My MS spasticity had increased and increasing the oral baclofen resulted in my entire body swelling and functionality almost at zero. I ended up in the hospital to reduce the swelling and was introduced to the baclofen pump. After discharge I tool my healthcare into my own hands and pursued the baclofen pump. After consulting with the Dr., Physician Assistant, and Medtronic Rep I made the decision to have the Medtronic ITB pump implanted.
Before the pump was implanted I needed to have a test dose to ensure that this form of medicine infusion would work. It was amazing how fast my spasms disappeared. I am a past Medtronic Employee which sped up my surgery date to four days after the test dose.
I am a different person now. My spasms are gone, but so is the tone in my legs. This means that I was using the spasms to help stand and transfer. I now need to do quite a bit of physical therapy to strengthen my muscles. I also have so much more energy. I used to wake up and see everything as hard work, which meant not much got done. Now I am accomplishing so much more and even taking on the little things that I never even would have touched before.
Here is a clip from the Medtronic website about their pump
"People who suffer from severe spasticity resulting from cerebral palsy, multiple sclerosis, stroke, traumatic brain injury, or spinal cord injury may be a candidate for ITB Therapy. If you have spasticity due to spinal cord injury or multiple sclerosis you must first fail oral baclofen. If you have experienced a traumatic brain injury you must first wait 1 year after the injury to be considered for ITB Therapy. A screening test will help show if you will respond to the intrathecal baclofen. You should not receive ITB Therapy if you have an infection, are allergic to baclofen, or your body size is too small to hold the implantable pump."
For more information about the pump click here.
Tuesday, June 1, 2010
Monday, April 26, 2010
How to Stay Informed About Multiple Sclerosis
People with multiple sclerosis (MS) and their families need to keep up with the latest information on MS symptoms, treatments and advice on how to cope with their condition. This information is consistently updated, but you can stay informed about these issues regarding multiple sclerosis, and many other MS topics, with these four reputable sources.
For the full story click here.
For the full story click here.
Sunday, April 4, 2010
Sister Kenny, Minnesota
There is something to be said about not being able to use your legs properly. This was the case for me recently and I ended up staying, for 10 days, at Sister Kenny Rehab Institute in Minnesota. They are well known for their rehabilitation regime and it worked for me. With the use of botox shots in my leg and some good physical and occupational therapy I am back home. My leg is still giving me a little trouble but there continues to be physical therapy at home and I know that I will be able to 'achieve' again.
Wednesday, January 27, 2010
How to Research AmpyraT as a Treatment for Multiple Sclerosis
The food and Drug Administration (FDA) recently approved AmpyraT (formerly known as fampridine SR, from Acorda Therapeutics) as a symptomatic treatment to improve walking for people with Multiple Sclerosis (MS). There are many reputable websites where there is information to research AmpyraT as a treatment for MS.
For the full article click here.
For the full article click here.
Thursday, January 21, 2010
How to Research Use of Cladribine for Multiple Sclerosis
Cladribine is an oral chemotherapy medication that has been used to treat hairy cell leukemia. This potential MS treatment drug has been the center of clinical studies for the treatment of relapsing progressive Multiple Sclerosis. There are several respectable sources to find out more information about the studies and the use of Cladribine for the treatment of Multiple Sclerosis.
For the full story click here.
For the full story click here.
Oral multiple sclerosis drug shows promise
January 20, 2010 | 2:00 pm
A large study on a new oral medication for multiple sclerosis has yielded promising results both in terms of how well the drug works and its safety, according to a study published today in the New England Journal of Medicine.
MS
The drug, Cladribine, is an existing chemotherapy medication that is used to treat hairy cell leukemia. It
would be the first tablet medication for MS and would only need to be taken for eight or 10 days a year. Currently, MS drug treatments include injections and intravenous infusions. The disease is a neurological condition that often beings in young adulthood and can lead to problems with muscle control, vision, hearing and memory.
The new study included 1,300 MS patients who were followed for nearly two years and had regular MRI scans to assess the progression of the disease. Patients were given either a short treatment of Cladribine or a placebo. Compared to the patients taking the placebo, patients on the medication were 55% less likely to have a relapse and 30% less likely to have a worsening of disability. The study was performed at Queen Mary, University of London.
The drug company MD Serono, an affiliate of Merck, has requested approval from the Food and Drug Administration to market the tablet. However it recently received a "refuse to file" letter from the FDA, which means the agency is requiring additional information or data. MD Serono said it is pursuing the matter with the FDA and hopes to re-submit its application.
The drug is of wide interest, note officials from the National Multiple Sclerosis Society. Cladribine "would represent a major treatment breakthrough -- hopefully the first of many successful oral therapies in the pipeline," Dr. John R. Richert, executive vice president of research and clinical programs for the National MS Society, said in a statement.
