitamins are contained in different food items. One item won't provide all the essential vitamins supplements. And we all must take care to consume number of vitamin rich food. Vitamin cannot produce energy however they can help in different energy producing processes.

Vitamin A - should be used for healthy skin and tissue and helps in the excretion of mucus, it can also help to prevent infection which is needed to maintain a healthy immune system. It could be found in liver, cheese, green vegetables and carrots.

Vitamin C - it will help heal wounds and infections and protects the immune system it may be found in fresh fruit and vegetables.

Vitamin D - is crucial for the maintenance of healthy bones and teeth as well as helps to regulate calcium in your body, it can be found in eggs, milk, breakfast cereals and margarine.

Vitamin E - really helps to protect our cell membranes and the nervous and natural defenses it can be found in vegetable oils, whole grains, nuts and green vegetables.

Vitamin K - this helps to maintain our energy so helping with blood clotting and may be found in liver, meat, potato and cereals.

Vitamin B1 - helps regulate our energy metabolic process and can be found in bread, potatoes, meat and wholegrain cereals.

Vitamin B2 - this utilises energy from fats and protein and can be found in meat, milk and eggs.

Vitamin B6 - this is necessary for protein metabolism and can be found in potatoes, meat, vegetables, milk and fish.

Vitamin B12 - this can be essential for our red blood cells and our nervous system and can be located in liver, milk, fish and eggs.

Folate - this helps with creation of red blood cells and our nervous system and can be found in raw vegetables.

Life Destroyed by Neuropathy

Monday's Tale

Okay, if you also wonder about this one...how can so much tragedy drop on one person's head...and then think...'only in America' and finally feel so uncomfortable that you come to the conclusion that...'it just can't be true'...visit the webpage and read the comments on this post from other people with similar stories (see link below the post). I'm just grateful I live in a country where I don't have to worry about the cost of my health, or having a roof over my head!

Life Destroyed by Neuropathy
Ed's story

In February of 2004 I was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), as well as severe Type II Diabetes. To cope with the extreme chronic pain I was put on powerful narcotics but as time went on my body became acclimated to the drugs and I had to take higher doses or ever more powerful narcotics. Ultimately I was taking large doses of morphine 3 times a day. In a drug induced fog, unable to think clearly, I helplessly watched as the business I worked so hard to build began to crumble around me. Within 3 years everything was gone and my medical bills were enormous. By August of 2007 I was destitute and had no income, assets, investments or savings left. With mounting unpaid bills, I received an eviction notice in December of 2007. That was when I fell down the front steps of my house, injuring my back, and became immobilized for several months. My weight plunged by 40 pounds in only 2 months. I was emaciated and so frail that I couldn’t even walk.

In February of 2008, two weeks before I was to be evicted from my home, my closest friends and my sister gathered at my house. They packed what little of my belongings they could and moved me to Charleston SC to live with my sister. She immediately arranged an appointment with a new doctor in Charleston. He took me off the narcotics since so many of the sensory nerves in my legs (the initial source of my pain) had already been destroyed that I could take a new drug called Lyrica to help control the remaining pain. In order to be effective though, I have to take 3 times the recommended dosage. Because of this I suffer from many enhanced side effects of the drug, in addition to the disease. Besides the chronic pain, I am bedeviled with memory loss, an inability to concentrate, dizziness, balance problems, chronic somnolence, chronic fatigue, chronic weakness and insomnia.

The loss of sensation in my feet allowed a small blister on my foot to go undetected. It became infected, causing massive blood poisoning in my leg. I was put in the hospital for 3 days in October 2008 where I received constant IVs of antibiotics. The wound itself failed to heal and I struggled with it for over a year. I now have almost no feeling below the waist, except for the constant pain. The loss of sensation has caused additional problems with bladder control, bowel movements and impotence.

