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

Hello fellow MS'ers
It is a beautiful day today, and I hope all of you are well and pressing forward.
From time to time I will be sharing with you various research information that I come across as it pertains to African Americans and other people of color. I am including in this post some excerpts from and article on this topic:
Ethnic Groups and MS Research

Source: Neurology. 2010 Jul 20; 75(3):217-23. & PMID: 20644149 (28/07/10)
MS develops when myelin, the insulating tissue around neurons in the brain, is attacked by the body's own immune system. "The findings show that ethnic differences in multiple sclerosis extend to the immune response system, which plays a central role in multiple sclerosis," Dr. John R. Rinker, from Washington University School of Medicine in St. Louis, said in a statement.

US Ethnic MS Study

A study, supported in part by the National MS Society, comparing the clinical characteristics of MS in African Americans and Caucasian Americans found significant differences between these two groups.
This study found that blacks with MS are more likely to experience a more aggressive course of disease, more likely to develop mobility impairments, and more likely to develop opticospinal MS and transverse myelitis.
While the disease is more likely to afflict Caucasians, it's showing up more and more in minorities. USC researchers hope discovering why minority cases are on the rise will eventually lead to a cure for everyone.
 African-Americans are more likely to have more destruction and a rapid escalation of symptoms. In Asians, the disease tends to affect the optical nerve and motor function.. And Latinos appear to experience a mix of the two.
Source: KABC Los Angeles 2010 KABC-TV/DT (14/05/10)
African/Americans with MS have more severe symptoms, decline faster than whites
Fewer African Americans than Caucasians develop multiple sclerosis (MS), statistics show, but their disease progresses more rapidly, and they don’t respond as to therapies, a study by neurology researchers at University at Buffalo.

Magnetic resonance images (MRI) of a cohort of 567 consecutive MS patients showed that blacks with MS had more damage to brain tissue and had less normal white and grey matter compared to whites with the disease. Results of the study appear in the Feb. 16 issue of the journal Neurology.
"Black patients showed more brain tissue damage and accumulated brain lesions faster than whites, along with rapid clinical deterioration," confirms Weinstock-Guttman. "The results provide further support that black patients experience a more severe disease, calling for individualised therapeutic interventions for this group of MS patients." 



"KNOWLEDGE IS POWER," the more knowledge  that we have about MS, the more control of our lives we will have. Know your enemy.

Laughter is the shock absorber that eases life.
             Gas station sign

 

Hello to all of you
I hope that you have been well since the last time that I wrote in this blog. I have had both good and bad days, however each is a blessed day. I am still fighting the good fight and on my own terms in every instant that I can.

Of  all the issues that MS lays on us just by it's self alone, it is doubly tasking when it makes us more susceptible to other conditions. I have had "Sleep Apnea," added to my list of "OMG," not this too. My sleep test was conclusive that sleep apnea is now one of my newest friends, lol. But hey, what are we to do but keep our chins up and deal with what ever comes, to allow ourselves to be overcome is not and option.

The MS walk was on Sunday April 15, I have been participating for the last two years and it has allowed me to push my limits. I like to challenge myself. No more 6 mile runs, but walking is still doable. I'd like to know how many of you participate in the MS walk? Walking, running, scooter, or wheelchair, it's all about living with MS our way, and using whatever means necessary to accomplish those things that we desire.

Until we meet again, take charge of your MS and never allow it to take charge of your life.
You can live life on your own terms...your MS, your way.

Shirley

Quote:
Positive thinking is how you think about a problem.
Enthusiasm is how you feel about a problem.
The two together determine what you do about a problem.
        Rita Pearl Johnson 

Welcome To The My MS My Way Blog!

I'm Shirley and I have MS. MS, multiple sclerosis. The chronic disease that affects the central nervous system (CNS) which consists of the brain, spinal cord, and the optic nerve. Many of the major parts, if you ask me.

I have relapsing and remitting MS (R/R). My journey began in 1996; however, Iater discovered that I'd had MS for approximately 10 years prior.

MS is found in all ethnicities and affects all genders and ages. Research shows that while Caucasians have the highest percentages of MS cases, African Americans are more severely impacted and less likely to respond to treatment.

In Asians, the disease tends to affect the optic nerve and motor functions. Latinos 

appear to experience a mix of the two.

The symptoms of MS are numerous. Many MS'ers experience fatigue, optic neuritis

(loss of sight, temporarily or permanently), neuropathy pain (constant tingling/pin prick

like pain in your feet and/or hands, spasicity (tight muscles), and depression just to 

name a few.

My MS My Way will focus on the sharing of information about MS, including practical

tips and ideas in dealing with symptoms, the sharing of resources, and providing a soft

landing place to share our journey with laughter and iron clad resolve. And just as 

important, how to not allow MS to shatter our lives. We have to make changes in the     

way that we do things and we can adapt to new ways of coping.

Is there some symptom(s) that you are not sure if it is a part of your MS? Ask your

doctor; he or she can be your best ally in your MS journey. Ask questions no matter

how unsure or silly you might feel.

Connect with MY Brother's Keeper MS Support Group for all people of color blog:

MyMSMYWAy@blogspot.com. And support group meetings are second Thursday of every

month at: Reynolds Corner Library, 4833 Dorr Street Rm. 2; from 1 p.m. - 2 p.m.

Until we meet again, take charge of your MS and never allow it to take charge of your life.

You can live life on your own terms...your MS, your way.


Shirley

Some Irish Wit: May those who love us, love us; and those that don't love us may God turn their hearts, and if He doesn't turn their hearts may He turn their ankles, so we'll know them by their limping