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I am a dental hygienist and have worked for 37 years and am suffering with a mid-brain meningioma. I have taken thousand...
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Hi,Am Mis Kachi! !(kachi_umar@live.com) please how are you! hope you are fine and in perfect condition of health.I went...
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This blog features posts from multiple departments of the National Brain Tumor Society. From keeping you updated on the research advancements, to providing insight into our public policy advocacy efforts, we want to keep you informed of how NBTS as an organization is here for you. Questions or comments? Email questions@braintumor.org.
Category: Ask the Health Professional Category
Tamar at NBTS
Posted by Tamar at NBTS
Tuesday, October 04, 2011
Comments (0)

Question:  I live faraway from my loved one, but want to help.  What can I do?

Answer: Living away from a loved one who has been diagnosed with a brain tumor can bring on many feelings:  fear, guilt, loss, and a sense of feeling that you are not helpful. Many people falsely believe that because someone is far away, there isn’t much you can do. The truth is, there is still a lot that friends and family can do to help their loved one from afar. 

We know that there are many of you who are not able to be close by, and a few years back we held a teleconference specifically for long distance caregivers that talks about what you can do to help.  The teleconference discusses family roles, getting organized, figuring out each person’s strength, and what they are good at and assigning those tasks accordingly.  It also talks about different methods of communication that you can practice with your loved ones while you are away. 

You can listen to the teleconference or download the PDF version of the slide presentation here.

Are you a long distance caregiver?  What has worked for you?

Tamar Sekayan, MSW
Assistant Director, Patient Services

Image: Long Distance Relationships

Comments (0)
Natalie Ledesma, MS, RD, is a Nutritionist at University of California, San Francisco  Comprehensive Cancer Center. She speaks regularly about cancer nutrition guidelines and they make sense. Her main principle is that a diet needs to be balanced with a variety of foods.

Here’s the breakdown:
  • Focus on plant based foods; fruits and vegetables, whole grains and beans. Eat at least five servings a day. Choose fruits and vegetables of intense color because they contain the most nutrients.
  • Choose lean protein sources (like fish and chicken).
  • While fat is essential to diets, less fat is better. Limit animal fats and stick to olive oil, canola oil or omega-3 fatty acids. Omega 3 fatty acids are found in cold water fish (salmon, trout, herring, sardines), flaxseeds, walnuts, and pumpkin seeds.
  • Moderation on processed food, refined grains, flours, and sugars.
  • Limited alcohol consumption is a good idea. Alcohol consumption may cause appetite loss for the needed vitamins and minerals. 
  • Drink plenty of fluids. Water or non-caffeinated beverages will help meet fluid needs.
  • Be physically active to help maintain a healthy weight and to help process food.
This diet does not cure cancer, but what I have learned from brain tumor survivors is that if they eat a good diet, exercise on a regular basis, and limit alcohol intake, they are able to tolerate the treatment better and may just feel better overall. These guidelines help to promote a good quality of life.

Mary Lovely, RN, PhD
Medical Information Specialist / Assistant Director of Research

Reposted from 5/19/2010
Comments (5)

Question:
What are headaches like when associated with a brain tumor?

Answer:
A headache is a symptom commonly associated with the diagnosis of a brain tumor.

Type:
All types of headaches can precede a brain tumor. The types and qualities of headaches experienced by patients depend on the cause and location of the tumor. In a study by Forsyth and Posner headaches were present at diagnosis in 53% of patients. The most common type of headache described was the tension headache (77% of patients). The “classic” brain tumor headache (that is, one described as severe, worse in the morning, and associated with nausea or vomiting) occurred in only 17% of patients.

Five percent of patients had migraine headaches. Some case studies have also reported migraine headaches as the main symptom of a brain tumor.

Location:
Tumor location also influences headache type. Patients with tumors deep in the brain commonly have bilateral nonlocalizing headaches. Patients with pituitary tumors describe headaches as overall, generalized in the anterior half of the head, pulsating, and continuous.
The brain tumor headache is caused by local traction on pain-sensitive intracranial structures. These structures include the large veins, cranial nerves, and portions of the dura. The supratentorial pain-sensitive structures are innervated by the trigeminal nerve. The infratentorial structures are innervated by the 9th, 10th, and upper cervical nerves.