Since late October 2009 I have had three major attacks from the CIDP that portend serious complications in the immediate future. The first attack landed me in the ER for fear of having a heart attack, the second occurred in late November in the middle of a doctor’s appointment where it was also feared I might be having a heart attack and the third attack occurred just a few days ago here at home. Each event has been more severe than the previous and the effects have been longer lasting, covering increasingly more areas of my body. The disease has now spread to my arms, hands, shoulders, neck, chest and middle back, causing me once again to need narcotics to control the pain. The disease has also begun to affect my motor nerves, causing severe muscle weakness and lack of fine motor control, most evident on the left side of my body and in particular in my left hand where the muscles are atrophying and I no longer have the strength or ability to grip a fork or knife in it. As such, I have to have someone cut up my steaks or other meats for me.

In June of 2009, my sister faced eviction possible herself and I had no place to go. Fortunately a friend offered me a spare room in his home. He and his wife have been supporting me entirely since then, paying for my food, other medications etc. He is disabled himself and his wife doesn’t earn very much in her job. The additional cost of food, the increased electricity cost, the cost of my medications, and the cost of the supplies to monitor my diabetes and give myself injections are a huge drain on their own finances.

I cannot afford the medications required to treat my illnesses. It is only because of the generosity of my friends, the low prescription prices at Wal-Mart, and the benevolence of Pfizer and its Connection to Care program that I am able to obtain them. My doctor also provides me with free samples of the insulin I need to treat my diabetes. Without the help from my doctor and Pfizer, those two drugs alone would cost over $900 a month.

I applied for Social Security disability benefits through the law offices of Binder & Binder in March of 2008. Both my initial application and appeal were rejected by the SSA and my lawyers requested a hearing before an Administrative Law Judge. I was told that the judge reviewed my case and “informally” remanded the case back to the SSA for reconsideration. The SSA again rejected the application, sending it back to the judge. I finally had the hearing about 2 weeks ago but the judge has not rendered a decision and instead has ordered a Consulting Examination before he does so. I do not have a date yet for that exam.

The SSA claimed that I was not disabled at any time in 2008. How they came to this conclusion, given I was flat on my back for the first several months of 2008, is beyond me. If anything, it was probably due to the fact that my first doctor in Charleston was a very young intern who lacked the depth and breadth of experience to understand and properly treat my condition. After seeing this intern for a year, I switched to a much older and more experienced doctor that specializes in conditions like mine. This doctor was excellent and could fully appreciate my condition. Since moving in June of 2009, I had to begin seeing another new doctor. He was recommended by the second doctor and appears to be equally qualified to properly assess my condition.

I appear fine on the outside, with little visible impairment other than needing a cane for balance and the inability to walk very far. On the inside my body is ravaged by the disease and racked with pain. Being burdened with over overwhelming debt, unable even to afford to file for bankruptcy, barraged by calls and letters from collection agencies and lawyers, and the loss of everyone and everything I knew prior to moving to Charleston, has devastated me mentally and emotionally. I have suffered from acute major depression since the earliest days of my illness. The depression has left me in an inescapable sea of darkness in which I confine myself to my one small room, wishing the world would just leave me alone.

I am terrified that the judge might reject my application for benefits. There is no help out there for someone like me, a single, white, 51 year old man. There is nowhere else to turn. I am destitute, seriously ill and alone. What will happen to me? Will I end up out on the street, one of the homeless, only to die from the very illness that the SSA said was not disabling enough? As much as I fear rejection of my application, I cannot continue to rely on the kindness of my friends to support me.

Regardless of the outcome, a conclusive decision on my case must be made. I am just incredibly fearful of that decision and think I would rather cease all medical care, thus encouraging the end that is to come, than to have to live without disability benefits.

http://www.facebook.com/topic.php?uid=240536870951&topic=13855

HEALTHY LIFE STYLE MAY BUFFER AGAINST STRESS RELATED CELL AGING

A new study from UC San Francisco is the first to show that while the impact of life's stressors accumulate overtime and accelerate cellular aging, these negative effects may be reduced by maintaining a healthy diet, exercising and sleeping well.

