Before my husband was diagnosed, I only knew two people who had Multiple Sclerosis. One was a sweet lady who went to church with us and I remember her being pushed around in a wheelchair and doted over by her sweet little husband. The other person was my school teacher and she walked, ever so painfully, with canes. To say I was ignorant of this disease would be a gross understatement, because I assumed MS only affected a person's legs.
For those of you who do not know, Multiple Sclerosis is a disease where the insulating covers of nerve cells in the brain and spinal cord are damaged. This damage disrupts the ability of parts of the nervous system to communicate, resulting in a WIDE range of signs and symptoms, including physical, mental, and sometimes psychiatric problems.
The struggle is real and the disease is ugly, but information is liberating. The videos put out by the National MS Society are extremely helpful for people who are trying to understand the many facets of Multiple Sclerosis.
Showing posts with label multiple sclerosis. Show all posts
Showing posts with label multiple sclerosis. Show all posts
Tuesday, October 27, 2015
Wednesday, March 19, 2014
Wednesday, May 29, 2013
Mood Changes and Multiple Sclerosis
Today is World MS Day and, since my husband has MS, I want to do my part in spreading awareness about this chronic disease.
Multiple Sclerosis is an immune system attack against the central nervous system (brain, spinal cord, and optic nerves).
It is also a disease that has an emotional impact on not only the person with MS, but the entire family.
Multiple Sclerosis is an immune system attack against the central nervous system (brain, spinal cord, and optic nerves).
It is also a disease that has an emotional impact on not only the person with MS, but the entire family.
Sunday, December 30, 2012
Two Reasons Why I Sucked at Blogging this Month
A couple of things have happened during the month of December that have taken precedence over blogging.
#1- My son and daughter-in-law had another beautiful baby boy the week before Christmas.
Don- “Do you ever wonder what happened to the girl’s dad?”
 |
| Asher and Uncle Cody |
#2- Don had hernia surgery three days after Christmas.
I'm going to confess. I sort of like my husband a bit drugged up. Not only did the Lortab keep Don awake (a terrific thing since he has MS and is always tired), but I found he was quite amusing.
Upon arriving home from the hospital, I situated Don in the recliner, turned the television on, then plopped down on the sofa with my laptop and permitted Don to entertain me, albeit unintentional...
8:00 p.m.-
Upon arriving home from the hospital, I situated Don in the recliner, turned the television on, then plopped down on the sofa with my laptop and permitted Don to entertain me, albeit unintentional...
8:00 p.m.-
Don- “Do you ever wonder what happened to the girl’s dad?”
Me- “What girl’s dad?”
Don- “The Brady girls.”
I have NO IDEA why Don was suddenly concerned about the Brady girl's real father. All I know is he wasn't talking about Mike Brady. What really baffles me, however, is Don was watching Dateline NBC!
10:00 p.m.-
Don- "I'm not tired, AT ALL!"
Me- Could it be the three Cokes you chugged since we got home at 5:00?"
10:05 p.m.-
Don waddles into the kitchen, picks up a Tangerine and goes on and on about why Cuties are sooo much better than Mandarin Oranges.
10:30 p.m.-
Don- “You like bread pudding, don’tcha?”
WTH? We have been married for 30 years. He should know that I HATE bread pudding! I'm still scratching my head about that one.
Don waddles into the kitchen, picks up a Tangerine and goes on and on about why Cuties are sooo much better than Mandarin Oranges.
10:30 p.m.-
Don- “You like bread pudding, don’tcha?”
WTH? We have been married for 30 years. He should know that I HATE bread pudding! I'm still scratching my head about that one.
Wednesday, October 17, 2012
Friday, June 22, 2012
Jack Osbourne Diagnosed with Multiple Sclerosis
Click on the link below to read about Jack Osbourne's diagnosis. Curiously enough, my husband's first symptoms of Multiple Sclerosis were very much like Jack's.
Jack Osbourne diagnosed with MS | Multiple Sclerosis Society UK
If you want to learn more about MS and how you can get involved, go to nationalmssociety.org.
Jack Osbourne diagnosed with MS | Multiple Sclerosis Society UK
If you want to learn more about MS and how you can get involved, go to nationalmssociety.org.
Saturday, July 16, 2011
Autism and Multiple Sclerosis/ Could There Be a Link?