Management:
Steroids help relieve headaches by decreasing the pressure caused by edema from the brain tumor, and are usually continued until the edema subsides or surgery occurs.

Headaches are rarely persistent in brain tumor patients, or they may be a low pain level such as 2 on a scale of 10. If headaches continue, a careful evaluation for a pain management protocol needs to be in place to maintain a good quality of life. Some patients will experience headaches near the end of life. In this case, end-of-life pain management principles are applied.

Mary Lovely, PhD, RN
Medical Information Specialist/Associate Director of Research

Image: momslifestyle.com
Reposted from 12/16/2010

Mary at NBTS
Posted by Mary at NBTS
Tuesday, September 13, 2011
Comments (0)

Question:
I have read about laughter and how it makes people with chronic illnesses or cancer feel better. How does it make a difference?

Answer:
Laughter is one of the greatest ways to cope with having a brain tumor or living with a disability. Also known as humor therapy, this coping strategy uses humor for the relief of physical or emotional pain or stress. For centuries, laughter has been used as a complement to medicine; research in modern days continues to support the use of laughter as a way to promote well-being.

Whether you’re exchanging jokes or finding humor in an everyday situation, many benefits come from humor and laughing. Laughter exercises and strengthens your facial muscles. It peps up your body by increasing oxygen use and heart rate. Further, studies have shown that humor can improve pain tolerance and that stress-related hormones decrease during laughter. What’s more, humor is inexpensive (even free!) and almost always present in the world around us. Sometimes we just have to be open to seeing the world with a different perspective.

Many people find laughter and humor through comical performances, cartoons, movies, books, games, and more. Talking with an old friend may produce laughter, as can spending time with a beloved pet. Support groups are a venue that may seem serious, but they are also a safe environment where everyone can start laughing about the simplest thing.
Some long-term survivors have pointed out that laughing has been the best way to manage when fatigue becomes overwhelming, or they can’t remember something. Being stressed gets them nowhere. It’s better to laugh and accept it. This ability to find humor in everyday challenges is a common theme I have seen in working with families over the years.

Humor is not considered a treatment for brain tumors, but it does provide a sense of well-being. It should be considered an essential part of a care plan. As a long-term survivor recently said, “Laughter is like exercise from the inside out.”

Go ahead and give it a try. Only good comes from a strong laugh.

Mary Lovely, PhD, RN
Medical Information Specialist/Associate Director of Research

Reposted from 2/11/11

Comments (1)

Question:
My wife had brain tumor surgery last fall. Since then, she has completed radiation therapy. The radiation treatments were completed over a month ago and she doesn’t show signs of any hair growth in the area where she was radiated. Does radiation therapy cause permanent hair loss or have we not waited long enough? Is there anything we can do?

Answer:
Hair styles and volume are very important to a person’s image since the look of hair is part of the first impression. Hair loss is commonly experienced within the radiated areas of the head, and the hair loss may be permanent. If the hair bulb (the part of the hair that contains a pool of cells that becomes the hair root and follicle) is totally damaged by the radiation the person may experience permanent hair loss. This permanent hair loss occurs more commonly with larger doses of radiation. On the other hand, the hair may develop slower or have unusual patterns of regrowth. The normal hair growth cycle may have been interrupted, and regrowth may occur in approximately three to five months. Some changes that may result range from color to texture alterations.

Since radiation was so recent, wait a few months and see what happens. Options are to have a haircut that covers the radiated area, or to wear hats and fun scarves. Hair transplant surgery may be considered. A surgeon can remove donor hair from the sides and back of her head (safe zones) and transplant it into tiny incisions in the bald area. Be sure to see an experienced hair transplant physician.

Unfortunately, hair loss may happen, but it does not have to hamper your life.

Mary Lovely, PhD, RN
Medical Information Specialist/Associate Director of Research

Recap from article posted on 2/8/11
Image: 4women.com

Mary at NBTS
Posted by Mary at NBTS
Tuesday, August 30, 2011
Comments (0)

Q. After my tumor was removed I continued to have seizures, and they  really interfere with my daily functioning. What can I do besides taking more medication?

