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edriscoll

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About edriscoll

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  • Birthday November 14

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    Female
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    New Hampshire
  • Interests
    gardening, painting, cooking, sewing, reading, creating art with a variety of materials

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  1. April is National Volunteer Month. DINET is 100% staffed by volunteers; volunteers who generously give some of their precious spoons to DINET so we have this community here when we need it most. Please take a moment to join me in thanking these amazing volunteers. DINET's volunteer staff: (They are listed by their member names to respect their privacy but also so that you can reach out to them on the forum if you would like to) Forum Volunteers: MomtoGuiliana Clb75 Missy M Pistol Board of Directors & Newsletter WinterSown Goldstec Edriscoll Hallie Amy Keys reannamathis Mona Social Media LaurenMlack Thank you all from all of us!
  2. I also have temperature swings so radical that I am frequently walking around the house in a sleeveless shirt with a zippered hoodie on but pulled down around my elbows. This gives me the option of getting warm quickly but cooling down quickly as well. Some days are fine but I always need to be aware of overheating and be able to respond quickly. If you are not sweating, you need to discuss that with your doctor right away. Also, remember that when you do sweat you are losing a lot of fluid and sodium, so electrolyte-rich drinks are important. One item that I discovered that has been a life saver for me, especially in the summer months, are cooling towels. They are available online or in most sporting goods stores. They are lightweight towels that come in different sizes. They stay cool and can be worn around your neck (my fave), wrapped around your head like a bandana or just used to cool your face and wrists (pressure points). There are also cooling vests that keep your core cool. I haven't used one myself, but I have heard from several people that they work quite well. But again, if you are not sweating, please consult with your doctor. Dressing in layers and taking precautions is important. Temperature dysregulation is a common symptom and can be a distressful one. But there are ways to handle it and it will get better.
  3. T H R I V I N G... 5 Tips for Traveling with Dysautonomia by Chelsea Goldstein Finding Workarounds by Amy Keys Technology and Chronic Illness by Reanna Mathis Living with Hyperadrenergic POTS: A Personal Story by Susanne Rimm Finding Balance by Trudi Davidoff Meet the Member: Isabelle's Story by Chelsea Goldstein Medical Q & A - Your Questions answered by DINET's Medical Advisors Updated - Open Recruitment Studies Updated - Research and News about Dysautonomia and related Chronic Illnesses Celebrating our Volunteers: Melissa Milton: 2018 Rare Artist Contest brings Awareness to Dysautonomia Lauren Mlack: Meet DINET's Social Media Coordinator
  4. We welcome your letters to DINET's Medical Advisors. Please be aware that the information provided is not meant to be a diagnosis or medical advice. It is provided to give you background information to discuss with your medical team and general information to keep you well informed about dysautonomia disorders. If you have a question for our advisors, please send to webmaster@dinet.org Question from member FIONA: I have been recently diagnosed with Dysautonomia following many years of periodic symptoms. I don’t fit into any specific category at the moment although I also suffer from adrenaline surges which suggest an overactive SNS. My body literally crashed last September and I have been desperately trying to deal with my daily symptoms since then. My TTT showed unstable fluctuations in my BP although I didn’t pass out. I still await blood results for lying/standing norepinephrine levels. I’m emailing your team as my most worrisome and debilitating symptoms are now from Orthostatic headaches. Once upright, I quickly feel discomfort/pressure/pain in the back of my neck and head. This intensifies and I then feel weak in my extremities, slightly nauseous and need to lie down immediately. If I don’t lie down fast enough, my SNS triggers adrenaline surges which spike my BP, raise my HR, flush my face and cause me to feel terror as if my head will explode. The intensity and duration of these surges is unpredictable and I always feel exhausted afterward. I’m especially concerned as my ability to remain upright has slowly decreased over the past few weeks due to this headache issue. It’s now difficult to even walk a few steps without the head pressure feeling. In addition, I have suffered from painful shoulder muscles for many years. My other Dysautonomia symptoms wax and wane but this is quite unbearable. I also suffer from migraines and am perimenopausal. Have you a likely