The study participants who exercised, slept well and ate well had less telomere shortening than the ones who didn't maintain healthy lifestyles, even when they had similar levels of stress," said lead author Eli Puterman, PhD, assistant professor in the department of psychiatry at UCSF. "It's very important that we promote healthy living, especially under circumstances of typical experiences of life stressors like death, caregiving and job loss."

The paper will be published in Molecular Psychiatry, a peer-reviewed science journal by Nature Publishing Group.

Telomeres are the protective caps at the ends of chromosomes that affect how quickly cells age. They are combinations of DNA and proteins that protect the ends of chromosomes and help them remain stable. As they become shorter, and as their structural integrity weakens, the cells age and die quicker. Telomeres also get shorter with age.

In the study, researchers examined three healthy behaviors -physical activity, dietary intake and sleep quality -- over the course of one year in 239 post-menopausal, non-smoking women. The women provided blood samples at the beginning and end of the year for telomere measurement and reported on stressful events that occurred during those 12 months. In women who engaged in lower levels of healthy behaviors, there was a significantly greater decline in telomere length in their immune cells for every major life stressor that occurred during the year. Yet women who maintained active lifestyles, healthy diets, and good quality sleep appeared protected when exposed to stress -- accumulated life stressors did not appear to lead to greater shortening.

"This is the first study that supports the idea, at least observationally, that stressful events can accelerate immune cell aging in adults, even in the short period of one year. Exciting, though, is that these results further suggest that keeping active, and eating and sleeping well during periods of high stress are particularly important to attenuate the accelerated aging of our immune cells," said Puterman.

In recent years, shorter telomeres have become associated with a broad range of aging-related diseases, including stroke, vascular dementia, cardiovascular disease, obesity, osteoporosis diabetes, and many forms of cancer.

Research on telomeres, and the enzyme that makes them, telomerase, was pioneered by three Americans, including UCSF molecular biologist and co-author Elizabeth Blackburn, PhD. Blackburn co-discovered the telomerase enzyme in 1985. The scientists received the Nobel Prize in Physiology or Medicine in 2009 for their work.

"These new results are exciting yet observational at this point. They do provide the impetus to move forward with interventions to modify lifestyle in those experiencing a lot of stress, to test whether telomere attrition can truly be slowed," said Blackburn.

Co-authors include senior author Elissa Epel, PhD, department of psychiatry, Jue Lin, PhD, department of biochemistry and biophysics, both of UCSF and Jeffrey Krauss, MD, division of physical medicine and rehabilitation at Stanford University. Lin, Epel and Blackburn are the co-founders of Telome Health Inc., a diagnostic company measuring telomere biology.

The study was supported by the Baumann Foundation and the Barney & Barbro Foundation. Puterman is supported by the National Heart, Lung and Blood Institute of the National Institutes of Health.

REPRODUCTION LATER IN LIFE IS A MARKER FOR LONGEVITY IN WOMEN

Women who are able to naturally have children later in life tend to live longer and the genetic variants that allow them to do so might also facilitate exceptionally long life spans.

 Boston University School of Medicine (BUSM) study published in Menopause: The Journal of the North American Menopause Society, says women who are able to have children after the age of 33 have a greater chance of living longer than women who had their last child before the age of 30.

"Of course this does not mean women should wait to have children at older ages in order to improve their own chances of living longer," explained corresponding author Thomas Perls, MD, MPH. "The age at last childbirth can be a rate of aging indicator. The natural ability to have a child at an older age likely indicates that a woman's reproductive system is aging slowly, and therefore so is the rest of her body."

The study was based on analysis of data from the Long Life Family Study (LLFS) -- a biopsychosocial and genetic study of 551 families with many members living to exceptionally old ages. Boston Medical Center, the teaching hospital affiliate of BUSM, is one of four study centers that make up the LLFS. The study investigators determined the ages at which 462 women had their last child and how old those women lived to be. The research found that women who had their last child after the age of 33 years had twice the odds of living to 95 years or older compared with women who had their last child by age 29.

