Hi Folks!
What is the sign all about...you ask? And my reply...Symptom Management. Yes, you can manage your ms symptoms, with the right knowledge of what your symptoms are, through discussion with your physician you will be able to determine which are really ms issues and which are not. Once this is clear, the next step is how to address the issue (s).

We are all on this ms journey however, we all face different aspects of the journey, and this is especially true when it concerns symptoms. For some cognition may be the worse of the lot, and for others fatigue or mobility. As for myself "Cognition," is the  BEAR that I wrestle with daily, poor memory,a result of poor  retention and recall, and let us not forget slow processing of information. All of which seem to be one great big circle of frustration-process it so slow that I forgot what I was trying not to forget. If you cannot retain it how can you recall it? Crazy or what?

 So what do we do? I have set up lots of systems in hopes of helping myself find lost thoughts, some work for awhile,and some never worked at all. I'll share a few with you: sticky notes, plastered everywhere,on mirrors, and around my computer screen these are good if you are near them when you need to retrieve a lost thought, or until the stickiness dries up and they keep falling down, you get frustrated and trash them.

 How about the voice activated tape recorder? Good idea heh? NOT! I kept forgetting what I did with the darn thing and of course unlike the lamps that you can clap on and off, or my being able to call it from my cell phone, as I sometimes have to do to find my home phone, I had to throw out that idea. Geeze...back to the drawing board again. I'll continue to go back and until I find a solution that I can remember? The only good solution is the one you can remember right? Lol.

The bottom line is this, we have to regroup and try again, and sometimes again and again, until we succeed. I have learned that multi-tasking is a sure way of my retention and recall to fail. I find that I remember best when I focus on one thing at a time, not to say that I don't still have issues because I do, but they are fewer and as a consequence they are less frustrating.

 A really big thing for me is that I've learned that my attitude as I go through those less than favorable times has a lot to do with how frustrated I become. The frustration and stress from  beating up on myself will not change the outcome. I shake it off and then I begin to re-strategize about what I can do differently. I simply know that I can and will find the perfect workable solution for me.

My next try will be some type of assistive technology, there is software out there that can be added to a smartphone that will not only ring or ding, but some will even talk to you, and remind you of what you have on your "To Do," list. However, finding a program that is not cost prohibitive can be a problem in and of itself. A smart phone is not in every budget and then you will still need to purchase the software.

The list of issues is a long one, and if any of you have tips that work for you and would care to share please do. I invite and encourage you to share your thoughts on any part of your journey, for what may very well seem small and/or insignificant to you could be a blessing to someone else.

I'll leave you with this quote:
If you change the way you look at things, the things you look at will change.
                Wayne Dyer

Shirley

MS'ers Helping Each Other

Hi Everyone
I have been away from my desk for awhile, not by choice but away never the less. I would like to share with you some of the highlights of a wonderful MS Group Leaders conference that I attended November 2-3, in Canton Ohio. There were twelve of us from various states, all group leaders dedicated to helping support others with MS. Our groups are all under the umbrella of the Multiple Sclerosis Foundation (MSF).

We had a great group of people who not only meshed because of a common enemy (MS), but because of a determined desire to help others and in turn also help ourselves. We began with identifying what a support   was and our roles as leaders and co-leaders. Topics of dealing with challenging situations, becoming  emotionally involved,and keeping your meetings positive were some that were covered.

 During our discussions we discovered that though there were sometimes differences in our approaches the outcomes were quite similar. Proving once again that there is almost always more than one way to arrive at any given solution, that you might be seeking. We ended with sharing our personal views of the rewards of being a support group leader/co-leader.

The most precious and heartwarming outcome of the conference was not only the new friendships formed, but also the sense of family that was forged between us in just the small amount of time that we shared. Our facilitator Helen Mangan was excellent in guiding the group discussion, offering pertinent insight on the life and times of a support group leader. Thanks Helen for all that you do to help your group leaders.
I'll say goodnight and leave you with a quote:

"We act as though comfort and luxury were the
    chief requirements of life, when all that that
we need to make us happy is something to be
            enthusiastic about".
Albert Einstein, Scientist and Philosopher

Be happy my friends, take control and live your best life today! LIFE IS THE GREATEST ADVENTURE!

Shirley

 

Fall is upon us, I hope that all of you are well and thriving. Today, as is most of my days a good day whether it presents itself as good, bad or ugly. I choose to proclaim it as good, inspite of that annoying boogieman called  ms.

Today I will share a special writing of  mine that explains why I  decided to see everyday as a goodday no matter what it might look or feel like. This is how I maintain control of my life, and how I choose to experience life as I make this journey.

