We have updated Summer Camp resources for children with disabilities. Camp listings are for day and residential camps. Camps are located in Massachusetts, New England, and beyond. Check our listings for specific camp information and openings. Cost varies by type of camp and programs offered.
Camps offer a big range of programs and activities. Camps may have available openings and wait lists. Each camp has its own eligibility requirements. If you have questions, please contact each camp for details.
Over the past few weeks we have talked about the impact of invisible symptoms of MS. Symptoms can impact a person’s job, relationships, and ability to manage independently. Some resources to help provide support are listed below.
Medical Team
The medical team for a person with MS should include a variety of professionals. The neurologist is usually the primary healthcare professional and can often be the gateway to other professionals through referrals.
The MS Clinical Care Network: Available through the NMSS website, this resource offers information tailored specifically to different professionals. Clinicians can also sign up for a professional e-newsletter.
Partners in MS Care: Health care professionals recognized as Partners in MS Care demonstrate knowledge and experience in MS care, have a special interest in treating people living with MS and work closely with the National MS Society. To find a Partner in your area visit Partners in MS Care.
Emotional Support
Emotional support or services can be critical to keeping a family afloat. It may be important to have a therapist familiar with MS or chronic illnesses.
The National MS Society maintains a database of professionals with experience and interest in treating people with MS and a network of peer-led support groups. Please call 800-344-4867 to request referrals in your area.
Msconnection.org is a website for people with MS to connect with other people with MS. The site offers one-to-one peer connections, forums and resources.
Some people have a hard time accepting help and an even harder time telling people what would truly be helpful. There are programs to help coordinate the efforts of caring friends and family and to guide them toward what would be most useful.
CaringBridge is a free service that connects and updates your network about ongoing health status, treatment, surgeries, progress in therapies and recovery. In return, family and friends give support and coordinate volunteering for tasks.
Lotsa Helping Hands is a free web-based service that allows family and friends to more easily assist with household tasks. It’s an easy-to-use, private group calendar, specifically designed for organizing helpers. It’s also a place to keep your network informed with status updates, photo galleries, message boards, and more.
I hope you found the information about MS posted this month to be informative and interesting. Please feel free to contact the National MS Society at 800-344-4867 with any additional questions.
March 11-17th is MS Awareness Week!!! It is the perfect time to join and help build the MS Movement. Visit msnewengland.org and look for the MS awareness week banner for ideas about how can get involved!
Over the past three weeks, we have discussed some of the invisible symptoms that are associated with Multiple Sclerosis (MS). Challenges that people with MS may be facing every day, but others aren’t aware of. Awareness of these invisible symptoms is especially critical for caregivers.
We focused on depression and cognition, but other invisible symptoms can have a significant impact on daily activities and quality of life. Symptoms like pain, visual disturbances, fatigue, and bladder dysfunction might go unnoticed by friends and family, and it is extremely important for caregivers to have awareness and knowledge of them.
The simple fact is when invisible symptoms are addressed, it can truly make a difference.
Stepping In
When MS impacts a person’s ability to manage independently, someone may need to step in to help. That someone can be a spouse, partner, an adult child, parent, sibling, or even a close friend.
The key to being a good helper is knowing what the person needs and invisible symptoms can pose a challenge to understanding those needs. Symptoms can even change day to day, creating more confusion about the appropriate types and levels of support.
Two Way Communication Is Vital
Bob’s* wife, Paula, has MS and he has been her primary caregiver for more than 20 years. Paula has used a wheelchair for 15 years and most days Bob feels confident helping her dress and transfer to her chair. But when her MS symptoms flare up, Paula can have new symptoms of pain and double vision.
Bob shared that he never knows what each day will bring, and he relies on Paula to tell him how she is feeling so that he can adjust their routine. Two-way communication is important, as it makes it easier for both Bob and Paula to have a clear understanding of needs and expectations.
Caregivers Taking Care Of Themselves
It is important to remember that the caregiver must take care of their own physical and emotional health too. The risk of caregiver burnout can be very real, but there are steps to help avoid or reduce it.