-- Shari Roan
A large study on a new oral medication for multiple sclerosis has yielded promising results both in terms of how well the drug works and its safety, according to a study published today in the New England Journal of Medicine.
MS
The drug, Cladribine, is an existing chemotherapy medication that is used to treat hairy cell leukemia. It
would be the first tablet medication for MS and would only need to be taken for eight or 10 days a year. Currently, MS drug treatments include injections and intravenous infusions. The disease is a neurological condition that often beings in young adulthood and can lead to problems with muscle control, vision, hearing and memory.
The new study included 1,300 MS patients who were followed for nearly two years and had regular MRI scans to assess the progression of the disease. Patients were given either a short treatment of Cladribine or a placebo. Compared to the patients taking the placebo, patients on the medication were 55% less likely to have a relapse and 30% less likely to have a worsening of disability. The study was performed at Queen Mary, University of London.
The drug company MD Serono, an affiliate of Merck, has requested approval from the Food and Drug Administration to market the tablet. However it recently received a "refuse to file" letter from the FDA, which means the agency is requiring additional information or data. MD Serono said it is pursuing the matter with the FDA and hopes to re-submit its application.
The drug is of wide interest, note officials from the National Multiple Sclerosis Society. Cladribine "would represent a major treatment breakthrough -- hopefully the first of many successful oral therapies in the pipeline," Dr. John R. Richert, executive vice president of research and clinical programs for the National MS Society, said in a statement.
-- Shari Roan
Sunday, November 9, 2008
What Does Your Partner Find Sexy About YourDisability?
By Mitchell Tepper, Ph.D., M.P.H.
HSAB Affiliation: Managing Director.
This time I asked the question! I posed this to disability-focused lists and forums: What do our partners find sexy about our disabilities?
The question was an attempt to focus on sexy as a normal part of the disability experience and relationships. It seemed to me that we were getting to the point where we could not talk about being sexy without the D word popping up. Anyone who gets involved with someone who has a disability becomes suspect and is assumed a devotee. This does an injustice to all parties. The person attracted to someone with a disability automatically gets labeled as having a fetish and his or her motives are called into question. The partner with the disability is assumed unattractive, suggesting one must be unbalanced to be attracted to us. And the person who is actually sexually oriented to some aspect of a disability - whether it be a brace or a stump or a leg bag - is automatically assumed to be deviant in all aspects of his or her sexual relationships. Sexual relationships and sexual orientations are much more complex than this.
Just because someone finds something sexy or attractive about a various aspect of a disability, say a scar for example, doesn’t make him or her a devo or a deviate. I would not characterize my wife as a devo yet there are things she finds sexy about me related to my disability.
For example, there’s an indent in my hip where they took bone out for an anterior fusion in my neck, and my wife likes to feel it. I also have a wide scar on my abdomen from some surgery. It’s very smooth and she traces it with her finger. My fingers are contracted and when we were first courting she used to almost unconsciously stretch them out and massage them as we talked. Sexy doesn’t have to be just physical. It could be the way you relate. I could go on, but others have their own perspectives to add to the mix.
As expected when doing research on sexuality and disability, some people thought the question was provocative, others perverse, and still others, plain perverted. As I explained to some, the actual question really just serves as a bridge into discussions around this topic. People will interpret and react to it from their own perspective. The responses are important as they add richness to the various dimensions of our relationships.
Love is Blind
Quadlover said he has often wondered about this question and suggested maybe it is true that love is blind. For many it was. They didn’t see the disability, only the person. L&k says "My babe is 6 months new to a C5-C6 SCI, incomplete injury. I find her extremely sexy. I always have and I always will. She is the same person to me, inside and out, as before her injury. Though she can’t walk, we continue to do things together, spend time, etc. as before. That’s what really counts."
Annonymous notes, "I didn’t know the person I love before [the disability], but I have seen pictures. They are just as sexy to me now as they are in those pictures...more so maybe because of the special person they are inside and out. And gorgeous - gorgeous indeed!"
Darlene, who has cerebral palsy, asked her able-bodied partner, who replied, "Who said I found anything about your disability sexy? How about you send something in that says I find YOU sexy notwithstanding your disability."
Scooter said, "The bottom line is women aren’t attracted to me because of my chair, but because of the man sitting in it." Keith asked his spouse what she found sexy or exciting about his disability and she simply stated, "The guy that comes with the disability." "Go figure," he says.