A: Seizures can be quite incapacitating. If the seizures continue, one of the options is surgery to remove the part of the brain that is causing the seizures. Commonly, an epilepsy specialist would provide a comprehensive evaluation including an electroencephalogram (EEG).

An EEG is a test that can help diagnose the abnormal discharges related to epilepsy. During an EEG, the electrical signals of the brain are recorded. This electrical activity is detected by electrodes, or sensors, placed on the patient's scalp and transmitted to a polygraph that records the activity.

Electrical signals produced by the brain neurons are picked up by the electrodes and transmitted to a polygraph, where they produce separate graphs on moving paper using an ink writing pen or on a computer screen. Here is a picture of person is receiving EEG testing:

Sometimes, a grid of electrodes is placed directly on the brain. Subdural grid arrays are used when seizure activity cannot be located by ictal scalp recordings and when functional cortical mapping is required before surgery. This method is commonly used before seizure surgery.

Even if a surgery has been performed for tumor removal, another surgery may be recommended to remove the seizure focus. For some people, the surgery has decreased the seizures to the point where life is much easier. Several large brain tumor centers have the expertise of brain tumor and seizure surgery.

Mary Lovely, RN, PhD
Medical Information Specialst / Assistant Director of Research

Images: people.brandeis.edu; blog.craftzine.com
Source: WebMD

Tamar at NBTS
Posted by Tamar at NBTS
Tuesday, August 16, 2011
Comments (0)

Been a little busy lately? So have I! That’s why I always enjoy re-cap weeks on the Headquarters blog.  It allows me to go back through and highlight some of the helpful blog posts you and I may have missed.  Here are a few that may pique your interest:

Being Candid = Awesome:  A “Young Adult” post
I’ve interacted with many Young Adult (AYA’s) brain tumor survivors. I’ve followed their blogs; I’ve given them guidance and support where I can, and laughed and cried right along with them. We know that the brain tumor experience has similarities, but the one thing that strikes me as different about working with “Young Adults” (those 40 and under) is their incredible knack for candor. Read more

Q & A: What are some symptoms of depression?
A: Depression is a condition that may affect a person with a brain tumor or a caregiver. Some symptoms of depression are: Read more

Q & A:  A Dental Oncologist answers questions about oral healthcare for brain tumor patients.
This week we're talking about the effects that brain tumor treatments, such as radiation and chemotherapy, may have on one's oral health. We interviewed Dr. Cherry Estilo, an expert in dental oncology - a discipline devoted to the dental and oral care of cancer patients. Read more

It feels good to catch up, doesn’t it? Happy reading!

Tamar Sekayan, MSW
Assistant Director, Patient Services

Image: thebrooklynnomad.com 

Mary at NBTS
Posted by Mary at NBTS
Tuesday, August 09, 2011
Comments (1)

Q: What is a shunt, and what are symptoms of needing a shunt? What brain tumor types may require a shunt?

A: A shunt is a tube that diverts the excel fluid from the expanded brain cavity (ventricle) to another part of the body. This procedure redirects the fluid to another body cavity such as the abdomen, in most cases. A shunt has three parts: a silicone catheter that enters the enlarged ventricle, a one way valve that allows flow away from the ventricle, and tubing which enters the cavity that receives the fluid. Each valve is designed to operate at a set pressure. A variety of valves are available.



Common symptoms of hydrocephalus in older children and adults that give an indication of needing a shunt may be personality changes, headache, vomiting, lethargy, irritability, and loss of interest in daily activities. Gait disturbance and disrupted coordination may also occur.

Brain tumors that require a shunt are located in areas that obstruct cerebrospinal fluid. Children more commonly than adults have tumors in these areas. Some of them are astrocytomas, medulloblastomas, ependymomas, and subependymomas, located by the brainstem or cerebellum. People with shunts are evaluated periodically to make sure the shunt is working well. If symptoms arise, then a shunt revision or a valve with a different pressure may be needed. The neurosurgeon places shunts and commonly looks after it’s care, making adjustments as needed.