Seeking emotional support and arranging for additional help can allow the caregiver to focus on their needs and remain a strong support for the person with MS.
The National Family Caregivers Association and www.Caregiver.com are organizations that focus on supporting the caregiver. The National MS Society also offers information and resources for caregivers. You can view these materials at National MS Society Caregiver Resources Page or call the Society’s information and resource line at 800-344-4867.
Please join us next week as we review some helpful resources for living with MS.
This week Dawn Russo, Senior Program Manager of the National Multiple Sclerosis Society, will focus on cognitive changes in MS. Like depression, cognitive changes may be invisible to family and friends. But for the person experiencing them, the impact can be stressful and far-reaching.
Understanding the cognitive impact
Approximately 50% of people with MS will experience some cognitive impairment because of the MS. Impairments can include memory problems, difficulty with attention and concentration, processing information slower, and/or issues with problem solving, and organizing. For most, these issues will be mild to moderate. However, for a small percentage cognitive impairments can become severe and impact daily living.
Individuals can have many reactions to cognitive changes: embarrassment, frustration, depression, and/or anger. They may choose to ignore or minimize them.
Keeping control, but asking for help
I am currently working with Joe, a 55 year old man with MS, who wanted to apply for funding to have a stair lift installed in his house. Always independent, it was hard for Joe to ask for help. Despite offers of help from his friends, Joe insisted he could manage the application on his own.
Several weeks later, Joe had not completed the application and had lost one of the documents. It was difficult for Joe to admit he was struggling with the paperwork he could once do without help. Before offering help, I made sure Joe knew he would still be the decision-maker and have control over this process. Once we agreed how to work together, we were able to complete the application and approve his request without further delay.
Some possible signs of cognitive changes include: poor follow through of agreed upon action items; forgetting details of conversations; missing pre-scheduled appointments; etc. The impact can be far reaching, ranging from an inability to balance a checkbook to remembering to take medications to missing a deadline at work.
If unaddressed, cognitive impairments could lead to home safety issues, jeopardize a person’s employability and/or ability to live independently. Some people with MS fear they will be fired if co-workers learn about their cognitive changes, and they leave work prematurely. In other cases, family members may question the person’s ability to manage on their own or want to take away responsibilities.
A role for family and friends
Like other invisible symptoms, it may be easiest to deal with the issue once it’s out in the open. Engaging family and friends and educating them about MS may be the biggest strategy a person can implement.
Trying to support a person without knowing what kind of help they truly need is an uphill battle. In working with Joe, I didn’t know if he was facing challenges with reading the application, filling it out online, coordinating bids from contractors, or paying the balance.
In further conversations,, I learned he was overwhelmed by the process and struggling with organizing the supporting documents that were required to apply for financial assistance. He needed assistance breaking down the application in simpler steps and a plan for addressing each step. Once we created that plan, Joe felt less stress and successfully completed the application.
There are strategies and treatments options that can be explored to help manage these symptoms. Addressing cognitive issues may include rehab services, assistive technology, organizational strategies, and medication. The National MS Society has further information on cognitive resources on our website and in print.
I hope you will join us again next week when we look at the impact of invisible symptoms on caregivers.
Years ago, I had the privilege of meeting Alex Brejcha while we worked together to find an accessible home for he and his wife, Tatiana. Alex was prepared to purchase a home and we had funding for modifications, yet the challenges in finding a home that could be modified for accessibility were overwhelming to say the least.
Yet Alex never gave up. In the process, his persistence, positive outlook and sheer determination were a lesson for us all.
This week I am pleased to introduce Alex as our guest blogger to share his personal thoughts about living with M.S.
Diagnosis and Early Symptoms
M.S. is a neurological disorder impacting the ability of nerves to transmit signals from brain to body. The biggest problem is that there are a variety of different ways that this impacts people.
In my case, the initial diagnosis was made in 1980 when tingling in the hands and coordination impairments immediately had a major impact on my life. I was an art student at Temple University in Philadelphia with a gallery interested in my work, but I did not have enough pieces yet for a show.