explanation for why these headaches are occurring? Is my brain simply starved of oxygen? I’m guessing that my SNS is then acting in an overcompensatory manner? Have you any advice on coping mechanisms? I just don’t know what my new normal is or how to begin to work through this. Any help/advice greatly appreciated. Answer from Dr. Satish Raj: I am sorry to hear you are unwell. Headaches are commonly seen in patients with various autonomic disorders, and they can be difficult to manage. I do not think that these are due to the brain not getting enough oxygen. That can lead to loss of consciousness and not "pain". I would suggest that it is important to make sure that your BP is adequately supported. If you are dropping your BP or perfusion, that could certainly account for the shoulder pain on standing and maybe head/neck pain. Another consideration is that there are some patients that can develop spontaneous leaks of their cerebrospinal fluid. The headaches are like "spinal headaches" that people can experience sometimes after epidurals that go poorly. These can be hard to diagnose, but one can start by looking at an MRI of the brainstem and occasionally doing a myelogram (contrast into the spinal canal to look for leaks). The treatment often starts with attempts at a "blood patch" (blood injection into the spinal canal to try to clot and "patch" the hole). Unfortunately, they are often less effective in this condition with the spontaneous leaks than in patients where a needle caused the hole. Some patients also get better for several days and then get worse again. However, some do get better. Dr. Satish Raj Dr. Satish R. Raj MD, MSCI, FPCPC Associate Professor of Cardiac Sciences Libin Cardiovascular Institute of Alberta University of Calgary | Vanderbilt University Question from member Jan: My cardiologist said I have dysautonomia. My BP is both very low with passing out or very high eg 220/125. In the last 12 months, my high BP has caused some heart damage, left ventricular thickening, left atrial enlargement, mitral valve regurgitation. A geneticist last year said I meet all the criteria for EDS hypermobility Syndrome with the exception of high as well as low bp. I also have chronic secretory diarrhea which appears to have some autonomic component. This does not match the criteria for EDS. Had a normal nerve conduction test. My problem is how to treat labile bp so that treatment doesn’t worsen passing out. My treatment at present is to take a small amount of short-acting bp reducing medicine if bp over 180 sustained for 1 hour, max 3in one day. However, on the occasion, I took two in one day I was on the floor and bp extremely low for hours. Most information on dysautonomia is about dropping bp. Are you aware of my problem and any advice on management? Answer from Dr. Nicholas Tullo: The term “dysautonomia” includes many different disturbances of the part of the nervous system that controls heart rate and blood pressure. However, many factors affect blood pressure other than the autonomic nervous system. These factors include the total amount of blood and fluid in your circulatory system, the strength of your heart’s contraction, and the health of your venous system. The veins become an important issue because a significant portion of a person’s circulating blood volume can wind up pooled in the veins of the legs and even the lower abdominal cavity. The body’s ability to maintain a normal blood pressure depends heavily on how much blood is getting back to the heart since the heart has to be able to fill properly (“what goes in must come out”). When most of the blood is in the “wrong place” (stuck in the lower parts of the body) the blood pressure can drop dramatically. Chronic diarrhea represents an excessive amount of fluid loss that tips the scales towards being a little dehydrated, which just compounds the problem. Hypertension may be a manifestation of age (stiff blood vessels) and “essential hypertension,” which is probably a genetic abnormality in the hormonal control of blood vessel constriction. Ultimately, maintaining an adequate fluid intake is key to avoiding hypotension. People with blood pressure instability should be taking in at least 2-3 liters of fluid per day (maybe more). Having EDS may affect the elasticity of the veins and exaggerate the pooling that goes on when a person stands up for more than a few minutes. External ways to reduce blood pooling includes thigh-high or waist-high compression hose or abdominal binders. They can make a big difference. Hypertension needs to be treated with medications because of the potential organ damage that comes with excessively high blood pressures. Unfortunately, there is no one medication that solves the problem, and many patients with such an unstable blood pressure have to monitor it closely and make day-to-day adjustments in their meds (like you are doing). It is very important to avoid hypertension at night during sleep, since that induces an increase in urine production at night, leading to