(Today's blog comes from David Arons, Director of Public Policy)

As we head into this week's Summit, I was reflecting on how perfect this year's theme and place are for this event. "Transforming Tomorrow, Today" is a clarion call for us to speak up and take our future as a brain tumor community into our own hands and do it today. And what better place is there to start a big fight against brain tumors than in Philadelphia - the city of Rocky and the city where our founding fathers sat down to declare independence from the British and start a new government. The city of brotherly love is a also a natural because the metro area has incredible supporters of the Race for Hope-Philadelphia who are looking to be over 6,000 strong this Sunday November 6.

So just what can we do to transform tomorrow, today?

1. Let's advocate (www.braintumor.org/takeaction). The federal government is the largest funder of brain tumor research in the U.S. - by a lot. As Congress debates the budget we need to let them know that the brain tumor community is watching and we want them to make sure the National Institutes of Health is fully funded so it can advance research.

2. Let's recruit. Invite a friend, a neighbor, a co-worker to join you at a National Brain Tumor Society event like the Race for Hope-Philadelphia. Check out our events page to find one in your area.

3. Let's educate ourselves and the medical community about all that's available to brain tumor patients including what clinical trials are offered.  See http://www.braintumor.org/patients-family-friends/treatment/ for more information about treatment options. By becoming informed health care consumers, we can push the medical and research establishments to improve treatment and find a cure.

I hope to see you in Philadelphia or at a National Brain Tumor Society event in 2012.  Here's to transforming tomorrow, today. 

(Today's blog comes from David Arons, Director of Public Policy)

Will there be a cure?

When will there be a new treatment for brain tumors?

Critical questions, no doubt, and researchers funded by the National Institutes of Health (NIH) and National Brain Tumor Society are searching for answers. To find those answers, research funding is a necessary priority and Congress has a big say in how much money is available for the latest research. You also may have heard that Congress’ new Supercommittee is working on a 10-year plan to reduce the federal budget deficit. This master plan, if enacted, will very much impact the future of government-funded biomedical research and funds to ensure that patients have affordable health care. The good news is that cancer research is emerging as one of the few issues where there is bipartisan support. The bad news is that there is a long way to go in the budget process and research funding is always a target.

What can we do?  We can loudly and frequently let elected officials know they should put NIH funding at the top of the priority list. Tell your Representatives and Senators your story and why it matters to your community for Congress to support NIH and brain tumor research. Speak up for all brain tumor patients at  www.braintumor.org/takeaction. It takes just one minute to send a letter to your Members of Congress.

Learn more at www.braintumor.org/advocacy.

There are countless numbers of families who are coping with the financial burden of a brain tumor diagnosis. For many, this illness can result in a loss of income, while others are left battling the complications of the insurance industry or the disability system.

Below are a few resources that can help you determine whether it is the right time to return to work, or other legal issues.

The Cancer Legal Resource Center, who was highlighted on the blog yesterday, is a national joint program that provides free information on cancer-related legal issues to cancer survivors, caregivers, employers and others coping with cancer. To learn more about what they do, check out the interview with their director that we posted yesterday.

The Social Security Administration oversees two major financial assistance programs for people with disabilities. SSDI (Social Security Disability Insurance) is not a need based program but rather one that is based on past contributions to the system. Receiving SSI (Supplemental Security Income), on the other hand, is dependent on need and it is not necessary to have paid social security taxes.

Take a look at this easy table comparing the two financial assistance programs.

Remember, there are laws to protect you during these challenging times and it is important to listen to yourself when choosing to return to work.

Blog repost from 9/30/10

The Cancer Legal Resource Center has put on some great Cancer Rights Conferences around the country throughout 2011, most recently on October 21 in Michigan. Below is a 2010 interview with Joanna Morales, Director of the Cancer Legal Resource Center, where she talks about the services CLRC offers and provides basic information about legal rights for brain tumor patients and families.  