                                               THE BOOGIEMAN TREE
I remember the days of my youth, when I climbed trees, as nimble as a cat.
I purposely looked for the tallest, and the most impossible one to climb.

I never considered defeat; I looked forward to the taste of victory. I leaped from branch to branch, with no thought of how high or how dangerous it was.

That was in the physical...those days are long gone. But, I am now presented with the biggest tree of my life, "The Boogieman Tree Called MS."

I did not ask for a tree to climb...but here it is. So with the dawning of each new day, I mentally and spititurally gird myself with the attitude that my boogieman, ain't so bad he's just tall that's all.

And whatever branch comes up, the fatigue branch, the sluggish mind branch, the neuropathy branch, the emotional branch, the I hate taking these shots branch. As in the days of my youth, I go from branch to branch, steadily climbing.

No, I no longer leap from branch to branch, but I maintain a steady climb. I refuse to allow this boogieman to defeat me, define me, or steal my joy. Each day whatever comes, I continue to climb.

This tree may be the biggest challenge of my life, not in the physical, you see, but in the mental.
"But in the Mental I Rule." The boogieman tree ain't so scary or bad, it's just tall that's all.

Whatever the branches on your MS Boogieman Tree, remember...he ain't so bad, he's just tall that's all. Then begin to mentally climb. Some days the branches are harder to reach, but not unreachable. Expect "bark burns," grit your mental teeth and start climbing again.

I climb tired, I climb rested, I climb both in and out of pain, I climb happy or sad, for this is not a one time climb, or a one day climb, it is a... JOURNEY. Don't worry about the distance to the top of the tree, just continue to climb.

Then and only then will you win out over the "MS BOOGIEMAN TREE," every branch that you climb, count them at the end of the day. They are your VICTORIES...he ain't so bad , he's just tall that's all.
                                             KEEP CLIMBING MY FRIENDS
                                 Written by Shirley...Inspired by the Holy Spirit  

What is the name of your boogieman tree? I encourage you to give no quarter to any boogieman that you may be facing already, nor one that you may have face while journeying down the road called life.  
Shirley  
                 

THE DOG DAYS OF SUMMER

                                       



Hello Everyone
Summer came in with a sizzle and now that the "Dog Days of Summer," are upon us it appears to be going out the same way. I for one am glad, I am waiting with bated breathe for "FALL, " to finallly arrive. Next week September 12th our support group meetings will resume after the July and August break.

The group is open to all minorities not only African Americans. Our group is the only one in our fair city that is inclusive for all minorities and people of color.  And our goal is providing support for all minorities in their journeys with MS.having and maintaining a good support system along with others who are dealing with many of the same issues as you are. It is sometimes difficult for some of our family and friends, to really understand what we go through on a daily basis.

It is not a question necessarily of loving us, but one of trying to understand the differences in some of the normal everday health issues, for instance the fatigue that we are dealing with, it is not just a simple matter of getting more rest, which normal fatigue responds to. It is not a simple matter of "Everyone is forgetful sometime," or girl I know just what you mean, I can't seem to remember anything either, or you have to be more organized and you'll be able to keep up with things.

They love you and they mean well,even though you might have tried to explain the differences numerous times, we have to accept that they may never entirely understand, and we have to know that it is okay, some experiences have to be personally dealt with. And if we're honest we have to admit that we also had to come to a place of understanding ourselves, that fatigue is not just fatigue, or memory issues just normal memory issues,and the list goes on.

In a support group you are with others who understand you because they are going through the some of the same things that you are. A good group is not a pity party, where you meet to wallow in gloom and doom, it is a gathering of kindred spirits that are shareing the ups and downs, and the laughter of Journeying through life with MS. People who build each other up with encouragement in the really,really tough moments. It is a time of sharing tips that has made some particular problem easier to accomplish, how to's of making changes where I can, and learning how to adapt and/or altermately accept some things when there are no changes to be made.

In a good support group you can collectively as a group share your triumphs and spit in the eye of MS, and proclaim, that we will maintain all the control that we can, we will not allow our MS to take control of our lives. We will fight daily to experience more successes than failures. We fight and never surrender whether it is a goodday, a bad day,or a just plain ugly day. This is not a one day journey, it is a life long journey.
Never, say I give up, join me in deciding that since it is "My MS, then I will live it "My Way.

I'll leave you with these words from a card that a friend posted on her FB page:
                      I Choose...
            to live by choice, not by chance;
               to make changes, not excuses;
                    to be useful, not used;
                       to excel, not compete.