very wide blood pressure changes in the early morning hours. Sleeping with the head of your bed elevated 4-6 inches may help reduce nighttime urine production as well. Sometimes it’s a juggling act to have to take medications like fludrocortisone and midodrine to prevent hypotension, but taking hypertension meds… usually something long-acting in the morning and perhaps short-acting like nifedipine or nitrates to take later on if the blood pressure gets too high. You need to find a doctor nearby who is willing to work with you and help you devise a medication strategy that will help you keep your blood pressure in an acceptable range. Generally, daytime blood pressures in the 140-160 mmHg range may be reasonable in patients who are prone to severe orthostatic drops in order to avoid symptoms such as fainting. Best of luck! Nicholas G. Tullo, MD, FACC, FHRS New Jersey Center for Fainting njfaint.com Question from member Megan: Hello there! I wanted to ask a question about Beta Blockers use and Dysautonomia. We have malfunctions of our Autonomic Nervous System and my understanding is that Beta Blockers may increase the amount of Beta-Adrenergic receptors. It seems as though this would then make it more difficult to ever withdraw the Beta Blockers because withdrawal would cause a massive adrenergic response until the receptors down-regulated. It would make it difficult to know when Beta Blockers were no longer needed. The Nervous System is already not functioning properly and then it is stressed even more when the medication is withdrawn. What are your thoughts on that? Answer from Dr. Svetlana Blitshteyn: Beta-blockers may cause an indirect upregulation of the beta-adrenergic receptors in response to blocking of the beta receptors, but in our experience, beta blockers are excellent for many patients with POTS, chronic headache, anxiety, chest pain and intermittent tachycardia at rest. We have not observed patients having difficulty weaning off or stopping beta blockers when their symptoms no longer necessitate the use of beta blockers. Dysautonomia is not a static disorder; it can change in the type and severity of symptoms over a period of months to years. Many patients may use beta blockers for extended periods of time, then wean off or switch to other medications if the use of beta blockers is no longer needed or preferred. We have not observed major deterioration in symptoms when a decision to stop or wean off beta blockers is made appropriately by the specialist and the patient. Sincerely, Dr. Blitshteyn Svetlana Blitshteyn, MD Director and Founder of Dysautonomia Clinic and Amherst Neurology Clinical Assistant Professor of Neurology University at Buffalo School of Medicine and Biomedical Sciences Phone: 716-531-4598 Fax: 716-478-6917 http://www.dysautonomiaclinic.com Return to 02/2019 Table of Contents
  5. Meet the woman behind the Survey Sunday feature on DINET's Facebook page. Lauren also is one of the volunteers posting articles about living with dysautonomia and chronic illness. Meet one of DINET's most valued volunteers. Lauren lives in Cleveland, OH with her wonderful parents and Goldendoodle, Riley. She loves cooking, baking, crafting and making metal jewelry in her spare time. When she was little, she was always having health issues that would come and go randomly and cause lots of fatigue. Her mom kept pushing for an answer after going to countless specialists. Finally, when she was 12, she had a tilt table test which diagnosed her with POTS. After having to leave public school and switch to online schooling due to her health, she was finally feeling well enough almost a decade later to attend a local community college. Lauren recently was able to achieve an Associate’s degree in graphic design. She is very excited that she can use her skills to help a great cause like DINET. Editor's Note: Over the next few months, Lauren will be preparing a new video feature for DINET's Youtube channel. The feature will focus on a great variety of subjects. If you have a topic that you would love to hear more about or would like to see DINET cover, email: webmaster@dinet.org Above: Lauren and her Goldendoodle, Riley Return to 02/2019 Table of Contents
  6. I'm so sorry to hear you are going through all of that. Medical issues can be so overwhelming and especially so when there are multiple issues going on at the same time. I hope you get some relief soon and some answers. Hospitals all have social work departments that have patient advocates that can really help you speak to the doctors and sort out what the priorities should be for your care. They can also help with things like rides to appointments. If you haven't done so, you may want to call the hospital where you are having your testing done or where the majority of your doctors are and explain that you don't have family available and you need help. Telling them the story you have shared with us, may help you get the assistance you need. I hope you get help soon and find some relief from your pain. Take care.