Tell us about CLRC and how brain tumor patients and their families can benefit from your services?

The Cancer Legal Resource Center (CLRC), a national, joint program of the Disability Rights Legal Center and Loyola Law School, provides free information and resources on cancer-related legal issues, including employment and taking time off work, insurance options and navigation, access to care and government benefits, and estate planning. The CLRC provides a toll-free, nationwide Telephone Assistance Line (866-THE-CLRC), hosts an educational website at www.CancerLegalResourceCenter.org, and conducts free educational seminars and conferences throughout the country. Our goal is to educate people about their rights and options, giving them the tools to navigate through cancer-related legal issues.

Many brain tumor patients who are working often have to take time off for their MRI appointments or other follow-up care. What should patients know about their rights as employees? Is this different for caregivers?

Different federal and state laws offer protections to employees and their caregivers. The Family and Medical Leave Act (FMLA) provides 12 weeks (within a 12 month period) of job protected and health insurance protected time off to employees who are unable to work due to a serious medical condition or who need to take time off to care for their spouse, child, or parent. Some states have similar statutes that also extend this protection to domestic partners. The leave time allowed under the FMLA is a total of twelve weeks, so it does not have to be used in a twelve-week block of time. Leave can be taken in intervals. For example, you can take a few weeks off, then return to work, then take off every Friday for follow-up visits to your doctor. In order to qualify for FMLA protections, the employer must have 50 or more employees at your worksite or within a 75 mile radius of your worksite, and the employee must have worked for the employer for a minimum of 12 months and at least 1250 hours within those 12 months.

The Americans with Disabilities Act (ADA) may also provide some protections for employees with cancer and their caregivers. Under the ADA, eligible employees and caregivers are protected against discrimination in the workplace. In order to be eligible to receive the ADA’s protections, an employee must be able to perform the essential functions of the job and must have a disability under the ADA’s standards. The ADA defines a disability as a physical or mental impairment that substantially limits a major life activity. Major life activities can include walking, talking, sleeping, thinking, communication, concentrating, or operation of a major bodily function. Caregivers are also protected against discrimination in the workplace for “associating with” a person with disability.

In addition to protection against discrimination, individuals with disabilities under the ADA are also entitled to reasonable accommodations. Reasonable accommodations are things that can help an employee continue to work, such as telecommuting, changing work schedules, longer or more frequent rest breaks, or changing the physical environment of a person’s workplace. Employers are required to provide reasonable accommodations to eligible employees, as long as the accommodation does not pose an undue hardship on the employer. Employees typically make the request for a reasonable accommodation and the employer and the employee are supposed to engage in a conversation about what types of accommodations would be appropriate.

So, for example, if an employee is requesting time off work for MRI appointments, perhaps only requiring a longer lunch period, or working longer hours on other days during the week, this may be considered a reasonable accommodation under the ADA. For more information about the federal and state laws that protect the rights on employees with cancer, please contact the CLRC at 866.843.2572.

The cost of health care is a burden for many families. They can often fall behind in bill payments and can be consumed by credit card debt. What do families need to know about their rights regarding medical debt?

Medical debt is a serious issue, as over 60% of all bankruptcies in the United States are caused by medical debt and a large majority of those filing bankruptcy actually had health insurance.

The first step is trying to avoid medical debt. Patients should always review their medical bills for a number of reasons:

1. You want to make sure the bill is accurate (typos, incorrect dates, etc.).
2. You can request an itemized copy of the bill and compare it to the hospital’s standard charges to make sure you are not being overcharged.
3. If you are being denied coverage for a particular service, then you want to find out why, and see if you can appeal the decision through the insurance companies internal appeals process and/or your state’s external appeals process.

