My buddy Cathy has an online MS store, www.themsshoppe.com, which provides a multitude of cooling items, assistive equipment, books, T-shirts, jewelry, and other novelty items. I love this online store and I’ve bought one of her very popular MS T-shirts myself. I admire Cathy and her tenacity, and I’ve found myself reading her own MS story at Navigating the Journey of MS. Hope you enjoy this shop as much as I do and can utilize the goods that make life with MS a little easier and a bit more fun.

One of my biggest obstacles and annoyances is grocery shopping. I have to admit that when it’s a small order I don’t mind trekking to the A & P for some things, but when I have to do a big run I get very stressed. I don’t enjoy grocery shopping to begin with: all the decisions, navigating the crowded parking lot (I don’t yet have a handicapped parking placard, but it’s getting very tempting..), navigating the crowds in the store, trekking everywhere for items– oh my goodness! Just talking about all of it is making me tired! Worst is the lugging of heavy bags from the cart into the car and then into the house. I HATE it. I’ve tried to accomplish this during bad stretches with a cane in hand. UGH. I can only imagine using one of the store’s scooters with the ridiculously small basket attached to the front. Nobody moves for me now as I lurch through the aisles, often trying to keep my balance and not crash into someone like what would appear be a drunken sailor. LOL. I can only imagine the added annoyance of a scooter. So the discovery of grocery store home delivery systems has been a sanity-saver for larger orders.

I’ve been utilizing Peapod online shopping as of late. It delivers from Stop n’ Shop, which is one of my local stores. The delivery fees are reasonable: $9.95 for a $60+ order and $6.95 for a $100+ order. The website is easy to navigate and weekly specials are listed. I can also create a bare bones list of regular items that I can continually refer back to in order to save time. Other grocery delivery programs abound. Below is a small list of regional chains (the U.S.) and their programs. Some provide online shopping and home delivery while others allow you to pick up your online order from the store. For your own area of the world, consider calling or looking up local and regional stores online and learning about their online shopping / delivery programs. I find myself much more at ease because of this fantastic concept:

Peadpod
Shoprite
AUL Superstore
Schwan’s
Safeway
Homeland Delivery
Giant Food Stores
Acme Food Stores

MyMSMyWay.com is a fantastic website that thoroughly examines helpful adaptive technology specifically for MSers. It is also run by people with MS who KNOW first-hand about impairments.

2. Another valuable internet game that can stretch Msers’ mental skills is oddly located on Facebook. This interactive community has many games and one in particular proves to be quite challenging and speed-testing. “Who Has the Biggest Brain” can be accessed through a Facebook account and it tests analytical, calculative, memorizational, and visual processing skills. I found this game more difficult— it involves complex calculations and memorizations— but I enjoyed the pace and found myself going back to increase my score. The downshot with this game is that there are no easy screen alterations for better clarity: the game is intended for the general population.

I have to tell you that although I’m currently doing physically well (just a short-lived issue with a bladder infection in June), I get VERY stymied with how to occupy my time. It’s a catch-22: I have now down-shifted in order to feel better, but I find myself grasping for things to fill up my time. My busier contemporaries would probably chuckle over this: imagine having TOO much time! But as someone living with multiple sclerosis who is now on Social Security Disability Insurance, I am constantly challenged with finding the right balance of activities to feel worthwhile but not energy-sapped. And being happily occupied is so very important to a person’s overall mental AND physical health.

I have an ongoing relationship with a fantastic social worker. She keeps me on the path of sanity (for the most part) and she guides me with issues that are too overwhelming for me to tackle on my own. One of the greatest things she recently introduced me to was a day planner! I know this may sound crazy– I DO know what day planners are used for— but I had never considered using one, even while out in the workforce. I always assumed they were for “executive types”: business people, accountants, entrepreneurs, doctors, and so on. Not former health field workers and especially not for a stay-at-home, marginally-employed housewife.

Boy was I OFF the mark!