I stumbled across the following article by Sara Lapinski and was completely taken aback. Because my husband has MS and we have a son with autism, I really want to do my part in getting this information out there.
There was no blogger icon, but I've included the link http://www.ageofautism.com . It's a rather lengthy post, but well worth the read.
Child with Autism and Mom with Multiple Sclerosis
Does your child have autism? Do you have MS? No one talks about it, but there seems to be a link, a link between parents of children with autism being diagnosed with MS. I can’t find anyone who is looking into this….why? Why can’t we find information about the link between the two anywhere?
Let me take a step back. For years now I have suffered from dizziness, headaches, vision issues, and other strange symptoms. I had my first MRI and yes there were small, possible spots of demyelination, but I was reassured this is common in most people walking around today. I was told many interesting things by doctors, but most settled on me having an anxiety disorder.
I was told, “You are dizzy because you have four kids”, “You can’t find your words because you have anxiety”, and better yet, “This is all between your ears, Sweetie”. So I talked myself into being very stressed out, and felt my dizziness was because I was anxious.
Years later, after not thinking about MS again, I received an official, unexpected diagnosis of optic neuritis. I knew right away what this meant, and headed back to the neurologist. I told him of my optic neuritis, commonly one of the first signs of MS, and I told him that I felt like I was occasionally slurring my words. He said, “Everyone slurs their words, I slur my words all the time. Look at you, you’re fine, your exam is fine, trust me, those old spots on your MRI could have been dust on the lens.” He agreed to do a second MRI, just to be safe.
About an hour after doing my second MRI, I am in the waiting room. The doctor comes out and signals me to come back. He says, “Well you do have MS, I can’t believe it, I really was not expecting this.”
Wait a minute…this sounds eerily similar to something I had heard years earlier, not at an appointment for me, but at an appointment for my son. You see, my son was not developing typically. We started early intervention at 10 months of age because my husband and I were noticing some subtle delays. As a first time mom, I just had the feeling something was wrong. At 12 months of age, I started questioning doctors about autism. My little guy just didn’t’ seem like the other kids his age. I had read some articles on red flag signs and, when I did, I felt so scared inside. It sounded just like my baby. The doctors and professionals reassured me “he is fine”. “He just has a little delay”. “He is a boy, you are a nervous first time mom, and you need to relax”. These are just a few of the many things I heard.
Every six months we went back and back. “He would not be looking you in the eyes if he had autism, he is so social, and he is so affectionate” the doctors told me. When my little guy was 3 ½, I took him back again. At this point his speech was completely repetitive and his behavior was spiraling downward. The doctor observed my son for 10 minutes before giving him a diagnosis of autism. I can still hear the doctors words vividly in my brain, “I don’t know how we missed this, I am so sorry.”
One might think I would be upset at the way I have been treated and doubted by doctors over the years, but I am not. Actually I feel fortunate. I received a diagnosis of MS in 2 years, the last I heard the average person waits 6 years for a diagnosis. Yes I was blown off by doctors about my son’s autism but, he did start in early intervention at 10 months and he has always had extreme amounts of therapy. He has worked so very hard, and I am so very grateful for where he is today. Could he possibly be farther along had he been qualified earlier for behavioral interventions? Possibly, but he did very well with the services we had.
What I am mad about is why now when I talk to so many families of children with autism do I find out that one of the parents has MS. Why when I tell my child’s specialist for autism that I have MS does he say to me, “I am so sorry, but unfortunately, it is not uncommon for children in my practice to have a parent with MS.” Why do the doctors who are “ahead of their time” feel that autism is an autoimmune disorder, just like MS? Why are doctors treating MS similarly, almost identically, the same way biomedical doctors are treating autism? Why isn’t the relationship of the two disabilities being tracked? Why can’t I find any research on the correlation between MS and Autism? Will one of them give us answers to the other? Can MS treatments help autism or vice versa? Should I have been warned that I might be at high risk for an autoimmune disorder after my son’s diagnosis? How can parents take care of a child with a disability if they themselves don’t feel good and have no idea what their future of their MS may hold?
Do parents in my situation need to be told in 10 years that there is a correlation between MS and Autism? Do we have to be told we don’t know what we are talking about, to find out later we were right?
I can’t help but think of Chris Martin from Coldplay’s words in his song Clocks, “Am I part of the cure, or am I part of the disease”. Please help parents in my situation be part of the cure.