The second step is to try to manage medical debt. Once you know that a bill is accurate and you are responsible for the amount of the bill, you can usually negotiate a payment plan with a provider. That way, you can make smaller payments and the payment plan will not negatively affect your credit. Many people choose to pay their bills by credit card and then are unable to pay their credit cards bills and end up in serious medical debt. It is also common for people to take out a second mortgage to pay their medical bills. It is never a good idea to turn unsecured debt (credit cards, medical bills, etc.) into secured debt (mortgage, etc.), because then you are securing the debt with something that you can lose. If you can’t pay the second mortgage, you will lose your home.

It is important to try to keep your bills organized and never ignore a bill. Just because you haven’t heard from anyone about the bill doesn’t mean that it has gone away. Some hospitals also have patient advocates to help patients navigate through their medical bills and payment options.

Finally, it is a good idea to learn about your consumer rights before making any decisions with respect to medical bills or other financial decisions. If you are already in a situation where you have medical bills that have been sent to a collections agency, the Fair Debt Collection Practices Act protects consumers again harassing debt collectors.

For more information about federal and state laws that provide consumer protections related to medical bills, contact the CLRC at 866.843.2572.

Some brain tumor patients participate in clinical trials. Do health insurance companies cover the cost of care? What are the legal considerations?

A patient who is considering participating in a clinical trial should definitely check to see if their insurance company is going to cover the routine costs of care (office visits, lab tests, screening scans, etc.) while they are participating in the trial. Most companies or institutions sponsoring clinical trials will only cover the cost of the drug, procedure or product that is being tested. Many insurance companies will refuse to cover the routine costs, leaving patients to pay for those costs out-of-pocket.

Some states have laws that protect patients, requiring insurance companies to cover the routine costs of care while a patient is participating in a clinical trial. There are currently 23 states that require health insurance plans to cover the routine care costs of a clinical trial, including: Arizona, California, Connecticut, Delaware, Georgia, Louisiana, Maine, Maryland, Massachusetts, Missouri, Nevada, New Hampshire, New Mexico, North Carolina, Ohio, Rhode Island, Tennessee, Vermont, Virginia, West Virginia, Wisconsin, Wyoming, and the District of Columbia. However, each state’s law is different.

In addition, under the Patient Protection and Affordable Care Act (aka - health care reform), insurance companies will be required to cover routine care costs of clinical trial across the country. However, this provision of the Affordable Care Act will not go into effect until January 1, 2014. Until then, state protections are the only protections for people participating in a clinical trial.

For more information on your state’s regulation of health insurance coverage for clinical trials, please contact the CLRC or your state’s insurance agency.

Disclaimer
This publication is designed to provide general information on the topics presented. It is provided with the understanding that the author is not engaged in rendering any legal or professional services by its publication or distribution. These materials should not be used as a substitute for professional services.

Blog repost from 9/29/10

(The following is a press release from the British Medical Journal (BMJ). To read the full research article, please visit the BMJ website.) 

Biggest ever study shows no link between mobile phone use and tumours

There is no link between long-term use of mobile phones and tumours of the brain or central nervous system, finds new research published on bmj.com today.

In what is described as the largest study on the subject to date, Danish researchers found no evidence that the risk of brain tumours was raised among 358,403 mobile phone subscribers over an 18-year period.

The number of people using mobile phones is constantly rising with more than five billion subscriptions worldwide in 2010. This has led to concerns about potential adverse health effects, particularly tumours of the central nervous system.

Previous studies on a possible link between phone use and tumours have been inconclusive particularly on long-term use of mobile phones. Some of this earlier work took the form of case control studies involving small numbers of long-term users and were shown to be prone to error and bias. The International Agency for Research on Cancer (IARC) recently classified radio frequency electromagnetic fields, as emitted by mobile phones, as possibly carcinogenic to humans.

The only cohort study investigating mobile phone use and cancer to date is a Danish nationwide study comparing cancer risk of all 420,095 Danish mobile phone subscribers from 1982 until 1995, with the corresponding risk in the rest of the adult population with follow-up to 1996 and then 2002. This study found no evidence of any increased risk of brain or nervous system tumours or any cancer among mobile phone subscribers.