I was complaining one day in therapy to Nina, my copilot, about my lack of direction and my big problem with PROCRASTINATION. I have a tendency to shut down and dally when I have too much time. I need the adreneline of crunch time and deadlines to sometimes get my butt in gear. I basically work best under pressure. With no immediate pressure I find myself falling off the straight-and-narrow path (more times than I am comfortable admitting.) This is when Nina, brillant and practical social worker that she is, went to a bookshelf and produced for me a dollar store day planner. She even told me how she bought up several of them for fifty cents each, since we were well into April by this point. She also told me she had several other patients who had the same problem– for varying reasons— and found themselves without a map. Here are some tips she shared with me and I find them completely invaluable as I piece together my world during the Monday – Friday, 9 – 5 shift:

Write down ALL things you would like to accomplish

I find doing the laundry and picking up dry cleaning to be very mundane, housewife “chores.” Doesn’t matter. Listing these things ensures that even ordinary, boring tasks will get done and it establishes a sense of achievement over the small things (and isn’t divinity often found in the smallest details?) This tip increased my own self-worth and made me realize that I DO accomplish a great deal each day.

Add bigger things that you hope to accomplish

These can be things you would like to get done, such as signing up for a new class or making a lunch date with a friend. They are bits of inspiration among the daily grind. They are not basic tasks but things you would like to do.

Add loftier accomplishments in the margins, giving wiggle room for achievement

Bigger goals can be written down at the top of the month in which you’d like to achieve them. They have more flexible time frames. Glancing at them gives a general idea of the goal, with an open-ended commitment. Some things need more time to develop and be pursued.

Write plans in PENCIL

This isn’t actually cheating. It merely gives some margin for error as life often has its own plans. This also keeps a person from beating himself or herself up by having a bunch of cross-outs or unmet plans. However, erase in moderation! This also opens space for new, spur-of-the-moment plans that would not otherwise fit.

Check off tasks accomplished

Silly as this might sound, checking off items gives the planner a sense of accomplishment and some control over life’s daily duties. Looking back over the month, it also tracks how successful the planner was at tackling things.

Don’t “overbook”

Keep daily tasks at a moderate level. Over-booking can lead to stress and the ditching of plans. Find a level that is manageable and not overwhelming. Lots of non-immediate tasks can be spread out over the course of a week.

Be accountable to SOMEONE

It’s fine to make plans and try to carry them out, but if no one is keeping track, it’s easy to get complacent and procrastinate or completely shun tasks. Who’s watching anyway? Well, have someone in your life ( a therapist, a spouse, a mate, a friend ) check your monthly accomplishments. If you feel you must “turn in” your planner, like it’s a form of homework, it’s less likely that you will avoid your tasks and more likely that you will stick to your plans. As time goes on, you may not need to show your planner to anyone as you become accountable to your new, diligent self.

Reward yourself for completing tasks

Adults need gold stars too! It’s important to acknowledge keeping on track and accomplishing daily tasks. Find an incentive– a new book, a movie, a new shirt, and so on— that motivates success. You don’t have to accomplish everything on your weekly schedule (no one’s perfect), but checking off a majority of items deserves a little reward. You did it……!

It’s now the height of summer in the northern hemisphere and as people celebrate this 4th of July weekend, thoughts turn to keeping comfortable and cool. For people with MS, it’s always a good idea to avoid overheating to keep the nerves conducting as well as possible, but staying indoors on a sunny day can be a big drag. A great way to keep body temperatures down is to use portable cooling devices such as vests, neck wraps, and wrist wraps, depending on your needs. Cathy, at Navigating the Journey of MS, has an online multiple sclerosis store, The MS Shoppe, which sells a variety of these cooling devices. She opened this store with her husband to provide consumers with quality MS merchandise, including MS books, mobility devices, funny t-shirts, nightlights, and other relative multiple sclerosis items.

I recently attended a local Multiple Sclerosis Society function that included vendors promoting adaptive equipment, support organizations, and self-help books. My husband and I lingered at one particular table where a representative was demonstrating adaptive clothing. We watched as he showed onlookers the versatility of his Velcro shirts and pants. “Quick Change Clothing”, he said, “makes it easy for someone with MS or their caretaker to put on and take off clothing.”

This rep went on to explain to us that the company originally tried to market the clothing— which uses Velcro closures on the seams for easy on and off— to professional athletes, but since major athletic outfitters were their major competitors, the company decided to fill the need for people with physical impairments who could benefit from the clothing.

To learn more about Quick Change Clothing, visit the website www.quickchange123.com or phone 212-362-0393.

I’ve had a couple of recent emails that cause me to now publicly address some important issues. For privacy reasons, only the writers’ initials have been used. Thank you both for emailing me and posing such valid questions:

Hello Jen:

I just visited your website for the first time. I’ve been fairly recently diagnosed w/ MS and am having a hard time dealing with it, but trying to find others and learn of their coping skills. You’ve had it for 11 years, how have you managed to stay so active? Are there local support groups? I just turned 55 last month (was 54 when diagnosed), I believe it is relapsing – remitting (haven’t been able to get a direct answer from my neurologist), and I am working full-time.

