Tag Archives: MS Knowledge

Is This How You Feel?

Posted on by

id-10088180

Confused? Afraid? Newly diagnosed? Think you or someone you know might have MS but don’t know where to start? Weird things going on with your body and you don’t know what to do? Your neurologist is not helpful or available? Are you lost in mounds of info?  I was in these shoes once a long time ago.

Since I have lived with MS since 1980 and have been involved with the MS Community for nearly four decades, I know this disease inside and out. Seeing a great need to have a lot of credible “What-to-know—What to Do” MS information all in one place, I rolled up my sleeves and have been hard at work to help.

Managing MS a simplified, practical, all-in-one self-help guide for managing and understanding MS. I authored and dedicated this book to my MS peers to help them and their loved ones live with this invisible, unpredictable, disabling disease. Within hours, the reader will gain knowledge and support so that action can be taken enabling better control. There are many books about multiple sclerosis but I like to point out these things about mine:

• I felt it crucial to make it an easy read using a tone, words and expressions that would enable the reader to feel comfortable. Like I am talking at the kitchen table with them. Living with MS is frightening; one of my objectives was to help reduce the fear.

• Living with MS is not easy and is very complicated in many ways: the symptoms, the treatments, the medical professionals, relationships with people, the emotions, and the advancing disabilities. Thus, another objective of mine was to offer guidance and tips for managing these things in a manner that is easy to understand—like an instruction manual. I strived to make it compact, informative, and inspiring.

• This guidebook is a collaboration of both my experiences and those with peers, MS bloggers, professionals, and others that I interacted with about MS in for decades.  It was read and endorsed by health care professionals in different fields that I believe lends credibility: an MS specialist neurologist, an internist, a MS physical therapist, nurses, dietitian.

Who should read this book? Anyone who might have MS, has been diagnosed with MS, family, friends, or people who deal with MS patients such as doctors/healthcare personnel.

Diane Perry, NPC,  Consultants in Internal Medicine in Glendale stated:
“As a nurse practitioner, the book opened my eyes to the effects of the disease on my patients’ lives and their needs. This is not a textbook read.”

Carol Daily, CRNP MSN, [PwMS] in her review said “This book should be given to every person having MS, I encourage any MS organization, medical staff, family or friend to do so and to read it also, especially the medical staff, (so you guys can give better advice).”

I counsel, write, research, and advocate awareness/education of MS through my website and other social media. Continuously. This is my purpose in life,

Please go to my website, check it all out, and decide for yourself. If you do read Managing MS, make sure to tell me what you think in a review or an email through my website.

 

Debbie Petrina
Author of (2nd Edition) Managing MS 
Moderator, MultipleSclerosis.net 

 

 

 

MS Bloggers, Old MS Vets, and the MS Community

Posted on by

id-100296982

“Engage and Listen to the Real Experts”

The MS Community is unique. There is an immense connection between MSers to share, ask and learn information about living with multiple sclerosis. A comradery of support to each other to continue moving forward through good and bad times as they are saddled with a “progressive”, lifetime disease with no cure. Friendship and gratitude are beyond words to describe them.

The MSers in the MS Community work their butts off trying to create awareness, education, advocacy, and fundraise. They initiated and are now collecting patient information through iConquerMS to enhance MS research for patient treatments.

Within this community of MSers that I have been a part of for three decades, I distinguish two groups of who are the real MS experts, who can be relied upon and trusted for credible knowledge and guidance:

• The “Elite” MS Bloggers
These are MSers who have lived with MS for years, and dedicate their lives every day writing to help MS patients survive. I call them “Elite”, because these bloggers aren’t just writing stories; they immerse themselves in a variety of activities and social/media platforms related to MS for a dedicated purpose. Each one has their special purpose in the MS arena—to educate, advocate, inspire, provide humor, research, or focus on wellness such as fitness, being active, etc.

As a group, they work and share with each other and more recently, some of the best MS bloggers had the opportunity due to several Pharma summits to meet each other. Both individually and as a group, they are a powerhouse of experience and ingenuity. Prior to their roles in and for the MS community, their professional backgrounds would knock your socks off.
I know, because I have met, shared, and worked with them.