So researchers, led by the Institute of Cancer Epidemiology in Copenhagen, continued this study up to 2007.

They studied data on the whole Danish population aged 30 and over and born in Denmark after 1925, subdivided into subscribers and non-subscribers of mobile phones before 1995. Information was gathered from the Danish phone network operators and from the Danish Cancer Register.

Overall, 10,729 central nervous system tumours occurred in the study period 1990-2007.

When the figures were restricted to people with the longest mobile phone use – 13 years or more – cancer rates were almost the same in both long-term users and non-subscribers of mobile phones.

The researchers say they observed no overall increased risk for tumours of the central nervous system or for all cancers combined in mobile phone users.

They conclude: “The extended follow-up allowed us to investigate effects in people who had used mobile phones for 10 years or more, and this long-term use was not associated with higher risks of cancer.

“However, as a small to moderate increase in risk for subgroups of heavy users or after even longer induction periods than 10-15 years cannot be ruled out, further studies with large study populations, where the potential for misclassification of exposure and selection bias is minimised, are warranted.”

In an accompanying editorial, Professors Anders Ahlbom and Maria Feychting at the Karolinska Institutet in Sweden say this new evidence is reassuring, but continued monitoring of health registers and prospective cohorts is still warranted.

Contacts:
Research: Patrizia Frei, Postdoctoral Research Fellow, Swiss Tropical and Public Health Institute, Basel, Switzerland
Tel: +41 61 284 83 46; Out of hours (mobile): +41 76 516 03 30
Email: frei@cancer.dk

Editorial: Professor Anders Ahlbom, Institute of Environmental Medicine, Karolinska Institutet, Stockholm, Sweden
Tel: +46 70 324 74 70
Email: anders.ahlbom@ki.se

In March 2010, My.BrainTumorCommunity.org was created to provide you with a space where you could go to get support from others in the brain tumor community – others who knew what you were going through. To help provide you with some resources and information straight from the source, we created the “Headquarters” Blog. From how do deal with hair loss to how to go about getting a second opinion, the topic possibilities were endless. But we realized that this blog offers an even greater opportunity to give you more information, from more “arms” of the brain tumor world.

For that reason, starting next week, you will see blogs from more departments, like the Office of the Executive Director, Research, and Public Policy Advocacy. We want to keep you updated on the research that the National Brain Tumor Society is funding as well as other research advancements so you understand how these advancements affect you. We want to provide insight into our public policy advocacy efforts so you can better understand how you can make a difference. And we want to keep you informed of how NBTS as an organization is here for you.

As these new blogs are developed, we encourage you to comment or ask questions, or even make suggestions for new topics that have you scratching your head (Always wanted to know what a particular piece of research is getting at? Not sure how to advocate in your own community?). We may be writing the blog, but it is for you and we look forward to your contributions!

Once surgery and treatment have come to an end, patients may enter a new world of care called rehabilitation, or physical therapy. Here is a list of resources to help educate patients about the benefits of this important follow-up care.

A helpful place to get connected to information can be through your state Department of Rehabilitation. If you click on their resources tab, you can read more about employment assistance, assistive technology, benefits, disability organizations, and much more all within your state.

If you are looking to get connected to a physical therapist in your area, you can refer the American Physical Therapy Association’s directory to search for one within a certain mile radius of your home.

You can also try visiting The American Occupational Therapy Association, Inc. to learn more about occupational therapy and its benefits, through informative factsheets, podcasts, and resources.

Returning to work after a brain tumor can come as a daunting thought for many. The Job Accommodation Network, provided by the U.S. Department of Labor's Office of Disability Employment Policy, assists those with disabilities, families and employers with the appropriate job accommodations they may need before returning. Check it out!

If you have other questions, be sure to share them with your doctor.