A combination of symptoms complicated things. I had visual problems which fortunately cleared up, but increasing coordination problems ended my art career hopes, and walking problems diagnosed in 1980 progressed to paraplegia between 1980 and 1985.
The good and bad of research
In retrospect I realize that part of this was my own fault, because another aspect of M.S. is that Affect has a very real Effect. In other words: attitude is a bitch, if you forgive the language.
To clarify: I was very fortunate to work graveyard shift at a major teaching hospital in Philadelphia for 27 years. We had an excellent medical library, and the first thing I did upon my diagnosis was go to the library to research what M.S. was.
This was a big mistake! What I failed to realize was that medical journals concentrate on the worst aspects of a disorder. As I was reading, I made the mistake of believing that what “might” happen “would” happen — and my body happily went along with it!
This is a crucial aspect of Multiple Sclerosis which people need to understand if they are diagnosed. This is a condition with a variety of forms ranging from mild to more progressive types such as I have.
Life is what you make it
It is critical to work closely with a neurologist specializing in this condition in order to take advantage of improving treatment paradigms that are being developed. Just because you are diagnosed with this disorder, it does not mean an end to your life.
As I wrote, I worked for 23 years in a wheelchair and drove independently — first in cars with hand controls, and later in a variety of converted vans. One advantage of the diagnosis was that I had a handicapped parking spot right outside the entry to the hospital and I didn’t have to pay for parking in the hospital garage.
To borrow a cliché: life is what you make it!
I never would have had the relationships I have been lucky to have (including a wonderful five year marriage to a woman I still live with), if I had not been diagnosed with M.S. The truth is, before M.S. I was a terminally, overly shy nerd, afraid to approach a woman.
But when everyone is staring at you anyway: what the hell?
To begin the year, we introduce Dawn Russo, Senior Program Manager for the National MS Society. Dawn will be sharing her thoughts about how to support people with MS beyond their physical needs.
There are many challenges to living with a chronic illness, but the “invisible” symptoms that a person with multiple sclerosis may face can be uniquely challenging. Invisible symptoms can include pain, fatigue, cognition, bladder problems, numbness, etc. Without specifically sharing the details of these symptoms, friends and family may be unaware of the impact they have on a person’s daily life.
This is true of one of the common symptoms of MS: depression. Studies show that the MS population has a higher prevalence of depression than the general population. Unlike the physical presence of a wheelchair, depression is not immediately identifiable and people may do their best to hide this symptom. Unless someone tells you about the challenges they are facing due to depression, this struggle may go unrecognized.
Causes For Depression
MS can progress differently in different people and not knowing what the future may hold can make it difficult to cope. In addition, the losses that people face as the disease progresses can be particularly challenging, such as leaving a career, giving up certain activities, changes in relationships, etc.
Depression can be a direct result of the disease as well. MS is a disease of the central nervous system, and as the myelin that protects the nerve fibers is attacked, parts of the brain that control our emotional responses can change. Depression can also be a side effect from medications.
What to do about it
If you suspect that you or someone you know is struggling with depression, there are steps to take. A mental health professional can help to identify if those feelings are true depression and what treatment options are available. The National MS Society has information on our website and in print. We have support groups throughout our chapter area and can provide referrals to professionals with experience working with people with MS.
Just because we can’t see something, doesn’t mean it isn’t there. And sometimes what we can’t see can be the hardest to deal with. Depression, like other invisible symptoms, can impact your everyday life and activities. It can also impact your family, friends and caregivers. Through my role at the Chapter, I speak with many people who have MS or who have loved ones with MS. The impact of depression can be significant and reduce quality-of-life.It can be hard admitting that depression is real, that you need help, and seeking help.
But help is available. You just want to be sure to have the conversation if needed.
One of our future blogs will discuss the impact of invisible symptoms on caregivers. Next week, we’ll hear from Alex about his experience with MS. Hope you will join us then!