• The ‘Ol MS Vets

“The ‘Ol MS Vets” are the MSers that have lived with MS for more than thirty years. They are the ones whose life started in the Dark Ages—no MRI’s or sophisticated diagnostic tests, no Disease Modifying Treatments, limited research, scant MS awareness or literature, no social media…

‘Ol MS vets know MS well, and are full of wisdom. So many learned to manage their MS well and led full, quality lives. Yet, they are sadly passed over as a source of realistic and honest knowledge and support by non-MS patients.

It is amazing why these folks are not included in discussion panels at events. Pharma companies just within the past year or two recognized what MS bloggers could offer them. They reached out and hosted MS blogger summits to get their expertise, information and ideas to help them create their own MS support services. Then they took a step further and invited these MS experts to lead workshops around the country on specific MS-related topics and symptoms.

Why aren’t other large MS or neurological events and conventions including these MS experts for their input, participation, and guidance? Neurologists are in the forefront as the primary presenters and Q/A panels. Sure, all these events will have a person with MS tell a personal, general story about their MS experience, but that is about as far as it goes. Why isn’t there a group of MS experts on a Q/A panel for the audience? Or a table set up with actual MS peer counselors in an area where MS patients can speak face-to-face with someone for guidance? Why aren’t they used as credible spokespersons?

Neurologists may be pros on MS methodology and gathering research, and but WE are the pros on actual MS experience. I bet each of us bloggers have spoken to thousands of people that would supersede the number of patients a neurologist would have as MS patients.

Personally, I would go toe-to-toe with ANY neurologist on ANY MS-related subject or issue. I cringe when I see or hear “consult with your doctor about…” So many MS patients have a poor relationship with their neurologists. Patients don’t know everything, but neither do the neurologists, or researchers. Why isn’t there collaboration?

Last month, there was an event in Rome called the International Multiple Sclerosis Conference. They stated:

“Unlike many other events focused on novel MS treatments, the conference in Rome, entitled “Raising standards: The voice of people with MS,” will be focused on MS patients and how their expertise can help treat the disease. “This event is different,” explained Kaz Aston in a press release. “Because it’s all about the patient, and about the ‘expert patient” as a concept — recognizing that MS patients have a lot to bring to the table.”

Sure, the MS community is interested in learning about the latest research to stop, prevent, rehabilitate, and cure MS. But there is a whole lot more than research and drugs that the MS patient needs in order to manage their MS–which includes a broad spectrum of things both inside and outside the MS community.

Truthfully, I have to crack up when we are told research studies are needed and are now going on for the impact of things like stress, fitness, and massage on MS. Are you kidding me?

When will we MSers be included, listened to, and taken seriously?

www.DebbieMS.com
Author/MS Counselor/Living with MS

* Image courtesy of Stuart Miles at FreeDigitalPhotos.net

What MSers Really Need from Others

Posted on by

“The chronically ill, too.”

Even though this post was written for a MS Blog, the following list can apply to supporters of patients who are chronically ill. As an MS patient myself who was trained as a MS peer counselor thirty years ago, I found myself talking with and listening to patients who were chronically ill with something else.

This list is for family, friends, co-workers, health care professionals…i.e. the people we associate with in our lives. While it seems to be simple and just common sense, it is amazing how many folks say the wrong things or don’t even know what to say.*

1. Empathy vs. Sympathy
Most MSers don’t want you to feel sorry for them. They want you to try and understand MS and their symptoms/problems. Visualize putting yourselves in their shoes.

2. Listening vs. Talking
Sometimes MSers like to talk about MS and sometimes they do not. If they wish not to talk or get emotional, do not take it personally or compare them to others. More often than not, they need others to listen to them.

3. Inspiration vs. Reality
Inspiration is vital and wanted. However, there are times when MSers are so sick or fatigued, they don’t want cheerleading, humor, or advice. Give hugs and be sensitive to their feelings.

