Cruise for a Cause: Day Six
Feb. 17th, 2009 09:16 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
msf_staffThis morning, Dr. Rob Godsall looked over our crowd and asked "How many of you forgot you had MS while you were on this cruise, looking out at the ocean, or sitting with friend at dinner?"
Hands shot up around the room. "Take life for what it is," he said. "Give MS its due, but give yourself your due, too."
On this cruise, you can always find someone who knows how you are feeling, or who has been where you have been, from the symptoms that you didn't fully realize you were having, like trouble swallowing or speaking, to lifestages, like our group of younger cruisers who each have a parent with MS.
As our group heads back to Miami, all those points came together. Today’s speakers started with Dr. Godsall, who talked about the cognitive problems seen in MS, as well as depression. Loss of memory that is sometimes seen with MS isn't like dementia, he said. The information is still there, it is the pathways for transmitting them that are eroded. In the old lamp and cord analogy sometimes used with MS, the lamp is still on, he said.
Speech pathologist Bonnie Schaude picked up where Dr. Godsall left off, with a fascinating talk about the diversity of swallowing and speech problems affecting people with MS. It isn't all about articulation and aspiration, she reminded the group. Some of the most common speech and swallowing complaints seen in MS are choking on food or drink, feeling as if things are not being fully swallowed for fatigue while eating, and changes in vocal quality, emphasis and pitch.
There are comprehensive studies and therapies that can help with all types of problems, even if several are combined, she said, including changes in posture, being mindful of chewing and swallowing and strengthening exercises.
From day one of the cruise, our speakers and cruisers share strategies to help people with MS and their families improve their quality of life. While most of our sessions focus on the person with MS, one of the hardest topics to tackle is how MS affects the entire family.
Our last speakers today took on the challenge with grace. Dr. Karen Thrower, pediatrician and wife to MSF Senior Medical Advisor neurologist Ben Thrower, gave tips for talking about MS with your kids at any stage of life. Infants as young as six months can feel the tension in a household that is undergoing a major stressor, such as the illness of a parent, she said, while teens may rebel not only because of the loss of freedom a parent's illness may bring, but also because of fears they are not able to otherwise adequately express.
Katie Masterson, daughter of MSF Peer Counselor Jim Masterson, reminded us that those feelings don't end with adulthood. In a moving account of her own life growing up with a parent with MS, she said her own experiences moved her to reach out by forming a Facebook group for children of people with MS.
Although the 2009 Cruise for a Cause is almost at an end, we still have a lot of action to pack into one more day. Tomorrow, we'll get tips on dealing with insurance companies, and hear how to cope with bladder and bowel symptoms. Then it will be time for an open forum, where all of our cruisers will have a chance to ask questions of all our expert speakers. Then it will be off the boat and back to reality, at least until next year!
Hands shot up around the room. "Take life for what it is," he said. "Give MS its due, but give yourself your due, too."
On this cruise, you can always find someone who knows how you are feeling, or who has been where you have been, from the symptoms that you didn't fully realize you were having, like trouble swallowing or speaking, to lifestages, like our group of younger cruisers who each have a parent with MS.
As our group heads back to Miami, all those points came together. Today’s speakers started with Dr. Godsall, who talked about the cognitive problems seen in MS, as well as depression. Loss of memory that is sometimes seen with MS isn't like dementia, he said. The information is still there, it is the pathways for transmitting them that are eroded. In the old lamp and cord analogy sometimes used with MS, the lamp is still on, he said.
Speech pathologist Bonnie Schaude picked up where Dr. Godsall left off, with a fascinating talk about the diversity of swallowing and speech problems affecting people with MS. It isn't all about articulation and aspiration, she reminded the group. Some of the most common speech and swallowing complaints seen in MS are choking on food or drink, feeling as if things are not being fully swallowed for fatigue while eating, and changes in vocal quality, emphasis and pitch.
There are comprehensive studies and therapies that can help with all types of problems, even if several are combined, she said, including changes in posture, being mindful of chewing and swallowing and strengthening exercises.
From day one of the cruise, our speakers and cruisers share strategies to help people with MS and their families improve their quality of life. While most of our sessions focus on the person with MS, one of the hardest topics to tackle is how MS affects the entire family.
Our last speakers today took on the challenge with grace. Dr. Karen Thrower, pediatrician and wife to MSF Senior Medical Advisor neurologist Ben Thrower, gave tips for talking about MS with your kids at any stage of life. Infants as young as six months can feel the tension in a household that is undergoing a major stressor, such as the illness of a parent, she said, while teens may rebel not only because of the loss of freedom a parent's illness may bring, but also because of fears they are not able to otherwise adequately express.
Katie Masterson, daughter of MSF Peer Counselor Jim Masterson, reminded us that those feelings don't end with adulthood. In a moving account of her own life growing up with a parent with MS, she said her own experiences moved her to reach out by forming a Facebook group for children of people with MS.
Although the 2009 Cruise for a Cause is almost at an end, we still have a lot of action to pack into one more day. Tomorrow, we'll get tips on dealing with insurance companies, and hear how to cope with bladder and bowel symptoms. Then it will be time for an open forum, where all of our cruisers will have a chance to ask questions of all our expert speakers. Then it will be off the boat and back to reality, at least until next year!