Sunday, September 16, 2012
Pain and MS
Multiple sclerosis (MS) More than half of the people with multiple sclerosis (MS) find that pain is a problem. Pain appears to result from "short circuits" in the pathways that carry sensory impulses between the brain and spinal cord. It is not a predictor of the course of MS. http://www.mslifelines.com/pages/what-is-ms/symptom_detail_pain It is often chronic and disruptive to sleep and normal activities are limited because of it. It can be immobilizing.
Friday, August 31, 2012
MS CAN DO
It was agreat summer in a lot of ways.
Why do I say that, considering that I have been ill most of the time this summer? Because despite the fact I could not do many things, I did take a chance on going sailing and I loved it!
My dad used to take us sailing as kids. I loved it then too. But memories of the vertigo that resulted after a long sail making it hard to walk made me wonder how much worse it could be now that I am diagnosed with MS.
Vertigo happens everyday, to a lot of people who have MS,even when they don’t go sailing. I had experienced it when I was rushed to the hospital and so I was afraid that my balance and weakness would make it unsafe or difficult for me to sail. Despite that, I took a chance and the four hour sail was awesome! The wind and weather were just right. If felt so great to sit on the side of the boat in the cool breeze, with my legs and feet dangling over its edge as the water sprayed up onto the bow. In those moments I didn’t have MS. I felt like a kid again, free and easy. Caution told me that I was taking a chance on getting too tired, losing my balance and falling overboard or getting so dizzy that I would be sick. But it wasn’t until two hours into the sail that I tired and it was worth it. It felt great! I don't know if I will be able to do it again but that will not stop me from trying. Some people with MS can still do so much while others can do what appears to be very little.
~I always get so mad when I read the websites about MS and there is a story about some guy,and who is bragging about how he went mountain climbing or persevered in being a champion swimmer with MS. I guess stories like that may motivate us to stay positive and to focus on what we can do! That’s great but the sites often neglect to show that this is probably only the case because he/she is in remission or has a case that does not affect energy levels. This makes me think that no one will want to donate money to find a cure. People may be thinking that overcoming MS is a matter of will power and will power can only help so much. Or they may think , "Why contribute after all, if you can climb mountains or still go to work , what on earth are you all complaining about” (Oh, ya , wait ,right MS is degenerative and progressive, but let's think positive)
On the other hand, like any disease that causes limitations, MS can give one an opportunity to try new things and take new paths that one may have overlooked. When I am on bed rest, I try and catch up on thank you notes or I call or pray for someone I know, who may also be feeling badly. I find that if I can take the time to reach out and do at least one nice thing for someone, it makes things better. Starting a book club or a prayer group, going back to school are some more ideas. I found a great website that may help with discouragement if you have it. I haven’t joined this program yet but I thought I would post it for families with MS. Please let me know if you are helped by it. It is http://www.mscando.org/
Why do I say that, considering that I have been ill most of the time this summer? Because despite the fact I could not do many things, I did take a chance on going sailing and I loved it!
My dad used to take us sailing as kids. I loved it then too. But memories of the vertigo that resulted after a long sail making it hard to walk made me wonder how much worse it could be now that I am diagnosed with MS.
Vertigo happens everyday, to a lot of people who have MS,even when they don’t go sailing. I had experienced it when I was rushed to the hospital and so I was afraid that my balance and weakness would make it unsafe or difficult for me to sail. Despite that, I took a chance and the four hour sail was awesome! The wind and weather were just right. If felt so great to sit on the side of the boat in the cool breeze, with my legs and feet dangling over its edge as the water sprayed up onto the bow. In those moments I didn’t have MS. I felt like a kid again, free and easy. Caution told me that I was taking a chance on getting too tired, losing my balance and falling overboard or getting so dizzy that I would be sick. But it wasn’t until two hours into the sail that I tired and it was worth it. It felt great! I don't know if I will be able to do it again but that will not stop me from trying. Some people with MS can still do so much while others can do what appears to be very little.