4. Knowledge and Support
The more accurate knowledge that is obtained from reliable sources, the less fear there will be. The more support that a MSer has from whom they interact with, the easier it will be for them to manage their MS, lives, and adjustments. What kind of support? Just ask the patient, or offer to do something to make their life easier (like make a meal, watch kids, do laundry…).

*Here is a link to view my background/credentials http://debbiems.com/about-debbie_269.html

www.Debbiems.com
Author/MS Counselor/Living with MS

MS and Your Relationships

Posted on by

“Strategies & Tips”

On February 15th, I facilitated a workshop entitled “MS and Your Relationships” in Phoenix. The workshop was part of Genzyme’s One Day for Every Day Event. This is a summary of that workshop, as I want to share this information with a larger audience.

I began by telling the attendees that a one-hour timeframe was not enough for this big, important subject. It’s bad enough that everything about MS is complex, from the diagnosis to the symptoms; after all, the nervous system is involved. But people are highly complex too because of their thoughts and emotions. So when you put the two subjects together—yikes!!

Just about everyone in the room with MS was there with someone else—either a spouse, sibling or friend. This was good because everyone living with the MSer is also living with MS. And that goes beyond the immediate family.

My presentation was to discuss communication strategies and tips to create a foundation of open and honest communication. I adjusted this goal to first, make the group interactive, and second, address two other critical aspects of relationships: support and knowledge.

• Support and knowledge reduce the fear one has with an MS diagnosis. The more you have of both, the better chance you have to survive this disease. One has to be careful though where one gets the knowledge since because of social media, there is much information available today that can be overwhelming and inaccurate.

• Since MS is still a lifetime illness, knowledge and support will change many times as time marches on due to disease progression and lifetime changes that will occur.

• Everyone in the room needs it; everyone outside the room needs it. What is NOT a strategy? Doing nothing—doing no communicating, obtaining no knowledge, getting no support. Anyone dealing with MS will not survive it if none of these are done.

Who are the relationships the person with MS interacts with? What do we say to whom? Who do need support from?

• Family: partners, children, parents, siblings (Needs communication at appropriate level; “show & tell” is a great game to play to help a non-MSer understand invisible symptoms. For example, have men walk in spike heels to understand balance issues; put 10-lb, weights around ankles to experience walking heaviness and fatigue; put a knit glove on a person and have them find objects in a purse like tissue, quarters, etc.)

• Friends (How much you share depends on depth/closeness of friends.)

• Workplace people: boss, colleagues, human resources (very subjective area—many reasons to disclose or not to disclose)

What groups were missing from the power point slide in the presentation that are just as important?

• Peers (They are a lifeline for both MSers and non-MSers—someone you can easily relate to because they are “in your shoes.”)

• Healthcare team (Make sure all of them understand and have experience with persons with MS!  For example, a physical therapist needs to understand the effects of heat and fatigue of MS. Also, you need to like and trust your neurologist; if you don’t, fire him/her and get another one, as this is a lifetime, crucial relationship.)

• Strangers (I have had to ask strangers for help many times since I had mobility problems since my early years. For example, helping me reach something in a grocery store, or assisting me in a dressing room. People in general–in all of the above groups too–like and want to help. It makes them feel good, and they hate to see someone struggle. Personally, I will let people help even if I don’t necessarily need it!)

• Pets (Wow—they understand/comfort us the most, don’t they?!)

I had all eyes on me from my audience, and many nods or claps. It was interesting to see hands go up when I asked how many felt they needed better support in various groups or who didn’t like their neurologist.

Talk is good, even if it doesn’t solve anything. It feels good to get things off our chest. I have an old MS buddy who called me recently and asked, “Can you talk to me? Is this a good time?” But if there is someone like a stranger or a fellow employee who asks you something that you don’t want to talk about, just simply say: “It’s a long story…”

Venting is also good, as long as it doesn’t hurt anyone. For example, when I get stressed out or frustrated, I cry or call a close friend of mine who is a peer. My husband on the other hand will yell or throw things in an un-harmful way. We go our separate ways to vent because I don’t like his yelling, and he doesn’t like my crying. When the steam is released from the pressure cooker, everything calms down. Holding things inside without a release is dangerously stressful, and we all know how stress negatively affects MS.

