I guess it is safe to say I have not taken blogging very seriously. But one last post

These are the sites that led me to take Low Dose Naltrexone, the drug that stopped the progression of my MS and improved my walking, thinking and fatigue.( to say the least) For me it is a miracle drug so perchance a person with ms actually visits this site here is the information that may help you.


http://www.ldnresearchtrust.org/
http://www.nationalmssociety.org/Treating-MS/Complementary-Alternative-Medicines/Low-Dose-Naltrexone
http://www.lowdosenaltrexone.org/ldn_and_ms.htm

Please take the time to check it out.

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.

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/

NO Cane NO GAIN

No Cane no Gain

I Didn't Fall I attacked the Floor

MS Byte # Hello there. Long time no post. A few days after my last post I had an acute MS attack. ( also known as an exacerbation, see below) I awoke feeling light headed and tingling in my legs that had been getting worse the last few days seemed more bothersome. I sat up in bed and asked my husband to bring me a drink and maybe a gluten free craker as my stomach began to feel week as did my entire body. My first thought was that I had low blood sugar. Suddenly a wave of what felt like fire(no exaggeration)crawled up my legs, into my chest and throat. I felt soooo much pain and fear. I felt that if it reached my head I would surel die, no exaggeration. I took a step forward and collapsed, too weak to move or speak correctly and my husband called 911. I could go into more detail but I think you get the picture. MS is a terrible unpredictable disease and I thank God the prayer of a dear Priest I am able to use my legs but I am very week from this attack and I need to use a cane.(Time to buy a stair chair lift thingy) The muslces in my face, throat, legs and arms are still effected and I have not returned to normal. I thought I would be spending my summer at a cottage but I spent most of it in OT and PT and speech therarpy trying to make sense of this and heal. My son and oldest daughter came home to help with driving and meals. I have so much to be thankful for. I cope with A good sense of humor, support from family,faith, and friends helps but so many peopel who have this disease become isolated. Their cognitive and physical problems make them afraid to socialize and the financial burdens they have to face is astronomical. (It could cost as much as 30,000 dollars a year to care for a person who is homebound with MS) Looking forward to my third IV steriod injection this week (not, side effects stink) but still it could make a big difference and long term give me a little more quality of life. Hope you enjoy the photo. I hope it makes you laugh!Laughter is the best medicine.

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.

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

But You Look so Good

People diagnosed with MS often have invisible symptoms that progress to debilitating symptoms.

Invisible Symptoms

I am not sure wich is more frustrating, my inability to recall the vocabulary and grammar necessary to build a sentence when I am writing or speaking or the annoyance of losing a word mid-sentence or saying the opposite of what I am intending to say.This is just one of the invisible symptoms of MS. Frustrating the people around you or being underestimated by the people around you is just one of the consquences. It is so tempting to just want to isolate oneself so as not to look like a fool. After all this world seems to constantly be sending us all the message that we have to be perfect to be worthwhile. i.e. We abort unborn babies who are Down Syndrome and we consider it mercy to kill the elderly and infirmed. I know I need to edit this but it is too stressful. Too exhausting. So much for all those A+ grades I used to receive in grammar and spelling.
I wont shrink back though. Life is good , no matter how imperfect. I hope this disability will challenge us to find hope and dignity in places where it appears there should be none. To accept your own imperfections and embrace Life.

MS Byte #6 Spasticity/Cognitive dysfuncion, I forget

"I suffer from short term memory loss. It runs in my family... At least I think it does... Where are they?" Dory, finding Nemo

My kids call me Dory(pictured above. The forgetful fish in the movie "Finding Nemo".
According to the MS society..
"Cognitive dysfunction affects about 50-65% of people with MS. The problems can have an impact on attention, information processing, memory, planning, insight, or problem solving. Loss of myelin insulating material around nerve fibers can cause difficulty with transporting memories to storage areas of the brain or retrieving them from the storage areas.
......Whoops, I forgot I think we already had a byte on cognitive issues, lets switch gears.
Byte#6 Spasticity is a symptom of MS. According to the National MS society...'Spacity refers to feelings of stiffness and a wide range of involuntary muscle spasms (sustained muscle contractions or sudden movements). It is one of the more common symptoms of MS. Spasticity may be as mild as the feeling of tightness of muscles or may be so severe as to produce painful, uncontrollable spasms of extremities, usually of the legs. Spasticity may also produce feelings of pain or tightness in and around joints, and can cause low back pain. Although spasticity can occur in any limb, it is much more common in the legs."for more
http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/symptoms/index.aspx

MS Bytes # 5

According to the MS Society,
Fatigue is one of the most common symptoms of MS, occurring in about 80% of people. Fatigue can significantly interfere with a person's ability to function at home and at work, and may be the most prominent symptom in a person who otherwise has minimal activity limitations.

If you know someone who has MS you should not be surprised that on somedays they may need to use a cane or wheelchair to remain mobile and on other days not. People with MS have problems with balance,coordination and memory all of which may contribute to the making the simplest tasks exhausting. Have you ever tried walking when you are in a pool that is at least waste high? Everyday walking can feel like that for someone who has MS. Not easy? Exhausting? That's MS.