For any of you who follow this blog, you have noted that we are a few days late in getting this posted.The reason is that I have been fulfilling caregiver responsibilities for the past week for my spouse who had a second hip replacement surgery. I bring this up only because whenever I have to interact with the healthcare system on a personal basis, it only magnifies the frustration and the dismay I feel for each of you who have serious and chronic problems and have to deal with this very broken system on a much more regular basis that do I. Serving as an advocate and on many days as a facilitator for those you who are patients here at NVC, has opened my eyes to the difficulty, the basic inequities, and the inhumanity that is built into our system. Dealing with it on a personal basis only confirms my frustration. While I have to commend some of the segments of care - there was a warm and caring surgical nurse, a terrific CRNA who took time and really paid attention to her patient, a MA who listened – but by far the most of the “care team” where much more concerned with filling out paper work and treating the disease/problem rather than treating the person. It is very easy to understand how and why so many errors occur when the emphasis is on process and not on the goal itself. How have we gotten to this point? Yes, the paper work is onerous, the repetition is a foolish waste of time and something that a portable medical record would fix – how about having the patient carry the record from one provider to the next and sign off on the transfers? How about taking into account the patient in some of the scheduling? It is our job to care for people but it seems we have forgotten that “people” are individuals, each with their own personalities, needs and wants. In our rush to protect ourselves from law suits, our rush to bill as much as we can, and perhaps even our rush to make sure we are able to disassociate ourselves from our fellow person’s suffering, have we turned our system of care into a mechanized, inhumane process. At the Neuro Vitality Center we are committed to each person who comes through our door – patient, caregiver, friend or family. Each person has value and worth and must be treated with the dignity they deserve. Expect this from us. Maybe someday you will be able to expect it from other providers. It is what we hope for each of you.
FEBRUARY 2019 NEWS IN PARKINSON’S
MEDCAL NEWS TODAY: Early signs of Parkinson’s disease are: Tremors –typically appear on one side of the body. May be very subtle.Difficulty walking –shuffling or irregular gaitCramped or small handwriting – micrographiaLoss of smell – hyposmia ( may be symptomatic of other conditions including Alz. and Huntington’s)Sleep problems – wide range of symptoms from insomnia to uncontrolled motion while sleepingPoor balance –may affect basal gangliaBradykinesia - slowness or absence of movementVocal Changes - changes in volume and qualityFacial masking – reduced ability to make facial expressionsStooping or hunched posture – may start bending forward due to muscle rigidityConstipation – a common non-motor symptom however, may have wide range of causesPsychological symptoms – the disease lowers the natural level of dopamine which can cause changes in mood and behaviorWeight loss – mild to moderateHaving any of these symptoms does not mean that one has Parkinson’s but anyone expressing any or multiples of these symptoms and is over 60, should seek the advice of their physician.
FEBRUARY 2019 NEWS IN STROKEJournal of Cachexia, Sarcopenia and Muscle:
Reports a study that finds the amount of skeletal muscle throughout the body declines after a stroke occurring equally in patients with and without limb paresis. 21% of patients had developed cachexia one year later meaning they had lost at least 5% of their body weight. Older patients with moderately severe stroke were particularly prone to developing cachexia.Exercise training is the most promising way to delay or prevent the progression of muscle wasting and may be a therapy option. Treatment options may also include dietary supplementation. Neuro-Optometric Rehabilitation Association International:To out of three stroke survivors will experience visual impairments related to their stroke. These may include diminished central or peripheral vision, eye movement abnormalities or visual perceptual defects. Patients may not be aware that balance issues are connected to vision.The most common visual complication is homonymous hemianopsia or a visual field defect on the same side of each eye accompanied by a visual midline shift. This shift can directly affect posture, balance and spatial orientation and it will significantly increase the risk of falls. Visual rehab can go a long way in maximizing the vision the patient has.
JANUARY 2019 BLOG
For Auld Lang Syne my friends, for time gone by…….each of our folks here can recall the exact moment of their stroke, of their injury or the moment a diagnosis of Parkinson’s or some other neurological disorder was delivered to them. Awakening to a new reality, the burden of a chronic disease, is a life changing event for you, for your family, for your loved ones. Even though your experience is unique, you are not the first, nor are you the only person going through the changes, the challenges and facing new mountains to climb and rivers to cross.No matter where you live, seek out help for your new journey. Even though there is not a Neuro Vitality Center in every town, there are organizations that offer pieces of what we do – physical therapies, occupational therapies, counseling, group activities. There are various types of organizations from Senior Centers to Community Centers to Adult Day Care Centers to PACE programs and even some home programs for those who are unable to get outside the house. There are organizations to help the disabled and the chronically ill providing transportation and socialization bringing you together with others to help share your experiences, challenges and mostly explore your way forward. Research your local services through your regional Office on Aging or with your local Hospital – social work department is the best place to start.So tip a cup of kindness for the times gone by and let’s look forward to 2019 – a new year and a new beginning for us to thrive in our new life making the most of every day.We here at the Neuro Vitality Center wish you and families a Happy New Year and especially thank all of you who join us here every day and make our lives so fulfilling.
JANUARY 2019 NEWS IN PARKINSON’S
FOX NewsArticle run this December discussing the initial diagnosis of PD with Michael J. Fox who has become a major force in raising money and awareness of PD. He was 29 when first told he had Parkinson’s and as he said, “ You’ve made a mistake – you’re not aware of who I am.” He quickly learned that PD does not care who you are and as he states in his own words, he was totally freaked out and ran from it. His response was to drink too much with the hope of obliterating it and making it go away. Fox admitted to himself that the diagnosis frightened him and after hitting bottom seeking help from a therapist assisted him in accepting a new life with Parkinson’s. He is now able to focus on each day and try to make it good. Neurodegeneration Challenge NetworkA new network launched by Facebook CEO Mark Zuckerberg and his wife, Priscilla Chan, will unite leading investigators from various biomedical fields, as well as biologists and physicians, in gaining insight into why neurodegenerative diseases such as Parkinson’s occur.The challenge is to support interdisciplinary collaborations and generate shared tools, resources and platforms to inspire a new approach to tackling neurodegenerative disease- on e that leverages the combined power of science and technology to accelerate progress toward clinical goals.
COMPASSIONATE, EFFECTIVE, AFFORDABLE CARE