HELP is at hand.
That is the message from the Louth and District Parkinson's Disease Society, a support group for those suffering from the disease and their families.
Chairman Michael Swift said: "We are trying to raise awareness that help is available to people and we welcome anybody from anywhere in North East Lincolnshire to get in touch.
"We have monthly meetings and lunch clubs, trips out and we also do a good deal of fundraising."
Parkinson's is a progressive neurological condition affecting movement including walking, talking and writing.
The group will meet again in January 2009, with a lunch club at the Wagon And Horses, in South Reston, near Louth, on January 15. There is also a table-top sale on Wednesday, November 26, at the Salvation Army Buildings, in Church Lane, Louth, from 11am.
For more information and resources about Parkinson's disease you can check out www.parkinsonresearchfoundation.org It's one of the most comprehensive websites on the internet for Parkinson's disease information.
Monday, July 20, 2009
Monday, July 13, 2009
Taking care of caregivers
Caregiving is exceedingly stressful and time consuming – and often leaves little energy for taking care of oneself.
The majority of caregivers are senior spouses of limited income and busy adult children with work and families to tend to.
Given those scenarios, it’s easy to see why so many caregivers wear out (and even die) before the loved ones they provide care for do.
Such compelling situations are behind why the Santa Clarita Valley Senior Center annually presents Caregiver Resource Day — a free community event aimed at lightening the load for caregivers through information, support, and tools for better self-care.
Approximately 175 people attended the June 20 seminar, which was funded in part through the Family Care Services of the Los Angeles County’s Area Agency on Aging.
With its title sponsor, Comfort Keepers In-Home Care, the event included enlightening speeches, a Pacifica Senior Living Santa Clarita-sponsored breakfast, care-giving related vendors, health screenings, and raffle prizes.
Hosted by the SCVSC’s Supportive Services Department, Caregiver Resource Day’s featured keynote speakers Joshua Grill, Ph.D., director of UCLA’s Mary S. Easton Center for Alzheimer’s Disease Research; James Makous, Ph.D., director of the Deep Brain Stimulation (DBS) Program for Parkinson’s at Boston Scientific Neuromodulation (BSN) in Valencia; and Judith Harris, M.A., M.F.T., psychotherapist, humorist, and facilitator of several SCVSC support groups, who also served as event moderator.
Alzheimer’s disease
An ultimately fatal, brain-destroying disease, Alzheimer’s affects 5.3 million Americans and accounts for 10 million unpaid family caregivers.
The No. 1 risk fact for developing AD is age.
“Medicine is helping people live longer lives, putting more people at risk to get Alzheimer’s,” said Dr. Grill, Associate Director of UCLA’s Deane F. Johnson Center for Neurotherapeutics.
“The number of people with AD is expected to triple in the coming decades, making it a national and international health care crisis.”
Research has made major advancements in recent decades to better understand this disease and what happens in the brains of patients afflicted, Grill noted.
“Two research goals currently predominate: moving diagnosis earlier, even before the beginning of symptoms, and developing new treatments that will slow the underlying disease process,” Grill stated.
“In combination, these two outcomes will let us essentially prevent the disease by identifying early and starting therapy to slow the pathological processes in the brain.”
Parkinson’s disease
Also a progressive brain disorder, Parkinson’s affects about 1.5 million Americans, impairing nerve cells, muscle function and movement. Symptoms include shaking (tremor), slowness in moving, stiffness, and balance difficulties. About 60,000 new cases are diagnosed annually.
Dr. Makous, who evaluates new technology within Boston Scientific’s Emerging Indications team, spoke about Deep Brain Stimulation (DBS). The procedure is successful in treating numerous movement disorders, including Parkinson’s and essential tremor. (The latter is a neurological disorder that causes uncontrollable shaking most frequently in hands or arms, but also in the head, voice, legs or trunk.)
With DBS, a small, surgically implanted, battery-operated medical device (similar to a pacemaker) delivers electrical stimulation to targeted areas in the brain.
This controls movement and blocks abnormal nerve signals produced by Parkinson’s and essential tremor. Makous presented a video in which renowned bluegrass musician Eddie Adcock underwent DBS to treat his disabling tremor — while strumming his banjo. As the procedure “fine-tuned” Adcock’s brain, tremors subsided and precise banjo playing resumed.
“We’ve had some amazing successes (with DBS),” said Registered Nurse Roberta Greenberg, Providence Saint Joseph clinical neurology manager. “The results are life-changing — patients can cut their medications, they suffer far fewer tremors and they regain motor skills. What’s really exciting about DBS is the potential for use in a range of disorders. Research is ongoing for applications in treating depression and even Alzheimer’s disease.”