The Whole Package
Ingrid was inspired to ask her partner, Robert, of 18 years what he finds sexy about her. He said it was "the whole package," particularly her enthusiasm, her sense of fun, her hugs, her body weight and her body color. She then asked him the opposite question: does he find anything unsexy about her disability. She thought he might mention the fact that he has to position her, but all he said was that sometimes he felt pain during intercourse because her pelvis is tilted as her hips are inverted due to cerebral palsy. Ingrid guesses that they just love each other.
Nicko was afraid this might be a very short article as sexy is not a word she connects with her disability. Her husband thought she was sexy before her accident, and he still finds her sexy. She thinks it is despite her disability, not because of it. She writes, "I think he admires my mind and spirit, because of the way I deal with problems and keep a big smile on my face. But I think he’d like the ’old bod’ back as much as I would."
Attitude is Everything
Veranda notes, "My partner says what makes me sexy is the way that I carry myself. I still wear cute and sexy clothes, faithfully go get my nails done, and every three months I get my hair colored or touched up with highlights because I believe I have no limits. And he also says [he likes] the way I still want to have a sexual relationship even though I’m in a chair. I also have a scar on my leg that he always rubs and says is sexy. To paraphrase a bit from Forest Gump, I think sexy is what sexy does."
From Greg, "My spouse likes my availability. I have MS and I get to stay home a lot. I conserve what energy I do have for spending time with my lover."
Scars
Many people related to my example of a scar. Maybe as Scooter noted it is because every scar tells a story about us. Angus has noticed that when girls rub the scar on the back of his neck their eyes light up. "Chicks dig scars!" he says.
Guys do too. Chipper wrote that her husband really likes her strong arms and the scars on her back from all the spine surgery she has had. "I find that he traces the scars on my back when he is tense and when he is aroused."
Erica was quite excited about the scar thing also: "Actually a lot of the guys I dated LOVED this scar I have on my belly right above my belly button from where they opened me up to check for any internal bleeding...They thought the scar was sexy as hell...I used to be so self conscious about my scars and now I like them."
Muscles
Mishapie shared that her boyfriend with a T4 injury from eight years ago has the most beautiful arms and shoulders she has ever seen or felt. "He doesn’t understand why I’m so turned on when he flexes his arm in my hand...and now I’m comfortable enough to not be self-conscious when I touch him where he can’t feel...He’s so beautiful to me, all over."
"It’s All Bad"
There were a few out there who could see nothing sexy about disability. One person noted that there were non-disability related things about him that his wife liked, but there were no physical, mental or emotional traits brought on by his disability that she likes (or that he liked, for that matter). "It’s all bad," he said.
While we cannot do much to change the physical, I have to believe there is hope to improve the mental and emotional outlook. Our choice of our outlook on life is one thing that is within our control, and sexy is in the eye of the beholder.
For those who have questioned how anyone can find them attractive with a disability, here is your answer! Partners do find us - including things about our disability - sexy! Disabled does not equal unattractive and disability has the potential to bring out some admirable qualities. Sometimes we don’t believe it when our own partner says we are still sexy because we may feel so different from people without disabilities or from ourselves, in the case of an acquired disability. I think it is affirming for everyone to hear partners’ perspectives.
Having a disability does not mean that you do not enjoy a sexual experience anymore.
Click here for more ideas of how to love yourself.
HSAB Affiliation: Managing Director.
This time I asked the question! I posed this to disability-focused lists and forums: What do our partners find sexy about our disabilities?
The question was an attempt to focus on sexy as a normal part of the disability experience and relationships. It seemed to me that we were getting to the point where we could not talk about being sexy without the D word popping up. Anyone who gets involved with someone who has a disability becomes suspect and is assumed a devotee. This does an injustice to all parties. The person attracted to someone with a disability automatically gets labeled as having a fetish and his or her motives are called into question. The partner with the disability is assumed unattractive, suggesting one must be unbalanced to be attracted to us. And the person who is actually sexually oriented to some aspect of a disability - whether it be a brace or a stump or a leg bag - is automatically assumed to be deviant in all aspects of his or her sexual relationships. Sexual relationships and sexual orientations are much more complex than this.
Just because someone finds something sexy or attractive about a various aspect of a disability, say a scar for example, doesn’t make him or her a devo or a deviate. I would not characterize my wife as a devo yet there are things she finds sexy about me related to my disability.
For example, there’s an indent in my hip where they took bone out for an anterior fusion in my neck, and my wife likes to feel it. I also have a wide scar on my abdomen from some surgery. It’s very smooth and she traces it with her finger. My fingers are contracted and when we were first courting she used to almost unconsciously stretch them out and massage them as we talked. Sexy doesn’t have to be just physical. It could be the way you relate. I could go on, but others have their own perspectives to add to the mix.