Look forward to hearing from you.

Thank you for your time.

~T

This one’s tough. I cope according to the disease pattern. I also (allegedly) have RRMS, and so I get periods of respite. This is not a given for everyone with multiple sclerosis. My MS has calmed quite a bit in the past three years. I’m currently taking a disease-modifying medication (one of the interferons), and it has been working fantastically for me. I have gone from having yearly severe relapses to recently having a “watered-down” (although still frightening) relapse every two years. In between relapses things level off. I experienced severe pain in the past when my MS worsened a few years ago (as I was beginning the injectables), but for reasons unknown—which is a big factor in MS— I have experienced very little or mild pain since. More problems actually with mild muscle spasms, but these are even fairly tolerable. Many people with MS do not get this respite (from physical and/or emotional pain.) This for me is a privilege and not a given.

As you can see, I’m extremely fortunate and this respite gives me the ability to cope. I didn’t cope well at all when I was experiencing the severe relapses and the severe pain. This is when I began seeking the help of a therapist, and I began taking an antidepressant. Both are continual and my lifeline to the “normal world.” I am also on Social Security Disability Insurance now, so my financial/work problems have also evened out. My husband and I are still living paycheck to paycheck, but we are now not in the hole every single month. Just broke. LOL……All of this contributes to my coping and to my ability to stay active: I am currently doing well and several burdens have been lifted. But this can all change in a heartbeat. So I’m not taking any of this for granted.

For day-to-day coping, you can try contacting your local MS Society chapter (if you live in the U.S.), or your own multiple sclerosis organization in your area of the world. Such in-person support groups exist and these organizations can direct you in your local search. Another great resource for support is your local hospital. My own local system posts support group meetings in their monthly bulletins (and a monthly MS support group is listed.) Call and query about such meetings if you don’t get regular bulletins. An online resource you might want to check out is the Carnival of MS Bloggers, a large consortium of MS patients who come together and share MS experiences/writings. Lots of blog links and stories, as well as objective answers and tips. There is also a chat room that I attend on a regular basis (usually two Friday nights a month) that has been great for really bonding with other MSers. It’s for anyone who would like to connect (not just those from Delaware.) I highly recommend it.

Hope this helps, T, and thank you for reading and posing these questions.

Hi:

i was dx in 2006 and now have progressive relapes- my suggestion is this for you to think about-

I would love it if you had a chat room for people with ms besides one other i know of . One where most people are nice and i have been to one that is nice but wish there were more chatrooms on line for people with ms so that when we hurt day time, night time, evenings we could have someone to talk to that can helps us thru the hard times. the other chatroom we can use caps in there and not yelling for folks like me with bad eyesite. thanks for your time and im glad i found your website

~P

Oh, I’m working on it! I have suggested such an idea recently to the National MS Society. I’m waiting for a response. This website is currently trying to morph itself into a non-profit entity. I’ve been swamped with school work but now I’m free over the summer, so my priority will again be searching for ways to make this website bigger, better, more accommodating, and maybe a source for contributions to the NMSS, a huge contributor to MS research. In the meantime, I believe there are continual chats at this location: www.msworld.org. These are specifically for MSers. If you haven’t yet checked this out, I’d suggest you do. As I also mentioned above, there is a twice-monthly discussion at Joan’s chat room (A Short in the Cord), where MSers gather and kvetch–or just crack each other up—and bond. I love it and have participated now for several months. And we are highly accepting of visual impairments as we all know that it often comes with the MS terrain.

I hope that you try the MS World chats. Let me know how it goes. And I really hope that you’ll join us at Joan’s chat room because we all have bonded so well and everyone looks forward to each session.

Thank you too, P, for reading and for sending in this suggestion.

A great multiple sclerosis resource has been around since 1970: the Multiple Sclerosis Association of America (MSAA.) Headquartered in Cherry Hill, New Jersey, the association has various regional offices throughout the United States and its main functions are to inform, empower, and assist MS patients and their families/friends. The following are some of the MSAA’s main services:

Programs and Services:

This is a link to such services as a toll-free telephone helpline, reassurance calls, a lending library, information about support groups, events and classes, an MRI assistance fund, information about barrier-free housing, an equipment (including cooling devices) lending service, and program applications.