The findings also indicate that women may be the driving force behind the evolution of genetic variants that slow aging and decrease risk for age-related genes, which help people live to extreme old age.

"If a woman has those variants, she is able to reproduce and bear children for a longer period of time, increasing her chances of passing down those genes to the next generation," said Perls, the director of the New England Centenarian Study (NECS), a principal investigator of the LLFS and a professor of medicine at BUSM. "This possibility may be a clue as to why 85 percent of women live to 100 or more years while only 15 percent of men do."

The results of this study are consistent with other findings on the relationship between maternal age at birth of last child and exceptional longevity. Previously, the NECS found that women who gave birth to a child after the age of 40 were four times more likely to live to 100 than women who had their last child at a younger age.

The results of Perls' study show the importance of future research on the genetic influences of reproductive fitness because they may also impact a person's rate of aging and susceptibility to age-related diseases, according to the researchers.

The study, "Extended maternal age at birth of last child and women's longevity in the Long Life Family Study," will be published in the January 2015 print edition of Menopause.

Life With Idiopathic Neuropathy

 Sometimes a personal account has far more impact than a scientific article with no personal appeal and that's the case with today's post from livingwithperipheralneuropathy.blogspot.com (see link below). There's no suggestion that the author has any connection with HIV but her account will certainly strike a chord with many people with neuropathic problems. Just knowing that someone else is going through the same as you can be a great comfort.

 

Living with Peripheral Neuropathy
Sunday, January 8, 2012 by Betsy

I've looked online quite a bit, and find that although there are tons and tons of pages out there that give drug review info, there really isn't anything that gives real life, valid info on Peripheral Neuropathy. There's no place for people to go to discuss how it feels to have to live in chronic pain with this debilitating condition. So I decided to start this blog in the hopes that others might find their way here and share their stories to help those who are newly diagnosed. It's a scary thing to face when it's brand new to you.

My name is Betsy. I was officially diagnosed in May of 2011 with "idiopathic" peripheral neuropathy. That means there is no known cause. The only possible cause in my case, but not confirmed, is that I took too many mega B vitamins over a period of 15 years or so, leading to a toxic level of vitamin B6 in my bloodstream. Apparently, that can cause neuropathy. So much for trying to take care of myself!

I started having symptoms LONG before I saw a doctor about it; it was only in hindsight that I was able to recognize them as early onset symptoms. I finally saw a doctor when the burning pain in my hands and feet became too much to bear. I thought it was arthritis. The doctor said, "It's neuropathy," and sent me to a neurologist where I was ultimately diagnosed.

My symptoms when I sought treatment were severe: My hands and feet would swell up and I was losing strength in my hands, unable to do normal tasks without great difficulty. For example, I have long hair, and holding a hairbrush hurt a great deal. I was having trouble cutting my meat up on my dinner plate. It hurt to use utensils. I could no longer peel a potato without great pain.

My feet burned with fire from within - BURNING PAIN. That was/is the only way to describe how it feels for me. I know for others, neuropathy brings a lack of sensation, a numbness or tingling. I almost wish it was that way for me. It got to the point where I wanted to literally chop my feet off at the ankles, because it seemed like that would be the ONLY way to make the burning pain STOP. Obviously, that is not even logical.

At night, the pain would either keep me awake, or wake me from a sound sleep. My hands would be swollen claws. I had to lie in a way that my feet wouldn't touch ANYTHING, not a sheet, not the mattress, not each other - they could touch nothing but air. I was eating ibuprofen like it was going out of style - and while it helped the swelling, it did nothing for the pain. I had to find a way to get this treated. It was affecting my job, my sleep, my life.

I had to wait 3 months before I could get in to see the neurologist. In the meantime, I researched my butt off, learning all that I could about "neuropathy." I self-diagnosed it as "peripheral neuropathy," and learned enough about it to scare the crap out of me. (I am one of those that tends to plan for the worst but hope for the best. The worst case scenarios for this condition are terrifying, but they are potential reality.)