Mary Lovely, RN, PhD
Medical Information Specialist / Associate Director of Research

Sources: hydrocephalus.org
Image: nphsurgery.org

Comments (0)


Q: What are some of the signs of depression?

A: Depression is a condition that may affect a person with a brain tumor or a caregiver.

Some symptoms of depression are:

• Sadness or excessive crying
• Loss of interest or pleasure in activities that used to be enjoyable
• Changes in appetite (more or less) or weight (gaining or losing)
• Feeling tired
• Difficulty sleeping—too little or too much
• Agitation or doing things more slowly
• Negative thoughts, including thinking about death
• Feeling worthless or guilty
• Poor concentration or having difficulty making decisions
Source: www.seroquelxr.com

Not every person with a brain tumor suffers from depression. Those who have had a previous history of depression are more prone to find the same problem after the tumor diagnosis. Also, people who are younger and have low grade tumors have more depression. It may be difficult to sort out if a person is actually depressed or if a person has a brain injury disturbance that appears as lack of motivation. A family member will tell the health care professional that the person is being lethargic and has lack of motivation. The problem may be that the motivational issue may be due to brain injury to a specific area that has been affected. Being able to make the proper diagnostic determination may take the expertise of a neuropsychologist. This specialist will give specific tests to identify the source of the behavior.

Dr. Caroline Racine, a UCSF neuropsychologist, spoke about depression and stated that not everyone needs a pill. Counseling may help. Getting up and out of the house sometimes relieves depression.

Exercise, even gardening, or light walking, can make a difference on one’s spirits. Listening to music and socializing may make a significant change. Yet, if depression is pervasive, then anti-depressant medication may allow the person to live more normally.

Depression may be a problem with patients, but also with caregivers. Role changes, financial matters, and even physical conditions such as high blood pressure may occur that may spurn on depression. Counseling and medication may be appropriate.

Depression may arise and is often treatable. If there is any indication of depression, talk with your health care professionals and find some treatment. The goal is to live an optimal life.

Mary Lovely, RN, PhD
Associate Director of Research / Medical Information Specialist

Image: weheartit.com

Comments (0)

Q: How can I tell if I have a pituitary tumor?

A: Pituitary tumors can have quite visible signs, or rather subtle signs. Depending on the hormone affected, the symptoms can be quite distinctive. For instance, a woman with a prolactinoma may have symptoms such as loss of menstruation or leaking breasts. A man with a growth hormone-secreting tumor may have growth or enlargement of the hands, feet, face, or tongue. He may have coarsening of the facial features or enlarged shoe size. In other cases, if the tumor has become quite large, the distinctive signs may not be there, and the individual may have vision changes (loss of peripheral vision) due to the tumor pushing on the optic nerve.

Many people diagnosed with pituitary tumors describe subtle symptoms that are hard to relate to any specific problems. A feeling of depression may happen, and they know that they are not naturally depressed individuals. This depression may last for years without a cause. Headache, cold intolerance, and excessive perspiration may occur. A decreased libido in men or women may occur. If men begin to feel a lack of desire or interest in sex, then they should seek medical help and ask to have a testosterone blood test. It may be the best indicator that a pituitary abnormality exists.

Getting the diagnosis is really important. If you feel that something just doesn’t feel right, bring it up to your doctor or health care professional. Treatment with medication or surgery is available, and best taken care of at a large neurosurgery center. A great resource for all symptoms of pituitary tumors can be found through the Neuroendocrine Clinical Center and Pituitary Tumor Center (Mass General Hospital).

 

Mary Lovely, RN, PhD
Associate Director of Research / Medical Information Specialist 

Comments (0)
This week we're talking about the effects that brain tumor treatments, such as radiation and chemotherapy, may have on one's oral health. We interviewed Dr. Cherry Estilo, an expert in dental oncology - a discipline devoted to the dental and oral care of cancer patients.