  7. Dysautonomia is an umbrella term used to describe a collection of disorders related to the dysfunction of the Autonomic Nervous System (ANS). So to understand dysautonomia, it begins with understanding how the ANS works. The autonomic nervous system regulates certain processes that occur automatically within the body, without a person's conscious effort to make them work. These processes are things like breathing, heart rate, and blood pressure. When the autonomic nervous system doesn't work correctly (dysfunctions) it can affect any body part or process. These disorders may be reversible or they may progressively worsen over time. The ANS is the part of the nervous system responsible for the function of our blood vessels, stomach, intestines, liver, kidneys, bladder, genitals, lungs, pupils, heart and sweat,, salivary and digestive glands. It is easy to see how debilitating disorders of the ANS can be since they affect so many parts of the body. The autonomic nervous system has two main divisions: Sympathetic Parasympathetic Both of these divisions are affected when the ANS is not working properly. To understand this better, it is important to understand how this works within the body. When a signal is received by the ANS from the body and the environment, it responds by stimulating processes within the body, usually through the sympathetic portion of the ANS, or it inhibits a process through the parasympathetic division of the ANS. For example; the heat in a room gets turned up. This is an external message that is received by the ANS within the body. A properly functioning ANS would respond by sending a signal causing the body to sweat. This would be a natural reaction to received stimuli. The processes the ANS are responsible for are: Blood pressures Heart rate and respiration (breathing) Body temperature Digestion Metabolism (affects weight) The balance of water & electrolytes (affecting sodium & calcium levels) Production of body fluids (affecting saliva, sweat & tears) Urination Defecation Sexual response One of the more challenging aspects to understand is that although many organs are controlled primarily by the sympathetic or parasympathetic divisions, sometimes the two divisions can have opposite effects on the same organ. For example, the sympathetic division increases blood pressure, and the parasympathetic division decreases it. Overall, the two divisions work together to ensure the body responds appropriately to different situations. (Low, Dec 2018) The sympathetic division prepares the body for stress and emergency situations - Fight or Flight. The fight or flight mechanism increases the heart rate and blood pressure (the force that the heart contracts) it dilates (widens) the airways making breathing easier. It causes the body to release stored energy and muscular strength is increased. It also causes your palms to sweat, pupils to dilate and your hair to stand on end. It slows down the processes within the body that are less important in an emergency, like digestion and urination. (Low, Dec 2018) On the other hand, the parasympathetic division controls the processes in the body during ordinary situations. Generally, it conserves and restores. It slows the heart rate and decreases blood pressure. It stimulates digestion causing the body to process food and eliminate waste. It uses energy from processed food to restore and build body tissue. Two chemical messengers (neurotransmitters) are used to communicate within the autonomic nervous system: Acetylcholine Norepinephrine Nerve fibers that secrete acetylcholine are called cholinergic fibers. Fibers that secrete norepinephrine are called adrenergic fibers. Generally, acetylcholine has parasympathetic (inhibiting) effects and norepinephrine has sympathetic (stimulating) effects. However, acetylcholine has some sympathetic effects. For example, it sometimes stimulates sweating or makes the hair stand on end. (Low, Dec 2018) The role of cholinergic and adrenergic fibers continues to be studied in dysautonomia research and particularly the role they play in the ANS function of POTS patients. Conclusion Dysautonomia is the dysfunction of the autonomic nervous system. Because the ANS does not respond correctly to the messages it receives, it results in the misfiring of the processes described above. The causes of dysautonomia are not always known. It is important to understand that although there are patients who develop dysautonomia disorders as their primary illness, there are many more who develop dysautonomia disorders secondary to other illnesses that cause the dysfunction of the ANS, such as Parkinson's Disease, EDS, Spinal Cord trauma or Brain Injury, and many others. Follow this link to read more about the mechanisms within the body associated with various types of dysautonomia disorders, Explore the Information Resources section of this site to learn more about specific disorders related to the dysfunction of the ANS. RESOURCES Phillip Low, MD, Professor of Neurology, College of Medicine, Mayo Clinic; Consultant, Department of Neurology, Mayo Clinic updated December 2018 Merck Manual, Consumer Edition, full text https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/ Image: https://www.merckmanuals.com/home/brain,-spinal-cord,-and-nerve-disorders/autonomic-nervous-system-disorders/overview-of-the-autonomic-nervous-system