~I always get so mad when I read the websites about MS and there is a story about some guy,and who is bragging about how he went mountain climbing or persevered in being a champion swimmer with MS. I guess stories like that may motivate us to stay positive and to focus on what we can do! That’s great but the sites often neglect to show that this is probably only the case because he/she is in remission or has a case that does not affect energy levels. This makes me think that no one will want to donate money to find a cure. People may be thinking that overcoming MS is a matter of will power and will power can only help so much. Or they may think , "Why contribute after all, if you can climb mountains or still go to work , what on earth are you all complaining about” (Oh, ya , wait ,right MS is degenerative and progressive, but let's think positive)
On the other hand, like any disease that causes limitations, MS can give one an opportunity to try new things and take new paths that one may have overlooked. When I am on bed rest, I try and catch up on thank you notes or I call or pray for someone I know, who may also be feeling badly. I find that if I can take the time to reach out and do at least one nice thing for someone, it makes things better. Starting a book club or a prayer group, going back to school are some more ideas. I found a great website that may help with discouragement if you have it. I haven’t joined this program yet but I thought I would post it for families with MS. Please let me know if you are helped by it. It is http://www.mscando.org/
Thursday, August 30, 2012
NO Cane NO GAIN
No Cane no Gain
I often forget to use my cane when I am in the house ,as there is always a wall or a piece of furniture I could grab onto, if I need to, besides I like to tell myself, I don’t need it. It is a help and a hindrance all at once and so it took some getting used to but now I am glad I have it. It definitely saves me energy and worry and so I am learning to realize that following the doctor’s order by using it all the time does give me an advantage and another way to fight this illness. I am also, fighting progressive MS with IV steroids today. It is my last of a three month regiment. It is not a cure but may help cut down on the inflammation in my brain and body and so calm some of my symptoms and maybe delay progression. Today’s MS Byte is about the four courses of MS. Here the info taken from www.nationalmssociety.org
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Relapsing-Remitting MS (RRMS)
RRMS is the most common form of the disease. It is characterized by clearly defined acute attacks with full recovery (1a) or with residual deficit upon recovery (1b). Periods between disease relapses are characterized by a lack of disease progression. Approximately 85% of people with MS begin with a relapsing-remitting course
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Primary Progressive MS (PPMS)
PPMS is characterized by progression of disability from onset, without plateaus or remissions (2a) or with occasional plateaus and temporary minor improvements (2b). A person with PPMS, by definition, does not experience acute attacks. Of people with MS are diagnosed, only 10% have PPMS. In addition, the diagnostic criteria for PPMS are less secure than those for RRMS so that often the diagnosis is only made long after the onset of neurological symptoms and at a time when the person is already living with significant disability.
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Secondary-Progressive MS (SPMS)
SPMS begins with an initial relapsing-remitting disease course, followed by progression of disability (3a) that may include occasional relapses and minor remissions and plateaus (3b). Typically, secondary-progressive disease is characterized by: less recovery following attacks, persistently worsening functioning during and between attacks, and/or fewer and fewer attacks (or none at all) accompanied by progressive disability. According to some natural history studies, of the 85% who start with relapsing-remitting disease, more than 50% will develop SPMS within 10 years; 90% within 25 years. More recent natural history studies (perhaps because of the use of MRI to assist in the diagnosis) suggest a more benign outlook than these numbers suggest. Nevertheless, many patients with RRMS do develop SPMS ultimately.
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Progressive-Relapsing MS (PRMS)
PRMS, which is the least common disease course, shows progression of disability from onset but with clear acute relapses, with (4a) or without (4b) full recovery. Approximately 5% of people with MS appear to have PRMS at diagnosis. Not infrequently a patient may be initially diagnosed as having PPMS and then will experience an acute attack, thereby establishing the diagnosis of PRMS.
More info at http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/what-is-ms/four-disease-courses-of-ms/index.aspx
Saturday, August 25, 2012
I Didn't Fall I attacked the Floor
P.S. About a year After using a cane and purchasing stair lift I tried the off label use of the drug Low Dose Naltrexone. I now walk 99% of the time without a cane. Fatigue is in control. It has been a life savor.
Monday, January 23, 2012
ms bytes
"I do not think that there is any other quality so essential to success of any kind as the quality of perseverance. It overcomes almost everything, even nature. "
John D. Rockefeller
Read more: http://www.brainyquote.com/quotes/keywords/perseverance.html#ixzz1kKJgdjZK
Saturday, January 7, 2012
But You Look so Good
People diagnosed with MS often have invisible symptoms that progress to debilitating symptoms.
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