                      I Choose...
            self-esteem, not self pity;
                 I choose to listen to my
                         inner voice,
                   not the randum opinions of other.
                             Shirley Johnson

Shirley out!

Hello Everyone
I'm baaaackkkkkkk. I took some time off and rested when I returned from a trip home to Miss; visiting family. It was even hotter down there, but I enjoyed my stay as always, and the secret is... mom and dad have air, air a wonderful thing is it not ?

I also attended the Joyce Meyer conference in Auburn Hills Michigan, the conference was awesom!! If you enjoy her on television you would have been truly blessed to be there. I am now home and resting up getting ready for my support group meeting to start again for the fall, the group decision was to suspend meetings for July and August the two hottest months of the summer.

The "Dog Days," of summer are upon us, and here in Ohio it is still pipeing hot for folks like us. Someone is forever telling me how great the change in temperature is going to be next week, in the 80's. Yuck is what I say, give me the 70-75 and then we can talk, lol.

Take Control of your MS, and never allow it to take control of your life. It's your MS, live it your way. I'll leave you with and African American proverb:
                         "God makes three requests of His children:
              Do the best you can, where you are, with what you have, now."

Have a great day my friends, stay strong, keep a song in your heart, and a belly laugh always ready to help you over come your worst MS days.

Shirley
                                          

JUST CALL ME CRISPY!

Whew!!
It is a very, very hot summer!! Under statement huh? As for myself going out has been a matter of running the heat wave gauntlet. I get out and go only where I absolutely must go, and then make a mad dash back to the house and the blessed A/C. My ice packs have been a great help, but not as much this summer with the extremely high temperatures that we have been getting.

I don't know about any of you but the temperatures that we are facing now, makes processing information even slower than normal, and also my fatigue goes to another level. I also find that I am more easily irritated,
and.... therefore, I am not my normal charming and delightful self, lol. We have one more month of sizzling heat, so buck up and let's press on. Fall is just around the corner, winter will follow and we will once again be wishing and hoping for a early thaw, waiting with bated breath for summer's arrival again. What a vicious circle, but hey, that's what keeps life interesting.

I wonder, what many of you are doing to survive this stifling heat? How are you managing your MS symptoms, are they more intense because of the heat? Let me hear from you, as I am very interested in hearing about how you are coping and/or any coping tips you might have to pass along.

We will talk about Self-management..taking charge of your MS in the next post. Until then hang tough, find ways to cope with your issues, you may even have to do some adapting, but never,allow your MS to take over and lessen the quality of your life. In dealing with this disease I have found that  strategizing has become an art form, I try to think ahead and develope a plan of action to deal with possible senarios based on, where I am in my journey. Well more on that later, stay well keep a song in your hearts and a laugh in your belly.

Shirley

Hello, my fellow MSers
I have gone through a second melt down. Saturday was a pretty hot day for those of us who are heat sensitive. I attended a video conference at the Fairfield Hotel here in Toledo, the topic being MS of course and the new drug therapy Gilenya, in pill form to be taken for R/R MS in adults. It has a lot of side affects and not very nice ones: slow heart rate that should return to normal in about 2 months, it may also cause increased risks of serious infections.
It lowers the number of white blood cells (lymphocytes) in your blood;
fever, tiredness, body aches, chills, nausea, or vomiting. Yech!! As for myself I will stick to my betaseron and the much hated shots. Yet, the thought of only having to pop a pill each day is inticing. Have any of you opted for Gilenya? or may be thinking about trying it? Let me know your thoughts and or how you are doing with it if you have started taking it.

Well my friends try to stay cool, limit your time in the sun.It has taken me several days to get back to feeling normal...normal? whatever that means to person with MS. Whenever, I venture out on hot days I am wearing my cooling vest with ice packs in the pockets, the packs are good for approxmately 4 hours, then if you still going to be out you will need to switch the melted ones with fresh frozen ones. The most important step of all in this process is to remember to put the ice packs in the freezer the night before. I have neglected this step a time or two.

I am providing a link to my facebook page for my support group, My Brother's Keeper African American MS Support group, check it out this support is for all people of color, not just African Americans. People of color have some very serious differences in the way MS affects us, the disease course is much more severe and progression more rapid. You will find an article there that you can read on the present research, on this topic. http://www.facebook.com/MyBrothersKeeperAfricanAmericanMsSupportGroup/photos.

Until we meet again be well and take control of your MS, never allow MS to control you or determine the quality of life that you will enjoy.

Shirley