My hands are starting to hurt too much to continue typing, so I'm going to stop here for now. I will pick up again later. Eventually I plan to publish helpful links for people that are learning to live with this as I am. I welcome any and all comments from people that have been/are now living with Peripheral Neuropathy, regardless of the cause. Please feel free to add links that you think might be helpful to others that are dealing with this chronic pain.
 
http://livingwithperipheralneuropathy.blogspot.nl/2012/01/living-with-peripheral-neuropathy.html

EAT PEANUTS FOR A LONGER LIFE

If you're looking for a simple way to lower your risk of dying from a heart attack, consider going nuts.

Researchers at Vanderbilt University and the Shanghai Cancer Institute examined the association of peanut and nut consumption with mortality among low-income and racially diverse populations and found that intake of peanuts was associated with fewer deaths, especially from heart disease.

The study was published March 2 in JAMA Internal Medicine. The first author of the paper is Hung Luu, Ph.D., a post-doctoral fellow in the Division of Epidemiology, Vanderbilt University Medical Center. Senior author is Xiao-Ou Shu, M.D., Ph.D., associate director for Global Health at the Vanderbilt-Ingram Cancer Center (VICC) and professor of Medicine in the Department of Epidemiology.

"Nuts are rich in nutrients, such as unsaturated fatty acids, fiber, vitamins, phenolic antioxidants, arginine and other phytochemicals. All of them are known to be beneficial to cardiovascular health, probably through their anti-oxidative, anti-inflammatory and endothelial function maintenance properties," Shu said.

While research has previously linked nut consumption with lower mortality, those studies focused mainly on higher-income, white populations. This study was the first to discover that all races -- blacks, whites and Asians alike -- could potentially increase heart health by eating nuts and peanuts.

"In our study, we found that peanut consumption was associated with reduced total mortality and cardiovascular disease mortality in a predominantly low-income black and white population in the U.S., and among Chinese men and women living in Shanghai," Shu said.

This study was based on three large ongoing cohort studies. Participants included more than 70,000 Americans of African and European descent from the Southern Community Cohort Study (SCCS), who were mostly low-income, and more than 130,000 Chinese from the Shanghai Women's Health Study (SWHS) and the Shanghai Men's Health Study (SMHS).

Information on nut consumption was collected by structured questionnaires at the baseline survey. For participants in the SCCS, deaths were determined by linking with the National Death Index and Social Security Administration mortality files, and for participants in the SWHS/SMHS, by linking with the Shanghai Vital Statistics Registry and by conducting home visits. In total, more than 14,000 deaths were identified, with a median follow-up of 5.4 years in the SCCS, 6.5 years in the SMHS, and 12.2 years in the SWHS.

Peanut consumption was associated with decreased total mortality, particularly cardiovascular mortality (i.e., 17-21 percent reduction in total mortality, and 23-38 percent reduction in cardiovascular mortality for the highest quartile intake group compared to the lowest quartile group) across all three racial/ethnic groups, among both men and women, and among individuals from low-SES groups.

Because peanuts are much less expensive than tree nuts, as well as more widely available to people of all races and all socioeconomic backgrounds, increasing peanut consumption may provide a potentially cost-efficient approach to improving cardiovascular health, Shu said.

"The data arise from observational epidemiologic studies, and not randomized clinical trials, and thus we cannot be sure that peanuts per se were responsible for the reduced mortality observed," said William Blot, Ph.D., associate director for Cancer Prevention, Control and Population-based Research at VICC and a co-author of the study.

He did note that "the findings from this new study, however, reinforce earlier research suggesting health benefits from eating nuts, and thus are quite encouraging."

The American Heart Association recommends eating four servings of unsalted, unoiled nuts a week. However, nutrient-rich nuts are also high in calories, so don't eat too many if you're watching your weight. A serving size is a small handful or 1.5 ounces of whole nuts or 2 tablespoons of nut butter.