Sarah Westerfield Lapinski
There was no blogger icon, but I've included the link http://www.ageofautism.com . It's a rather lengthy post, but well worth the read.
Child with Autism and Mom with Multiple Sclerosis
Does your child have autism? Do you have MS? No one talks about it, but there seems to be a link, a link between parents of children with autism being diagnosed with MS. I can’t find anyone who is looking into this….why? Why can’t we find information about the link between the two anywhere?
Let me take a step back. For years now I have suffered from dizziness, headaches, vision issues, and other strange symptoms. I had my first MRI and yes there were small, possible spots of demyelination, but I was reassured this is common in most people walking around today. I was told many interesting things by doctors, but most settled on me having an anxiety disorder.
I was told, “You are dizzy because you have four kids”, “You can’t find your words because you have anxiety”, and better yet, “This is all between your ears, Sweetie”. So I talked myself into being very stressed out, and felt my dizziness was because I was anxious.
Years later, after not thinking about MS again, I received an official, unexpected diagnosis of optic neuritis. I knew right away what this meant, and headed back to the neurologist. I told him of my optic neuritis, commonly one of the first signs of MS, and I told him that I felt like I was occasionally slurring my words. He said, “Everyone slurs their words, I slur my words all the time. Look at you, you’re fine, your exam is fine, trust me, those old spots on your MRI could have been dust on the lens.” He agreed to do a second MRI, just to be safe.
About an hour after doing my second MRI, I am in the waiting room. The doctor comes out and signals me to come back. He says, “Well you do have MS, I can’t believe it, I really was not expecting this.”
Wait a minute…this sounds eerily similar to something I had heard years earlier, not at an appointment for me, but at an appointment for my son. You see, my son was not developing typically. We started early intervention at 10 months of age because my husband and I were noticing some subtle delays. As a first time mom, I just had the feeling something was wrong. At 12 months of age, I started questioning doctors about autism. My little guy just didn’t’ seem like the other kids his age. I had read some articles on red flag signs and, when I did, I felt so scared inside. It sounded just like my baby. The doctors and professionals reassured me “he is fine”. “He just has a little delay”. “He is a boy, you are a nervous first time mom, and you need to relax”. These are just a few of the many things I heard.
Every six months we went back and back. “He would not be looking you in the eyes if he had autism, he is so social, and he is so affectionate” the doctors told me. When my little guy was 3 ½, I took him back again. At this point his speech was completely repetitive and his behavior was spiraling downward. The doctor observed my son for 10 minutes before giving him a diagnosis of autism. I can still hear the doctors words vividly in my brain, “I don’t know how we missed this, I am so sorry.”
One might think I would be upset at the way I have been treated and doubted by doctors over the years, but I am not. Actually I feel fortunate. I received a diagnosis of MS in 2 years, the last I heard the average person waits 6 years for a diagnosis. Yes I was blown off by doctors about my son’s autism but, he did start in early intervention at 10 months and he has always had extreme amounts of therapy. He has worked so very hard, and I am so very grateful for where he is today. Could he possibly be farther along had he been qualified earlier for behavioral interventions? Possibly, but he did very well with the services we had.
What I am mad about is why now when I talk to so many families of children with autism do I find out that one of the parents has MS. Why when I tell my child’s specialist for autism that I have MS does he say to me, “I am so sorry, but unfortunately, it is not uncommon for children in my practice to have a parent with MS.” Why do the doctors who are “ahead of their time” feel that autism is an autoimmune disorder, just like MS? Why are doctors treating MS similarly, almost identically, the same way biomedical doctors are treating autism? Why isn’t the relationship of the two disabilities being tracked? Why can’t I find any research on the correlation between MS and Autism? Will one of them give us answers to the other? Can MS treatments help autism or vice versa? Should I have been warned that I might be at high risk for an autoimmune disorder after my son’s diagnosis? How can parents take care of a child with a disability if they themselves don’t feel good and have no idea what their future of their MS may hold?
Do parents in my situation need to be told in 10 years that there is a correlation between MS and Autism? Do we have to be told we don’t know what we are talking about, to find out later we were right?
I can’t help but think of Chris Martin from Coldplay’s words in his song Clocks, “Am I part of the cure, or am I part of the disease”. Please help parents in my situation be part of the cure.