Dr. Estilo received her Doctor of Dental Medicine (DMD) at the University of Pennsylvania School of Dental Medicine, and is a dentist at Memorial Sloan-Kettering Cancer Center. She has a special interest and expertise in the dental and oral evaluation and treatment of children with cancer as well as patients with head and neck cancer.


How may chemotherapy and radiation affect oral health? What are the most common side effects that brain cancer survivors may experience?

Dr. Estilo: There are no oral side effects that are specific to brain cancer treatment. However, oral side effects are common in patients receiving chemotherapy and radiation therapy to the head and neck. In addition, effects of chemotherapy and radiation therapy are different in that chemotherapy has a systemic effect which means that it can affect any cell in the body whereas radiation therapy only affects the cells in its path. For example, a patient who receives radiation therapy to the leg or chest will not be expected to have any effects in the mouth associated with that treatment.

The mouth is at risk of side effects from chemotherapy and head and neck radiation therapy. The oral effects of these treatments may be a direct cause of the treatment or may result indirectly from the side effects of treatment. Radiation therapy can directly affect the salivary glands that can result in dry mouth. It can also directly damage the oral tissue by causing scarring.

Slow healing and infection are indirect complications of cancer treatments. Chemotherapy may reduce the number of white blood cells and weaken the patient’s immune system, thus making it easier for the patient to develop an infection.

Oral side effects can be acute or chronic. Acute problems are those that occur during treatment. These may include mouth sores. Chronic problems are those that continue or develop months or even years after treatment ends. Chronic oral problems include dry mouth, infections, and changes in taste. Long-term or lingering dry mouth is a particularly difficult condition in which patients are at increased risk for tooth decay and mouth infections.

Why is the mouth at risk for oral health side effects?

Dr. Estilo: The mouth contains hundreds of different bacteria. Chemotherapy and radiation therapy can alter saliva production and disrupt the lining of the mouth and tip the healthy balance of bacteria. These changes can lead to infections, mouth sores, and increased riskfor tooth decay.

The other reason is related to how chemotherapy and radiation therapy work. Chemotherapy and radiation therapy stop the growth of rapidly dividing cells such as cancer cells. Unfortunately, these treatments do not differentiate between normal cells and cancer cells. Normal rapidly dividing cells are affected as well. Examples of rapidly dividing cells are hair follicles, cells that line the inside of the mouth, and cells that line the inside of the intestines; these are affected. This is why chemotherapy treatment can cause side effects of hair loss, mouth ulcers, and intestinal upset.

Are children that have received chemotherapy and radiation to the head or neck at greater risk for oral health problems in the future? How does age at the time of treatment affect risk for developing oral health complications?

Dr. Estilo: Thanks to advances in treatments, there have been great improvements in the survival rates of many childhood cancers. More and more pediatric cancer patients are surviving their disease. Children treated with chemotherapy and head and neck therapy at a young age of less than 6 years of age are at high risk for dental problems. Examples of dental problems include missing adult teeth, weakening of the outer layer of the tooth (enamel), and short roots. The severity of effects is related to the age of the child at time of treatment, the intensity and duration of chemotherapy, and dose of radiation therapy.

What are some preventive measures that brain tumor survivors can take to protect their oral health? For instance, should they see a dentist more frequently than the general population? Is this any different at all compared to those that have not undergone cancer related treatments?

Dr. Estilo: Survivors who have lingering dry mouth, children treated at a young age and those with pre-existing dental conditions such as gum disease, should seek regular dental care more frequently, perhaps three times a year. Otherwise, they can see the dentist twice a year.

As I’ve mentioned, people with dry mouth are at high risk for tooth decay. For patients with dry mouth, I recommend that the use of high-fluoride content prescription toothpaste. Survivors of pediatric brain tumors can have numerous dental problems and many of them will require extensive dental treatment; this special group of patients should be followed quite closely for the rest of their lives.

For brain tumor patients that are undergoing cancer treatments, are there any products or
treatments that are recommended to maintain/preserve oral health?


Dr. Estilo: Patients with poor mouth care and poor dental health at the time of cancer treatment may have more frequent and severe oral side effects. While undergoing treatment, patients should continue and maintain good oral hygiene that includes brushing after every meal and flossing daily. Parents of young children should brush their children’s teeth and avoid a diet rich in sugar.