What if the people we need to talk with will not communicate or talk? Then it is essential to find someone who will…

In the beginning of my MS, my family was in denial. I went straight to the local chapter of the National MS Society to get literature and meet others who had MS. Later, when both my husband and my mother wouldn’t talk to me about my MS, I went to a therapist who understood MS to help myself deal with these two close people in my life. Years later, I went to a therapist again when deciding whether to give up my career. My MS was aggressive and it was progressing rapidly.

There’s no question that people living with a person with a chronic illness such as MS, is also living with it too. While open communication is essential for all involved, it unfortunately doesn’t always happen effectively without having an “outside” person/s involved. Perceptions are different, emotions are involved, and more often than not, negative consequences result. Ideally, partner/family counseling is essential in most cases.

Realistically, there are obstacles with professional counseling. The first is that many people–whether they have the illness or not–do not want to go to counseling. This was the case in my own personal situation and though I pleaded with my family to go, it didn’t happen. So I went to counseling on my own and fortunately, it helped me tremendously to figure out how to handle my family relationships and how and where I could get support that I needed. Secondly, I believe it is imperative that a good, reputable therapist who UNDERSTANDS MS is found. MS is complicated in many ways, is generally progressive, and currently lasts a lifetime. Finally, many people unfortunately cannot afford therapy; however, many county health departments have resources available for financially strapped people.

So what are strategies to foster healthy communication?

• Should you always be honest about your feelings? When I asked everyone in the room if they were ever dishonest about their feelings, every single hand went up! It obviously is a judgment call, depending upon the people involved, and their personalities. With your healthcare team, you need to be honest. With everyone else, the group agreed that you can’t be a constant complainer or whiner. Be selective with whom you are comfortable with and trust to discuss your concerns, problems, fears, etc.

• Keep a journal about important things that need to be communicated, whether it is info to discuss with your doctor, modifications that need to be made at work, or just notes about what you want to talk about.

• Pick an appropriate time and place for a discussion. Trying to talk when one is tired, hungry, or stressed out will be a disaster. Try to be in a relaxed frame of mind, when interruptions will not occur.

• Be respectful of what the other person is saying—this is a two-way conversation. Actively listen to each other, and avoid accusations, finger pointing, name calling, yelling, etc. How and what we say matters, as well as the tone that we use. Avoid negativity.

• Two-thirds of communication occurs through body language. Your posture, facial expressions, eye contact, etc. speaks volumes. When someone rolls their eyes or points a finger at you, what does that indicate?

• Ask for help and ask to help. People want to help, and people need help. Be explicit or give examples when talking about this to help clarify your statements. Ask questions and share perspectives. Try to put yourself in the other person’s shoes. And remember—none of us are mind readers. Not only are you communicating here, you are educating.

• Everyone should show and express their gratitude often. Give complements.

• A hug, kiss or smile goes a long way.

• From experience, I believe that we MSers set the tone and comfort level. If we are relaxed and open, the other person will be too.

• My personal advice to all: show and give empathy, not sympathy.

• Use humor when appropriate. Many times, the subject being discussed can be very sensitive and not funny at all. Or, it is hard to be humorous when you are not feeling well.

• Avoid arguing and be patient. If an argument develops or patience is lost, quit the discussion and regroup later.

• Always try. If it doesn’t work, try something else.

Well we ran over our one-hour timeframe, which was no surprise. But it was a start, and I always say that “Getting started with anything is the hard part.” Now everyone has a framework or some ground rules they can try to use to enhance their communication, support and knowledge.

At the conclusion, I gave everyone a copy of a previous blog that I had written entitled “MSers and Their Loved Ones.”

www.DebbieMS.com
Author, MS Counselor/Living with MS

Please visit my website for more articles, videos, my book, MS information and resources.