Help for the caregiver
Finding humor and meaning in care-giving was the topic of Judith Harris’ talk titled, “We’re All Here Because We’re Not All There.”
Peppered with famous quotes and cartoons, Harris’s speech emphasized the importance of releasing guilt and self-blame, accepting the past, thinking optimistically, and spending time with people who make you happy.
Harris, a cancer survivor and SCVSC’s caregiver support group leader, included a gem from Rabbi Harold Kushner.
“Expecting the world to treat you fairly because you’re a good person is like expecting a bull not to attack because you’re a vegetarian,” Harris said.
Rose Di Benedetto, whose 83-year-old father Jose Hernandez has dementia and lives with her in Saugus, praised the event.
“It was very helpful,” she said. “I especially liked learning about resources for caregivers to come into the home. That’s good to know for when I have to go somewhere because I can’t always rely on my sons. They love their grandpa but sometimes they have things to do.”
Di Benedetto, herself a breast cancer survivor, said she appreciated Harris’ levity.
“I joke about everything. I have to,” she said.
Despite his normally sweet disposition, Hernandez can get agitated, which is common for people with dementia, the daughter said.
“My dad can get violent and raise his voice but that’s not him, it’s his illness,” she stated.
A stroke survivor with congestive heart failure, Hernandez attends the Senior Center’s Adult Day Care. The licensed program provides nurturing and social stimulation for people with Alzheimer’s, Parkinson’s, post-stroke or other conditions requiring constant supervision.
“He really likes it there,” Di Benedetto said. “It’s safe and they take good care of him.”
She also lauded day care for the respite it allows from caregiving.
“It gives me a break, and as much as I love my dad, that means a lot to me,” the daughter said.
The majority of caregivers are senior spouses of limited income and busy adult children with work and families to tend to.
Given those scenarios, it’s easy to see why so many caregivers wear out (and even die) before the loved ones they provide care for do.
Such compelling situations are behind why the Santa Clarita Valley Senior Center annually presents Caregiver Resource Day — a free community event aimed at lightening the load for caregivers through information, support, and tools for better self-care.
Approximately 175 people attended the June 20 seminar, which was funded in part through the Family Care Services of the Los Angeles County’s Area Agency on Aging.
With its title sponsor, Comfort Keepers In-Home Care, the event included enlightening speeches, a Pacifica Senior Living Santa Clarita-sponsored breakfast, care-giving related vendors, health screenings, and raffle prizes.
Hosted by the SCVSC’s Supportive Services Department, Caregiver Resource Day’s featured keynote speakers Joshua Grill, Ph.D., director of UCLA’s Mary S. Easton Center for Alzheimer’s Disease Research; James Makous, Ph.D., director of the Deep Brain Stimulation (DBS) Program for Parkinson’s at Boston Scientific Neuromodulation (BSN) in Valencia; and Judith Harris, M.A., M.F.T., psychotherapist, humorist, and facilitator of several SCVSC support groups, who also served as event moderator.
Alzheimer’s disease
An ultimately fatal, brain-destroying disease, Alzheimer’s affects 5.3 million Americans and accounts for 10 million unpaid family caregivers.
The No. 1 risk fact for developing AD is age.
“Medicine is helping people live longer lives, putting more people at risk to get Alzheimer’s,” said Dr. Grill, Associate Director of UCLA’s Deane F. Johnson Center for Neurotherapeutics.
“The number of people with AD is expected to triple in the coming decades, making it a national and international health care crisis.”
Research has made major advancements in recent decades to better understand this disease and what happens in the brains of patients afflicted, Grill noted.
“Two research goals currently predominate: moving diagnosis earlier, even before the beginning of symptoms, and developing new treatments that will slow the underlying disease process,” Grill stated.
“In combination, these two outcomes will let us essentially prevent the disease by identifying early and starting therapy to slow the pathological processes in the brain.”
Parkinson’s disease
Also a progressive brain disorder, Parkinson’s affects about 1.5 million Americans, impairing nerve cells, muscle function and movement. Symptoms include shaking (tremor), slowness in moving, stiffness, and balance difficulties. About 60,000 new cases are diagnosed annually.
Dr. Makous, who evaluates new technology within Boston Scientific’s Emerging Indications team, spoke about Deep Brain Stimulation (DBS). The procedure is successful in treating numerous movement disorders, including Parkinson’s and essential tremor. (The latter is a neurological disorder that causes uncontrollable shaking most frequently in hands or arms, but also in the head, voice, legs or trunk.)