Sarah Westerfield Lapinski
Thursday, June 9, 2011
Multiple Sclerosis Awareness
Multiple Sclerosis is a chronic, unpredictable disease of the central nervous system. World-wide, MS affects about 2.5 million people (http://www.nationalmssociety.org/). No two cases are exactly alike, and symptoms vary considerably from one individual to another.
Don, my husband, has Multiple Sclerosis. I do not blog about it often, probably because it isn't as "in my face" as Cody's autism is. HOWEVER, Don recently went in for more tests and, I am happy to say that his neurologist gave him a good report.
Last summer I wrote a post about attending a Multiple Sclerosis event with my husband where Jordan Sigalet, a retired Canadian Ice Hockey Goaltender, was the guest speaker. Jordan was born in 1981, the same year as Cody.
To show support of MS awareness, I am reposting Jordan's clip for those of you who may have missed it last year.
Don, my husband, has Multiple Sclerosis. I do not blog about it often, probably because it isn't as "in my face" as Cody's autism is. HOWEVER, Don recently went in for more tests and, I am happy to say that his neurologist gave him a good report.
Last summer I wrote a post about attending a Multiple Sclerosis event with my husband where Jordan Sigalet, a retired Canadian Ice Hockey Goaltender, was the guest speaker. Jordan was born in 1981, the same year as Cody.
To show support of MS awareness, I am reposting Jordan's clip for those of you who may have missed it last year.
Saturday, January 29, 2011
Claustrophobia
The first time I learned of my husband's claustrophobia was about 20 years ago. We had been camping in a small trailer that had foil across the back window where the bed was located. Don was sleeping on the inside of the bed, near the back wall, and I was sleeping on the outside so I could get up and down easily with the kids, or to pee, but that's irrelevant. The point is, Don woke up during the night and couldn't see a thing. It was pitch black and he darn near killed me as he climbed on and over my sleeping body to get out.
A few years ago, we learned that Don has Relapsing Multiple Sclerosis. His neurologist wanted to see if the MS has progressed or stayed the same, so she ordered an MRI last week. I am quite amazed that he was even able to get in that machine!
A few years ago, we learned that Don has Relapsing Multiple Sclerosis. His neurologist wanted to see if the MS has progressed or stayed the same, so she ordered an MRI last week. I am quite amazed that he was even able to get in that machine!
The good news is, Don's MRI showed absolutely no change. Yay!
Friday, July 16, 2010
Jordan Sigalet of the NHL
Don and I had the opportunity to see Jordan in person (he even sat next to me) at a Multiple Sclerosis meeting last night. His story is inspiring!
Monday, June 21, 2010
Multiple Sclerosis
"I have this tingling feeling that goes down my cheek, kind of like a teardrop" my husband told me numerous times. I became concerned. I was thinking "Oh my. What if he has a brain tumor?"
I insisted that he go see our family physician.
The doctor ran some tests, one of which was an MRI. We waited, not too concerned, but it was in the back of our minds. After a short amount of time, the doctor called my husband and told him the MRI showed all the signs of MS and referred him to a neurologist.
Relapsing Multiple Sclerosis; that's what they call my husband's condition. He was told he probably has had MS for years. Starting in his late twenty's when he lost peripheral vision in one eye.
Multiple Sclerosis is a disease in which your body's immune system eats away at the protective sheath that covers your nerves. This interferes with the communication between your brain and the rest of your body. Symptoms vary widely, depending on the amount of damage and which particular nerves are affected.
If you would like more facts about Multiple Sclerosis from professionals, I would suggest starting with http://www.mslifelines.com/.
If you would like to talk to me on a personal level, please leave your comments and I will be happy to respond :)
I insisted that he go see our family physician.
The doctor ran some tests, one of which was an MRI. We waited, not too concerned, but it was in the back of our minds. After a short amount of time, the doctor called my husband and told him the MRI showed all the signs of MS and referred him to a neurologist.
Relapsing Multiple Sclerosis; that's what they call my husband's condition. He was told he probably has had MS for years. Starting in his late twenty's when he lost peripheral vision in one eye.
Multiple Sclerosis is a disease in which your body's immune system eats away at the protective sheath that covers your nerves. This interferes with the communication between your brain and the rest of your body. Symptoms vary widely, depending on the amount of damage and which particular nerves are affected.
If you would like more facts about Multiple Sclerosis from professionals, I would suggest starting with http://www.mslifelines.com/.
If you would like to talk to me on a personal level, please leave your comments and I will be happy to respond :)
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