As expected when doing research on sexuality and disability, some people thought the question was provocative, others perverse, and still others, plain perverted. As I explained to some, the actual question really just serves as a bridge into discussions around this topic. People will interpret and react to it from their own perspective. The responses are important as they add richness to the various dimensions of our relationships.
Love is Blind
Quadlover said he has often wondered about this question and suggested maybe it is true that love is blind. For many it was. They didn’t see the disability, only the person. L&k says "My babe is 6 months new to a C5-C6 SCI, incomplete injury. I find her extremely sexy. I always have and I always will. She is the same person to me, inside and out, as before her injury. Though she can’t walk, we continue to do things together, spend time, etc. as before. That’s what really counts."
Annonymous notes, "I didn’t know the person I love before [the disability], but I have seen pictures. They are just as sexy to me now as they are in those pictures...more so maybe because of the special person they are inside and out. And gorgeous - gorgeous indeed!"
Darlene, who has cerebral palsy, asked her able-bodied partner, who replied, "Who said I found anything about your disability sexy? How about you send something in that says I find YOU sexy notwithstanding your disability."
Scooter said, "The bottom line is women aren’t attracted to me because of my chair, but because of the man sitting in it." Keith asked his spouse what she found sexy or exciting about his disability and she simply stated, "The guy that comes with the disability." "Go figure," he says.
The Whole Package
Ingrid was inspired to ask her partner, Robert, of 18 years what he finds sexy about her. He said it was "the whole package," particularly her enthusiasm, her sense of fun, her hugs, her body weight and her body color. She then asked him the opposite question: does he find anything unsexy about her disability. She thought he might mention the fact that he has to position her, but all he said was that sometimes he felt pain during intercourse because her pelvis is tilted as her hips are inverted due to cerebral palsy. Ingrid guesses that they just love each other.
Nicko was afraid this might be a very short article as sexy is not a word she connects with her disability. Her husband thought she was sexy before her accident, and he still finds her sexy. She thinks it is despite her disability, not because of it. She writes, "I think he admires my mind and spirit, because of the way I deal with problems and keep a big smile on my face. But I think he’d like the ’old bod’ back as much as I would."
Attitude is Everything
Veranda notes, "My partner says what makes me sexy is the way that I carry myself. I still wear cute and sexy clothes, faithfully go get my nails done, and every three months I get my hair colored or touched up with highlights because I believe I have no limits. And he also says [he likes] the way I still want to have a sexual relationship even though I’m in a chair. I also have a scar on my leg that he always rubs and says is sexy. To paraphrase a bit from Forest Gump, I think sexy is what sexy does."
From Greg, "My spouse likes my availability. I have MS and I get to stay home a lot. I conserve what energy I do have for spending time with my lover."
Scars
Many people related to my example of a scar. Maybe as Scooter noted it is because every scar tells a story about us. Angus has noticed that when girls rub the scar on the back of his neck their eyes light up. "Chicks dig scars!" he says.
Guys do too. Chipper wrote that her husband really likes her strong arms and the scars on her back from all the spine surgery she has had. "I find that he traces the scars on my back when he is tense and when he is aroused."
Erica was quite excited about the scar thing also: "Actually a lot of the guys I dated LOVED this scar I have on my belly right above my belly button from where they opened me up to check for any internal bleeding...They thought the scar was sexy as hell...I used to be so self conscious about my scars and now I like them."
Muscles
Mishapie shared that her boyfriend with a T4 injury from eight years ago has the most beautiful arms and shoulders she has ever seen or felt. "He doesn’t understand why I’m so turned on when he flexes his arm in my hand...and now I’m comfortable enough to not be self-conscious when I touch him where he can’t feel...He’s so beautiful to me, all over."
"It’s All Bad"
There were a few out there who could see nothing sexy about disability. One person noted that there were non-disability related things about him that his wife liked, but there were no physical, mental or emotional traits brought on by his disability that she likes (or that he liked, for that matter). "It’s all bad," he said.
While we cannot do much to change the physical, I have to believe there is hope to improve the mental and emotional outlook. Our choice of our outlook on life is one thing that is within our control, and sexy is in the eye of the beholder.
For those who have questioned how anyone can find them attractive with a disability, here is your answer! Partners do find us - including things about our disability - sexy! Disabled does not equal unattractive and disability has the potential to bring out some admirable qualities. Sometimes we don’t believe it when our own partner says we are still sexy because we may feel so different from people without disabilities or from ourselves, in the case of an acquired disability. I think it is affirming for everyone to hear partners’ perspectives.
Having a disability does not mean that you do not enjoy a sexual experience anymore.
Click here for more ideas of how to love yourself.
Subscribe to:
Posts (Atom)