With DBS, a small, surgically implanted, battery-operated medical device (similar to a pacemaker) delivers electrical stimulation to targeted areas in the brain.
This controls movement and blocks abnormal nerve signals produced by Parkinson’s and essential tremor. Makous presented a video in which renowned bluegrass musician Eddie Adcock underwent DBS to treat his disabling tremor — while strumming his banjo. As the procedure “fine-tuned” Adcock’s brain, tremors subsided and precise banjo playing resumed.
“We’ve had some amazing successes (with DBS),” said Registered Nurse Roberta Greenberg, Providence Saint Joseph clinical neurology manager. “The results are life-changing — patients can cut their medications, they suffer far fewer tremors and they regain motor skills. What’s really exciting about DBS is the potential for use in a range of disorders. Research is ongoing for applications in treating depression and even Alzheimer’s disease.”
Help for the caregiver
Finding humor and meaning in care-giving was the topic of Judith Harris’ talk titled, “We’re All Here Because We’re Not All There.”
Peppered with famous quotes and cartoons, Harris’s speech emphasized the importance of releasing guilt and self-blame, accepting the past, thinking optimistically, and spending time with people who make you happy.
Harris, a cancer survivor and SCVSC’s caregiver support group leader, included a gem from Rabbi Harold Kushner.
“Expecting the world to treat you fairly because you’re a good person is like expecting a bull not to attack because you’re a vegetarian,” Harris said.
Rose Di Benedetto, whose 83-year-old father Jose Hernandez has dementia and lives with her in Saugus, praised the event.
“It was very helpful,” she said. “I especially liked learning about resources for caregivers to come into the home. That’s good to know for when I have to go somewhere because I can’t always rely on my sons. They love their grandpa but sometimes they have things to do.”
Di Benedetto, herself a breast cancer survivor, said she appreciated Harris’ levity.
“I joke about everything. I have to,” she said.
Despite his normally sweet disposition, Hernandez can get agitated, which is common for people with dementia, the daughter said.
“My dad can get violent and raise his voice but that’s not him, it’s his illness,” she stated.
A stroke survivor with congestive heart failure, Hernandez attends the Senior Center’s Adult Day Care. The licensed program provides nurturing and social stimulation for people with Alzheimer’s, Parkinson’s, post-stroke or other conditions requiring constant supervision.
“He really likes it there,” Di Benedetto said. “It’s safe and they take good care of him.”
She also lauded day care for the respite it allows from caregiving.
“It gives me a break, and as much as I love my dad, that means a lot to me,” the daughter said.
Helping your Parkinson’s Client with Frozen Gait
Some clients with Parkinson’s disease (PD) may experience difficulty moving from one piece of Pilates equipment to another after completing an exercise. This inability to propel the feet is a symptom of PD and is commonly referred to as “frozen gait.” With most clients, their unconscious mind gives them the commands necessary for their body to move and perform the next action. With PD, this automatic feature can sometimes be interrupted.
Fortunately, we often can help our client “reboot” the system with a conscious command originating from another part of the brain. Once the body makes the first move, another part of the brain takes over for locomotion—like the jumpstart of a car battery getting the engine going again.
Mayo Clinic Parkinson Specialist J. Eric Ahlskog, Ph.D., M.D. provides some possible suggestions you may make to your client in The Parkinson’s Disease Treatment Book:
* Swing one leg forward. Think about swinging the leg rather than walking. Start with a long leg swing that will place that leg far in front of you (but not so far that you fall).
* Try goose-stepping. This was the marching gait of German soldiers. They would stiffly lock their knees and march by taking long stiff steps. Envision what they looked like and keep this thought as you take your first step.
* Think about a drum major’s marching step, raising one leg straight up off the ground before placing it forward. Envision that same movement when you get stuck.
* Think about a drill sergeant’s marching cadence: “one-two, one-two, one-two…” You might even count out loud. This might get you started and help you mentally envision a marching step.
* Thinking of a certain musical tune may be helpful. For example, a gliding first step may come more easily if you hum “Blue Danube” in your mind and imagine a ballroom dancer gliding in that same way. A boogie or rock and roll tune that brings a dance step to mind may also work.
* Find a target on the floor and step on it. Sometimes people imagine they are stepping on a fly in front of them. Look for an imaginary fly on the ground and try to crush it; this may get your gait started.
* A variation on this involves using a laser pointer to create a target to step on. If you point the laser light 1-2 feet in front of you and then think about stepping on that tiny lighted spot that may get you going. Laser pointers are used by professors and lecturers and may be purchased at bookstores.