There is no drug available to prevent or treat mouth sores. Care of mouth sores focuses on cleaning the mouth and relieving the symptoms. Swishing ice chips in the mouth may lessen the painful symptom of mouth sores.

Also, is it important that brain tumor patients and survivors to see a dentist that has experience or specialty in treating patients with a cancer diagnosis?

Dr. Estilo: If the survivor has no major chronic problems, he or she can see a local general dentist. A survivor of childhood brain tumor who develops significant dental developmental problem(s) should be followed by a dental oncologic specialist, or at the very least, this patient’s local general dentist should work closely with a dental oncologic specialist.

What information should brain tumor survivors share about their medical history with their
dental provider? Also, what, if any medical records will they need to bring along?


Dr. Estilo: How old they were when they were treated; types of treatments they received; and also, if available, the name of the chemotherapy and the dose and site of radiation therapy.

As far as accessing dental care, for the under-insured, are there any charities or sliding scale services that provide oral health screenings and dental care to cancer survivors that you know of?

Dr. Estilo: Various U.S. government agencies and private organizations may offer financial assistance for cancer or other healthcare needs.

NBTS Patient Services: Dental care at reduced rates is often available at colleges and universities with dental school clinics and through dental hygiene education programs. Visit the American Dental Association's website view a listing of accredited dental education programs in the United States.

You can also contact your state or local health department for a referral to a public health clinic in your area that offers dental care. Click here to access your state’s contact information.

If you or a brain tumor survivor or family member looking for dental care resources, please contact the NBTS Patient Services team at 800.934.2873 or by email at info@braintumor.org.

Where can brain tumor patients and families go for more information on late effects of treatment on oral health?

Dr. Estilo: A good resource is the National Cancer Institute at www.cancer.gov or at 800.4.CANCER.

Is there anything else that you’d like to share on the topic?

Dr. Estilo: I’d like to emphasize the importance of optimizing oral health before, during, and after cancer treatment. Many of the effects of treatment can be minimized and even avoided with aggressive preventive measures. In most cases adult brain tumor survivors can be seen by their general dentist for routine care, unless they have lingering problems. Survivors of childhood brain tumors, especially those treated at a very young age, should be followed very closely by a dental specialist.
Comments (0)

Hello!

We hope you enjoyed the 4th of July holiday weekend. This week our team will be revisiting some of our recent blog posts. Here's a recap of some of the "Ask the Health Professional" topics over the last month.

Interview with Dr. Sueann Mark, Clinical Sexologist
Answers to common questions about intimacy and sexuality following the diagnosis and treatment of a brain tumor

Home Modifications: How to Prevent Falls
A list of home safety modification tips to aid in fall prevention

Q & A: I live far from my loved one, but want to help. What can I do?
Long-distance caregiving tips and tools

If there are questions or topics that you'd like addressed in our weekly "Ask the Health Professional" posts, please let us know! We're always looking for new subjects that are of interest to you.

Patient Services Team

Comments (2)

Q: My sibling was diagnosed with a brain tumor, how can I help him/her?

Siblings of any age feel angst when a tumor is diagnosed. Sometimes there is a feeling of guilt that one’s brother or sister has the tumor instead of the other person. If hard feelings have developed between siblings in the past, then figuring out how to manage these feelings often arise. It comes down to how to help the sibling.

The National Cancer Institute  has an excellent publication called “When Your Brother or Sister Has Cancer.” While it's geared towards teens, there are several really good tips about helping a sibling for all ages. Here are some of them.

Just be there. If it is long distance or being together, being there can make a difference.

  1. Hang out together. My sister had cancer and she was far away. We talked on the phone every day about everything, just as if she did not have the diagnosis. It helped both of us. When we got together, we relaxed and talked. Life is precious, and these moments will always be remembered.
  2. Comfort one another. Life is hard when some opportunities are not longer attainable because of the tumor effects. Being a little bit different than before is really tough. Someone who treats you the same as before really helps. Crying together and being there for each other makes a difference.

Help out by being thoughtful.