Today, in honor of National Physical Therapy Month, we wanted to provide you with more information on rehabilitation and how it can help. The following comes from Mary Lovely, NBTS Research Officer:

Having a brain tumor often brings on neurological problems. Weakness on one side of the body, visual changes, hearing or even visual-spatial disorientation makes the activities of daily living really hard. While the neurological issues can’t be removed completely, rehabilitation helps a person live as optimally as possible. Rehabilitation is the science and art of moving someone to his/her fullest potential after a disability. Every person has unique needs, so an individual assessment is taken, then a plan is made tapered for the specific needs and realistic outcomes are developed with the survivor and therapist. The therapists involved are the physical therapist, occupational therapist, and neuropsychologist.

A physical medicine and rehabilitation doctor may also be part of the team. If disabilities occur after surgery, rehabilitation may be initiated for a few weeks to regain function and strength before moving on to further treatments. One study (Mukand et al., 2001) showed a significant increase in functional ability in a group of brain tumor survivors who were admitted to inpatient rehabilitation after surgery. Greenberg et al., (2006) also showed major increases in functional ability after rehabilitation.

Functional abilities may change over time. Sometimes a person is worse at the beginning and better later. On the other hand, a person may become more disabled. Rehabilitation can be started anytime. If a new weakness arises a physical or occupational therapist may visit the home to evaluate the problem and work with the survivor and caregiver to provide the most independence and optimal care. One ten-year brain tumor survivor in my support group has muscle weakness and difficulty walking. A physical therapist friend has committed to come to her house every week. The survivor’s walking is slowing improving and she is becoming more independent.

Rehabilitation can make a big difference in order to live optimally.

Have you had trouble with falls or had difficulty getting around? Have you had experience with physical or occupational therapy? What tips do you have to share? Leave a comment below!

Blog repost from 5/24/10

Have you ever wondered what is new in the brain tumor world? Have you been curious about clinical trials, how to choose a trial, or how to enroll?  If so, these resources are for you!

NBTS recently launched a Clinical Trial Matching Service (877 769 4812) that provides a way to connect patients to appropriate clinical trial options. The service compares the patient’s situation to a database of trials and searches the trials’ eligibility criteria for a match.

Try downloading the NBTS Clinical Trial Overview and How to Find and Access Clinical Trials factsheets to get you started with the basics about clinical trials.  You can also review our Clinical Trials FAQ for even more information.

In addition to the NBTS Clinical Trial Matching Services, there are a couple other resources that can be helpful for finding trials. People can look for clinical trials specific to the patient’s age, tumor type, and prior treatment to identify trials the patient may be eligible for. Here are a couple of options:

The National Cancer Institute also has a clinical trial database with a variety of search features, including location, treatment type, and trial phase.

You can also try ClinicalTrials.gov.  The “Basic Search” option is quite straightforward for a general listing, whereas the “Advanced Search” option gives users more power to customize their search.

Finally, check out VirtualTrials.com for listings of new trials and an email newsletter highlighting the latest in brain tumor research findings.

National Brain Tumor Society

Connecting with others is an important way to find information, support, and hope. This resource list includes information to help you and/or your loved one find the support you need to stay strong.

Adults

CancerCare
800 813 4673
Offers free counseling from compassionate, professional, oncology social workers, both over the phone and face-to-face (New York, Long Island, Connecticut and New Jersey).

American Psychosocial Oncology Society
866 276 7443 (Helpline) (phone)
The American Psychosocial Oncology Society (APOS) was established for cancer patients and their caregivers to locate local referrals for counseling and support services. The APOS Helpline is a referral program connecting patients or patient advocacy organizations to psychiatrists, psychologists, nurses, and social workers skilled in the management of cancer-related distress.

Young Adults

I'm Too Young For This! Cancer Foundation
Provides age-appropriate support to young adults with cancer through the use of social networking events, advocacy, peer counseling, scholarships, happy hours and much, much more!