  8. Dysautonomia is an umbrella term used to describe a collection of disorders related to the dysfunction of the Autonomic Nervous System (ANS). So to understand dysautonomia, it begins with understanding how the ANS works. The autonomic nervous system regulates certain processes that occur automatically within the body, without a person's conscious effort to make them work. These processes are things like breathing, heart rate, and blood pressure. When the autonomic nervous system doesn't work correctly (dysfunctions) it can affect any body part or process. These disorders may be reversible or they may progressively worsen over time. The ANS is the part of the nervous system responsible for the function of our blood vessels, stomach, intestines, liver, kidneys, bladder, genitals, lungs, pupils, heart and sweat,, salivary and digestive glands. It is easy to see how debilitating disorders of the ANS can be since they affect so many parts of the body. The autonomic nervous system has two main divisions: Sympathetic Parasympathetic Both of these divisions are affected when the ANS is not working properly. To understand this better, it is important to understand how this works within the body. When a signal is received by the ANS from the body and the environment, it responds by stimulating processes within the body, usually through the sympathetic portion of the ANS, or it inhibits a process through the parasympathetic division of the ANS. For example; the heat in a room gets turned up. This is an external message that is received by the ANS within the body. A properly functioning ANS would respond by sending a signal causing the body to sweat. This would be a natural reaction to received stimuli. The processes the ANS are responsible for are: Blood pressures Heart rate and respiration (breathing) Body temperature Digestion Metabolism (affects weight) The balance of water & electrolytes (affecting sodium & calcium levels) Production of body fluids (affecting saliva, sweat & tears) Urination Defecation Sexual response One of the more challenging aspects to understand is that although many organs are controlled primarily by the sympathetic or parasympathetic divisions, sometimes the two divisions can have opposite effects on the same organ. For example, the sympathetic division increases blood pressure, and the parasympathetic division decreases it. Overall, the two divisions work together to ensure the body responds appropriately to different situations. (Low, Dec 2018) The sympathetic division prepares the body for stress and emergency situations - Fight or Flight. The fight or flight mechanism increases the heart rate and blood pressure (the force that the heart contracts) it dilates (widens) the airways making breathing easier. It causes the body to release stored energy and muscular strength is increased. It also causes your palms to sweat, pupils to dilate and your hair to stand on end. It slows down the processes within the body that are less important in an emergency, like digestion and urination. (Low, Dec 2018) On the other hand, the parasympathetic division controls the processes in the body during ordinary situations. Generally, it conserves and restores. It slows the heart rate and decreases blood pressure. It stimulates digestion causing the body to process food and eliminate waste. It uses energy from processed food to restore and build body tissue. Two chemical messengers (neurotransmitters) are used to communicate within the autonomic nervous system: Acetylcholine Norepinephrine Nerve fibers that secrete acetylcholine are called cholinergic fibers. Fibers that secrete norepinephrine are called adrenergic fibers. Generally, acetylcholine has parasympathetic (inhibiting) effects and norepinephrine has sympathetic (stimulating) effects. However, acetylcholine has some sympathetic effects. For example, it sometimes stimulates sweating or makes the hair stand on end. (Low, Dec 2018) The role of cholinergic and adrenergic fibers continues to be studied in dysautonomia research and particularly the role they play in the ANS function of POTS patients. Conclusion Dysautonomia is the dysfunction of the autonomic nervous system. Because the ANS does not respond correctly to the messages it receives, it results in the misfiring of the processes described above. The causes of dysautonomia are not always known. It is important to understand that although there are patients who develop dysautonomia disorders as their primary illness, there are many more who develop dysautonomia disorders secondary to other illnesses that cause the dysfunction of the ANS, such as Parkinson's Disease, EDS, Spinal Cord trauma or Brain Injury, and many others. Follow this link to read more about the mechanisms within the body associated with various types of dysautonomia disorders, Explore the Information Resources section of this site to learn more about specific disorders related to the dysfunction of the ANS. RESOURCES Phillip Low, MD, Professor of Neurology, College of Medicine, Mayo Clinic; Consultant, Department of Neurology, Mayo Clinic updated December 2018 Merck Manual, Consumer Edition, full text https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/ Image: https://www.merckmanuals.com/home/brain,-spinal-cord,-and-nerve-disorders/autonomic-nervous-system-disorders/overview-of-the-autonomic-nervous-system