News Center:

Access the latest multiple sclerosis information here. Learn more about the MSAA, find out about current research, MS-related organizations, frequently asked questions (FAQ’s), and access the MSAA’s news archive.

MSAA Publications:

The Multiple Sclerosis Association of America has a quarterly, free publication: The Motivator. It also has various, free booklets and brochures that cover such topics as depression, complementary and alternative medicines, wellness tips, cooling devices, the MRI assistance program, and MSAA’s services and programs.

Life Lessons: MSAA’s Life Coaching Blog:

This is a fairly new component to the MSAA’s website. A group therapist and life coach provides life coaching sessions (via telephone) and she writes about helpful tips and tricks to live fully and realistically with multiple sclerosis.

Regional Offices:

Contact an MSAA regional branch near you.

My name is Ellen Kampel – I work for Microsoft and am a person living with multiple sclerosis (MS). I am reaching out to you on behalf of a great program in which I’m involved: The MS Technology Collaborative. The Collaborative is a partnership between the National MS Society, Microsoft and Bayer HealthCare Pharmaceuticals, dedicated to connecting people living with MS to technologies that can help them overcome MS-related challenges and live better.

The goal of the Collaborative is to provide technology solutions for people living with MS, many of which are affordable or free. Our Web site, www.MyMSMyWay.com, offers an online interactive tool called “Snapshot” that prompts users to answer a series of questions, after which they receive a customized report with technology solutions specific to each person and his or her particular challenges. We also offer technology tips submitted by members of the MS community, a monthly column that I write with a leading accessible technology expert, and information on the types of technology available.

Lastly, I wanted to share with you a bit of a preview about our newest and most exciting initiative – we’re in the process of building a free online game that addresses the cognitive challenges of people living with MS. The game will provide cognitive exercises that target some of the main cognitive challenges faced by the MS community. It’s being developed in consultation with individuals living with MS as well as medical experts who specialize in researching and treating this condition.

With so many people finding strength and courage through your blog, I thought that both you and your readers might be interested in the resources available at MyMSMyWay.com.

I’d also like to invite you to be one of the first to preview our game this spring. Do you think that you’d be interested in reviewing the game prior to its official launch and providing your feedback? If so, please let me know. I’d love to have you involved in our efforts.

Thanks for your time, and I look forward to hearing from you soon.

Best,
Ellen Kampel

Keeping an MS medical journal is easy. Here’s what I find helpful:

Narrow a Medical Journal Down to One Topic

If you have more than one ailment— many of us do— then separate the problems into different journals within a notebook. Keep MS information in one area and (for example) low blood sugar, or hypoglycemia, in another section. Sometimes it’s difficult to tell where symptoms are coming from (particularly in the case of multiple autoimmune diseases) but if the illnesses are unrelated try to keep them unrelated in the journal to focus on what is precisely going on with each illness.

Be as Specific as Possible

I look back at my medical journal and my memory is jogged: I had this episode of vertigo at this point in time, I took this medication, my neurologist said such-and-such, the vertigo tapered off at such-and-such time. I would never remember this on my own and I’m glad that I took such descriptive details. Referencing entries with specific dates, durations, performed tests, my feelings about the symptoms, what medications I took, whether said medications helped or did nothing, and my doctors’ opinions has helped me to keep a mental idea of my MS journey thus far. It’s still of course mysterious, but I feel a little more in control of what’s going on.

Regularly Update Your Status, Including the Good Times

Being well is a point of reference within the journal. It’s important to document this as part of the journey. Just checking in every few months keeps the journal updated and current.

Record Feelings about the Attacks and the Symptoms

I was able to see a pattern of anxiety and depression which I shared with my therapist because of my noted feelings within my medical journal. The psychological elements are definitely a part of the greater whole.

Remember to Bring the Medical Journal Along with You to Doctors’ Visits

This journal aids not only you but your treatment team in better knowing your disease history and present status. You can also immediately record what your doctors say, requesting proper spellings and exact information. Sometimes it all sounds like mumbo jumbo if you wait until you get home.

Stick to the Basics

I don’t know about you but I prefer to keep this sort of journal in a standard wide-ruled notebook. I don’t get fancy and I keep to the basics of my case. This isn’t my autobiography; it’s a book of facts I need to keep. A basic notebook works for me.