  1. Help your brother and sister stay in touch with friends. Networking is so important. I’ve been following some patients recently on Caringbridge.org. While the person with the brain tumor was recovering from surgery, her sister wrote to keep her friends and extended family informed. If the patient can’t pick up the phone and would like to see someone a sibling can be very helpful to make the connection.
  2. Laugh, laugh, laugh. Watch funny movies together. Most of us have funny memories of growing up. Sharing these moments can be energizing. Interjecting humor is fun. Do crazy things.
  3. Find food to enjoy. Even healthy food can be fun. Making food together that may be different but quite tasty. Most men like to do things together rather than talk. Food may be a good media in which to bond.
  4. Be there, and be “real.” Company is good. Sitting and listening is an amazing gift to give a sibling. Nothing has to be about the diagnosis -- maybe just about life.

Make the most of the time together, because everyone will benefit.

Mary Lovely, RN, PhD
Assistant Director of Research / Medical Information Specialist

Comments (0)

A:  Living away from a loved one who has been diagnosed with a brain tumor can bring on many feelings: fear, guilt, loss, and a sense of feeling that you are not helpful. Many people falsely believe that because someone is far away, there isn’t much you can do. The truth is, there's still a lot that friends and family can do to help their loved one from afar.

We know that there are many of you who are not able to be close by, and a few years back we held a teleconference specifically for long-distance caregivers that talks about what you can do to help.  The teleconference discusses family roles, getting organized, figuring out each person’s strength and what they are good at and assigning those tasks accordingly. It also talks about different methods of communication that you can practice with your loved ones while you are away.

You can listen to the teleconference or download the PDF version of the slide presentation here.

Are you a long-distance caregiver? What has worked for you?

Tamar Sekayan, MSW
Assistant Director, Patient Services

Image: http://crunchyclean.blogspot.com

Comments (2)

Falls can occur anytime, anyplace, and to anyone while doing everyday activities such as climbing stairs or getting out of the bathtub. Brain tumor patients have a high risk of falling because of multiple factors including problems with balance and reduced overall mobility.

Research shows that simple safety modifications at home can substantially cut the risk of falling. Protect yourself or your loved one with these simple changes in furniture arrangement, housekeeping, and lighting:

Bedroom
  • Place a lamp, telephone and flashlight near the bed.
  • Replace satiny sheets and comforter with products made of non-slippery material (e.g., wool, cotton).
  • Arrange clothes in the closet and drawers so that they are easy-to-reach.
  • Install a night-light along the route between the bedroom and the bathroom.
  • Keep clutter off the bedroom floor.
Living Areas
  • Arrange furniture so there is a clear pathway between rooms.
  • Keep low-rise coffee tables, magazine racks, foot rests, and plants out of the path of traffic.
  • Install easy-access light switches at entrances to rooms. Glow-in-the-dark switches or devices such as “the clapper” (clapping your hands automatically turns the light on) may be helpful.
  • Keep electric, appliance, and telephone cords out of walkways, but don't put cords under a rug.
  • Don't sit in a chair or on a sofa that is so low it is difficult to stand up.
  • Repair loose wooden floorboards right away.
Kitchen
  • Remove throw rugs.
  • Clean up immediately any liquids, grease, or food spilled on the floor.
  • Store food, dishes, and cooking equipment within easy reach.
Stairs and Steps
  • Keep stairs clear of packages, boxes, or clutter.
  • Light switches should be at the top and bottom of the stairs.
  • Provide enough light to see each stair and the top and bottom landings.
  • Put non-slip treads on each bare-wood step.
  • Install handrails on both sides of the stairway.
Bathroom
  • Place a slip-resistant rug adjacent to the bathtub for safe exit and entry.
  • Install grab bars on the bathroom walls.
  • Keep a night-light in the bathroom.
  • Use a rubber mat or place nonskid adhesive textured strips on the tub.
Tamar Sekayan, MSW
Assistant Director, Patient Services

Adapted from the American Academy of Orthopaedic Surgeons and the National Brain Tumor Society’s Caregiver Workshop curriculum

Image: Handyman Cartoon

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