Consult with your client to see what tool works best. After your client begins moving, it is also common for a PD client to have difficulty maintaining the tempo, or to freeze again upon slowing down or stopping. One of my clients will put his hand on his wife’s shoulder when they are walking together to maintain a sense of rhythm in his gait, which he at times loses on his own. Impressively, he still skis and will count the ski lift towers and sing a song to himself like “one, two, three…and” to get ready to initiate push off from the ski lift and transfer his weight over his legs. This counting also becomes useful in Pilates exercises, such as with leg circles in the straps on the Reformer, to maintain fluid movement. If you think that your client is experiencing inconsistent or stilted movement, try leading with your voice “circle down 1,2,3,4, circle up 1,2,3,4” to maintain the rhythmic feel.
Despite all your clever tricks, sometimes nothing works. When this happens, it is often a medication issue. Your client generally knows from taking medication when “on” and “off” efficacy times occur relative to the dosage and the time the medication was taken. Schedule your appointments based on medication peak performance to get the most out of a session.
Brent Anderson PhD, PT, OCS of Polestar Pilates has a great recommendation for working with PD clients. He suggests that you provide a, “successful movement experience that exceeds their expectation.” PD clients may not always have the perfect Pilates form, but acknowledging and praising what they can do will empower them to recognize their own accomplishments and strive for success in the future.
A working relationship with a PD client can be challenging for a Pilates instructor, but it is extremely rewarding when your client experiences improved function. Understanding the common symptoms, such as freezing gait, can help you know what to expect and to work with greater patience.
Fortunately, we often can help our client “reboot” the system with a conscious command originating from another part of the brain. Once the body makes the first move, another part of the brain takes over for locomotion—like the jumpstart of a car battery getting the engine going again.
Mayo Clinic Parkinson Specialist J. Eric Ahlskog, Ph.D., M.D. provides some possible suggestions you may make to your client in The Parkinson’s Disease Treatment Book:
* Swing one leg forward. Think about swinging the leg rather than walking. Start with a long leg swing that will place that leg far in front of you (but not so far that you fall).
* Try goose-stepping. This was the marching gait of German soldiers. They would stiffly lock their knees and march by taking long stiff steps. Envision what they looked like and keep this thought as you take your first step.
* Think about a drum major’s marching step, raising one leg straight up off the ground before placing it forward. Envision that same movement when you get stuck.
* Think about a drill sergeant’s marching cadence: “one-two, one-two, one-two…” You might even count out loud. This might get you started and help you mentally envision a marching step.
* Thinking of a certain musical tune may be helpful. For example, a gliding first step may come more easily if you hum “Blue Danube” in your mind and imagine a ballroom dancer gliding in that same way. A boogie or rock and roll tune that brings a dance step to mind may also work.
* Find a target on the floor and step on it. Sometimes people imagine they are stepping on a fly in front of them. Look for an imaginary fly on the ground and try to crush it; this may get your gait started.
* A variation on this involves using a laser pointer to create a target to step on. If you point the laser light 1-2 feet in front of you and then think about stepping on that tiny lighted spot that may get you going. Laser pointers are used by professors and lecturers and may be purchased at bookstores.
Consult with your client to see what tool works best. After your client begins moving, it is also common for a PD client to have difficulty maintaining the tempo, or to freeze again upon slowing down or stopping. One of my clients will put his hand on his wife’s shoulder when they are walking together to maintain a sense of rhythm in his gait, which he at times loses on his own. Impressively, he still skis and will count the ski lift towers and sing a song to himself like “one, two, three…and” to get ready to initiate push off from the ski lift and transfer his weight over his legs. This counting also becomes useful in Pilates exercises, such as with leg circles in the straps on the Reformer, to maintain fluid movement. If you think that your client is experiencing inconsistent or stilted movement, try leading with your voice “circle down 1,2,3,4, circle up 1,2,3,4” to maintain the rhythmic feel.
Despite all your clever tricks, sometimes nothing works. When this happens, it is often a medication issue. Your client generally knows from taking medication when “on” and “off” efficacy times occur relative to the dosage and the time the medication was taken. Schedule your appointments based on medication peak performance to get the most out of a session.
Brent Anderson PhD, PT, OCS of Polestar Pilates has a great recommendation for working with PD clients. He suggests that you provide a, “successful movement experience that exceeds their expectation.” PD clients may not always have the perfect Pilates form, but acknowledging and praising what they can do will empower them to recognize their own accomplishments and strive for success in the future.
A working relationship with a PD client can be challenging for a Pilates instructor, but it is extremely rewarding when your client experiences improved function. Understanding the common symptoms, such as freezing gait, can help you know what to expect and to work with greater patience.
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