Pediatric

SuperSibs!
866 444 SIBS (7427)
Provides support services and resources for siblings (between ages of 4 – 18) of children with cancer and their family members.

1-1 Peer Support

Imerman Angels
877 274 5529
Imerman Angels 1-on-1 Cancer Support carefully partners anyone seeking cancer support with someone similar - the same age, same gender, with the same type of cancer.

Also read the NBTS Find Support page for more information.

What are some of your go-to support services?

National Brain Tumor Society
 

The list below highlights some of the resources that are available for childhood pediatric brain tumor patients and their family members.

For Brain Tumor-Specific Information, Support and Education:

Children's Brain Tumor Foundation
www.cbtf.org
866 228 4673
Offers information and support to patients and families of children with brain and spinal tumors. They have a wonderful free publication called "A Resource Guide for Parents of Children with Brain and Spinal Cord Tumors."

Pediatric Brain Tumor Foundation
www.pbtfus.org
800 253 6530

For Financial Assistance:

First Hand Foundation
www.firsthandfoundation.org
816 201 1569
Assists individual children who was health related needs and no financial resources to cover these expenses.

National Children's Cancer Society
www.nationalchildrenscancersociety.org
314 241 1600
Provides financial assistance and in-kind assistance to children with cancer.

United Healthcare Children's Foundation
www.uhccf.org
952 992 4459
Offers financial assistance to cover medical services beyond what insurance will cover or if services is not covered by the policy at all. Generally assistance must be requested before services are obtained and funds will generally be paid directly to the facility. Grants up to $5,000 per year, with a lifetime cap of $7,500.

Foundation for Children with Cancer
www.childrenwithcancer.org
314 843 9300
Family must be referred by a healthcare professional and payments go directly to the vendor. There is currently a $500 limit per family.

Mission4Maureen
http://mission4maureen.org
Dedicated to providing financial assistance to families who are burdened with the staggering cost of brain cancer treatment. Financial aid is available for medical bills as well as child care, housing payments, utility bills, transportation, medication, and other areas of assistance. An application with supporting documentation is required.

American Cancer Society
www.cancer.org
800 227 2345
Has a Gas Card program and a Road to Recovery Program. In some local offices, the Road to Recovery Program connects patients/families to volunteers who are willing to drive the family to and from treatment.

For additional pediatric brain tumor resources, check out our online Resource Directory.

Are there others that you have found helpful? Please share.

National Brain Tumor Society

Image: LeMaze Studio

Here is a list of resources for managing financial concerns and getting assistance with a variety of treatment-related and other expenses:

CancerCare (800 813 4673) provides free support services with licensed social workers. The staff can help callers locate resources and get connected with services they need. CancerCare also provides limited financial assistance for certain diagnoses.

Patient Advocate Foundation (800 532 5274) has a general phone line staffed by case managers who can answer insurance questions and help patients locate financial resources.

American Cancer Society (800 227 2345) offers a searchable resource directory and limited financial assistance. Gas cards or transportation services are available in certain areas.

Needymeds maintains a website to help people identify patient assistance programs for generic or brand name drug costs. This is designed primarily for patients who have little to no insurance.

2-1-1 is a service offered by the United Way. Dial 2-1-1 on a local telephone to reach a referral search operator in your area. They can help locate local resources that may assist with living expenses, such as rent or utility payments.

Families USA: Your Medical Bills: A Consumer’s Guide to Coping with Medical Debt is a brochure designed for families who are in search of health care coverage or who face medical debt and are looking for ways to manage it.

What financial and insurance-related resources have you found to be helpful? Let us know what you think! Also, check out the NBTS Financial and Insurance Resources page for additional listings.

National Brain Tumor Society

This week our team will be highlighting some of our go-to resources for brain tumor patients and their family members.