Jane’s story this month illustrated just one experience with MS; the unpredictability of the disease causes everyone with MS to experience it in a different way. But many people also struggle with similar challenges. MS attacks the central nervous system of the individual diagnosed, but its impact has a ripple effect on their family, career, life plan, and the community.
This week we share the comprehensive resources available to all people with MS, their families, friends, and providers.
To learn about multiple sclerosis:
The National Multiple Sclerosis Society website has extensive information on MS. www.nationalmssociety.org You can also call our Information Resource Center at 800-344-4867.
To learn about local programs:
The Greater New England Chapter serves 19,000 individuals and families affected by multiple sclerosis in Maine, Massachusetts, New Hampshire, and Vermont. www.msnewengland.org
If you or a loved one is Newly Diagnosed:
You can receive information through our Knowledge is Power Program, a free, at-home educational series written by Dr. Rosalind Kalb, a highly regarded author and psychologist. Receive new topics each week in the convenience of your home. Knowledge is Power
If you would like to speak to a peer with MS:
The Peer Support Program offers information, emotional support and encouragement via the telephone to individuals living with MS and their families. The program matches trained volunteers with individuals looking for support with their own MS experiences. Peer Support Program
If you would like to learn about the Greater New England Chapter’s Financial Assistance Program:
We recognize that MS is a costly disease and encourage all individuals who need help to apply. Any person diagnosed with MS, living in Maine, Massachusetts, New Hampshire or Vermont is eligible. The Chapter can provided limited funding in select categories. Financial Assistance Program
If you feel you need more comprehensive support:
Home LINKS is the Greater New England Chapter’s short-term care management program. The goal of Home LINKS is to promote enhanced quality of life and independence for people living with MS. This program helps by providing information and referral, hands-on assistance, and financial assistance. Home LINKS
If you are a professional who works with people with MS:
The National MS Society’s Professional Resource Center is the most comprehensive library of MS information in the world, offering information, publications, clinical consultations, and literature search services. Professional Resource Center
Dawn Russo, Senior Program Manager of the Greater New England Chapter of the National Multiple Sclerosis (MS) Society, guest Blogger
Over the past few weeks, we have learned from Jane’s story that life with MS can be unpredictable and challenging at times. This week we look at Jane, now 25 years since her diagnosis, as she shares the community of support that helped her each step of the way.
Secondary Progressive MS
Twenty years after her diagnosis, Jane’s symptoms were worse and she was recovering less between attacks. She now had Secondary Progressive MS (SPMS), a different course of the disease than she was diagnosed with initially.
Ninety percent of people diagnosed with Relapsing-Remitting MS will develop SPMS within 25 years. SPMS is characterized by less recovery following attacks; persistently worsening functioning during and between attacks; and/or fewer attacks accompanied by progressive disability.
Accessing resources through the MS Society
Though Jane’s employer was supportive, she eventually decided to leave work due to cognitive issues. Unfortunately, her husband was then laid off and they had no income or health insurance. When Jane contacted the local MS Chapter for help, the Information Specialist recommended care management services through the Home LINKS Program to help her access local programs that could provide support.
With input from Jane and her husband, the Care Manager created a “care plan” which identified issues including:
• Financial concerns
• Insurance
• Occupational therapy evaluation
• Wheelchair
• Isolation
The care manager worked with Jane and her husband for several months researching programs, helping with applications, and stabilizing their situation. Jane also applied to the Chapter’s Financial Assistance Program to help pay for vehicle modifications, which increased her independence.
Becoming involved
Once their situation was stabilized, Jane wanted to get more involved with the National MS Society. After such a stressful year, she had fun with her family at the Chapter’s Holiday Party and her daughter was able to meet other teens who have a parent with MS.
Dawn Russo, Senior Program Manager of the Greater New England Chapter of the National Multiple Sclerosis (MS) Society, guest Blogger
Motivated by this feeling of community, Jane reached out to friends and created a team for the MS Walk. Her team now has 20 members and enjoys a great day walking together to fight MS. Jane feels optimistic knowing she is helping to contribute to the almost 325 individual research projects worldwide supported by the Society.