Here's what's lined up for the week:

• Tuesday: Financial and Insurance Resources
• Wednesday: Pediatric Brain Tumors
• Thursday: Support Services
• Friday: Clinical Trials

We hope this week will be "resourceful" for you and your loved ones!

To kick off the week, check out our resource directory listing of Brain Tumor and Brain Tumor-Related Organizations.

Please also chime in on what resources and support services have been most helpful to you throughout your experience by leaving a comment!

National Brain Tumor Society

Happy Friday! Here's a little poem to send you into the weekend.

Look to this Day:
For it is life, the very life of life.
In its brief course
Lie all the verities and realities of your existence.
The bliss of growth,
The glory of action,
The splendour of achievement
Are but experiences of time.
For yesterday is but a dream
And tomorrow is only a vision;
And today well-lived makes
Yesterday a dream of happiness
And every tomorrow a vision of hope.
Look well therefore to this day;
Such is the salutation to the ever-new dawn!

- Kalidasa

Have a nice weekend everyone.

Patient Services Team

This week’s story comes to us from Jordan. Jordan, age 27, is a radiation therapy technician and a caregiver for his mother who was diagnosed with a GBM in 2007. He describes his experience below.

Please tell us a little about your life at the time your loved one was diagnosed.
I had just graduated from radiologic technology school and was preparing to attend radiation therapy school at MD Anderson Cancer Center. A couple of days before receiving my acceptance letter, we found my mother’s brain tumor at the clinic I was working at.

How has life changed since then?
The only thing that has changed is that we all get nervous every three months around the time of mom's MRI.

What is one piece of advice you would have for a new caregiver?
Just simply being there to listen is one of the greatest things you can provide the people coping with this disease. They are often bombarded by people telling them treatment options, statistics, and appointments. Often all they want is someone to listen to them.

What has been the most rewarding or challenging part of caregiving for you?
Hearing the simple words, “Thanks, you really helped me”.

What is the most helpful thing someone has said or done for you?
Once, a family member of a patient called and asked end of life questions and coping mechanisms. A few days later, they called back and told me their loved one had passed away. The family member then proceeded to tell me that because of my explanations they knew they would be able to better cope with the situation.

Do you have any suggestions for ways caregivers can care for themselves?
Stay educated and be a great listener.

Describe your experience/journey as a caregiver in three words:
Rewarding, humbling, unique.

As a long-distance caregiver for your mom, what do you do to stay connected? In what ways do you find it challenging?
The long distance caregiver relationship for me is indeed long distance. I live in North Carolina and my mother lives in Texas. The distance between us is about 17 hours or 1,050 miles.

The most important aspect of staying connected is frequent communication. Not only is this therapeutic and comforting in regards to my mother knowing I care, but it also allows me to assess her current health physically, mentally, and emotionally. The communication on a regular basis allows me to see any discrepancies in behavior or developing trends. Our communication method is mainly by telephone. We also use email and Facebook. The telephone conversations allow me to hear speech issues or patterns like memory loss, word recognition, or pronunciation.

Our communication by email and Facebook gives me the opportunity to see things such as spelling issues and word selection. I hope to add the use of Skype (video chat) for both of us later this year so we can talk and see each other. This would allow me to be present at her doctor’s appointments with the use of the iPhone and the Skype application. The most difficult element of being a long-distance caregiver for my mother is the lack of immediate physical presence. I am unable to attend most of her appointments. Many times she is overwhelmed at doctor’s appointments by all of the information and becomes stressed. I feel that much of this stress could be alleviated by me being with her. Though I am only a phone call away, physical presence is a very important dimension in caregiving. It is also challenging because of the statistics of a GBM. Though my mother has defied the odds thus far I have been unable to spend as much time with her due to distance. This makes the time that I spend with her even more valuable. Thanks to the internet, we are able to see each other by sending pictures back and forth.

Thank you for the opportunity to share, I am proud to be a part of the NBTS.

Blog repost from 6/22/10