Next week we will introduce the wealth of resources available on our website at www.msnewengland.org . You will also learn more about how you can join us as we move forward toward a world free of MS.
Last week we met Jane as she was diagnosed with Multiple Sclerosis (MS). Ten years later, Jane has found that many of her choices in life now require more thought, more planning, and more research; but she still has choices.
Use of medications
Jane’s doctor recommended that she start one of the disease-modifying medications. While there is no cure for MS, these drugs help slow the progression of MS and reduce the number of flare-ups. There are currently eight medications available. Though the drug doesn’t make Jane feel better, and she had to get used to the needles, she is committed to her treatment plan.
A wife and a mother
Jane’s other concern was her family. She was worried about pregnancy and caring for a baby due to her struggles with fatigue. She contacted the National MS Society for information and through the Chapter’s Peer Support Program, she connected with a mom who has MS and learned through someone else’s experience.
Jane’s daughter, Mary, was born 5 years ago. Jane experienced a flare-up of her symptoms six months after the birth, which was successfully treated with steroids.
Like many people, Jane and her husband sometimes feel that MS is the uninvited guest in their house. Though unspoken, it is part of every conversation. Jane found support from her peer counselor, who also felt the impact of MS on her marriage. Jane’s husband finds it helpful to speak with a therapist who has experience with chronic illness.
Jane feels impact on her career
It was hard to coordinate the daycare schedule, manage her fatigue, and keep up with the fast pace of her job as an ER nurse. Jane called the Chapter about her situation. The staff person consulted with her, providing information, discussing options, and supporting Jane.
It helped to have someone guide her through terms and programs, like the Family Medical Leave Act (FMLA), disclosure, and her rights as someone with a disability. She felt confident going to her employer to discuss possible accommodations and together they found a solution.
Dawn Russo, Senior Program Manager of the Greater New England Chapter of the National Multiple Sclerosis (MS) Society, guest Blogger
Jane accepted a new position that involved more desk work and no night shifts. She admits it’s less exciting, but she also takes less sick time now and spends more time with her family.
Join us next week as we visit Jane one final time to see another example of life with MS and learn more about the programs and services available from the National MS Society.
This month I am pleased to introduce our guest blogger, Dawn Russo, Senior Program Manager of the Greater New England Chapter of the National Multiple Sclerosis (MS) Society. Dawn will provide a better understanding of MS and the vast array of services available.
Dawn Russo
There are approximately 400,000 people with multiple sclerosis (MS) in the United States and most of us know someone who has been diagnosed. MS is a chronic, often disabling disease that attacks the central nervous system. Symptoms may be mild such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another. From the list of possible symptoms to its impact on a family, MS is not a simple disease.
Let’s follow Jane as she is diagnosed with MS
Jane is 32 years old. For the past week, she has experienced double vision. When her neurologist completed a full medical history, Jane remembered several years earlier that her hand had felt numb for a week. Numerous tests were given over a period of several months including an MRI that showed two lesions on her brain; a diagnosis of MS was made.
Jane was overwhelmed by the news and afraid for her future. Would she be able to continue working? Have children? It seemed like she had to learn a new language to understand all the terms she was hearing.
Jane searches for information and support
Jane contacted the Information Resource Center (IRC) at the National MS Society, Greater New England Chapter. She was unsure what to ask but the Information Specialist started at the beginning. Jane was sent basic information about MS and received a weekly packet through the Knowledge is Power Program. She joined a teleconference for people who are newly diagnosed and learned about symptom management and disclosing her MS.
Over the next few years, Jane stayed informed by reading the Chapter newsletter, attending workshops, and calling the Chapter with questions. She joined a support group and the Chapter helped her find a yoga instructor familiar with MS.
Living with MS
Jane continues to have periodic exacerbations or flare-ups, during which time she experiences a worsening of her symptoms. When this happens, Jane takes time off from work and is treated with steroids. But even with these setbacks, Jane has learned she can still work and have children.
Join us next week as we learn how Jane is doing 10 years later and how the National MS Society supports people living with MS to lead full and enriching lives.