  9. DINET collects relevant research related to dysautonomia disorders and related conditions & illnesses. This is in no way meant to be a complete list of all research currently underway or the results of research currently made public. But it is a summary of key research studies that we hope are relevant and potentially important to our members' ongoing treatment and prognosis. Please check back as this page is regularly updated. Updated Info: Dr. Raj and associate, Dr. Miller's updated article about the pharmacotherapy for POTS. Pub. May 2018 in Science Direct, Autonomic Neuroscience. https://www.sciencedirect.com/science/article/pii/S1566070218300250 NEW: An examination of whether the impairment of the Corticol Autonomic Network (CAN) of the brain is involved int the psysiology of Neurogenic Orthostatic Hypotension (NOH) Pub. Oct 2018 https://www.ncbi.nlm.nih.gov/pubmed/30332348 NEW RESULTS: The need for specific diagnosis and treatment for patients labeled with CFS and Fibromyalgia. Important research results from one of DINET's Medical Advisors, Dr. Svetlana Blitshteyn and her colleague, Pradeep Chopra, Pub date Oct 2018 Read full article: 2018CFS_Fibromyalgia_ChronicPain_PubKarger.pdf Updated info from the CDC on HPV Vaccine safety for POTS patients https://www.cdc.gov/vaccinesafety/vaccines/hpv/hpv-safety-faqs.html Follow up to: HPV Vaccine and POTS - https://www.ncbi.nlm.nih.gov/pubmed/28689455 Complex Regional Pain Syndrome, Type 1 - Diagnosis and management. https://www.ncbi.nlm.nih.gov/pubmed/29409405?_ga=2.71311891.1204982470.1531704876-989465291.1526426607 Study results: A presentation made by the American Association for Cancer Research at their annual meeting reported findings related to health risks in post-menopausal women using medication for high blood pressure. The report claims an increased risk of pancreatic cancer in post-menopausal women using short-acting calcium channel blocking medications for their blood pressure treatment. Read the information from the AACR. Study results: NE Journal of Medicine releasing study results for episodic migraine treatment using Erenunab. The publication is reporting a 50% or greater reduction in the average number of migraine days per month. Read more about this study Study results: Physical maneuvers are viewed as important and promising strategies for reducing recurring episodes of syncope in vasovagal syncope patients. Read the result of the study published Jan. 2018 Study results: University of Alberta & McGill University release their findings for a new therapeutic agent that may hold the potential for the prevention of MS Article synopsis: https://bit.ly/2GhF5FK Research Article: https://insight.jci.org/articles/view/98410 Study results: Could gut bacteria be the key to preventing autoimmune disorders? Researchers from Yale, New Haven, CT are reporting that discovery that bacteria in the small intestine can travel to other organs and induce an autoimmune response. They also are reporting that antibiotic treatment or vaccine may be the key to combating this reaction. The study results were originally published in the journal Science. This article from Medical News Today gives a synopsis of the findings and links to the full study. https://www.medicalnewstoday.com/articles/321157.php Genomics and Health Impact Blog - a discussion about gene testing from the CDC There have been enormous contributions towards disease prevention in women's health, in particular, the development of consumer testing for the BRCA gene. The benefits cannot be applauded enough. However, health protection & research organizations like the CDC, are increasingly warning consumers about the need for professional counsel when interpreting results. This article, humorously entitled "Think before you spit" tempers the amazing breakthroughs with the cautionary information we need to have to be able to put a perspective on the results testing may give us. https://blogs.cdc.gov/genomics/2017/04/18/direct-to-consumer-2/ 1st lab test to detect concussion approved by FDA For any person who has fainted or fallen and hit their head, the blood test approved recently by the FDA could be a lifesaver. The test detects concussion by looking for specific proteins released into the blood within 12 hours after the head trauma. Known as the Banyan Brain Trauma Indicator it can reduce the need for CT Scans and radiation and will produce results within 3 - 4 hours following injury. Read more about this important breakthrough Neuroprotective diet having good results for people living with MSA https://www.multiplesystematrophy.org/about-msa/neuroprotective-diet POTS & Ehlers-Danlos Syndrome "Postural tachycardia in hypermobile Ehlers-Danlos syndrome: A distinct subtype?" by Miglis MG, Schultz B, and Muppidi S, from the Departments of Neurology and Psychiatry at Stanford University Medical Center. "It is not clear if patients with postural tachycardia syndrome (POTS) and Ehlers-Danlos syndrome (hEDS) differ from patients with POTS due to other etiologies. We compared the results of autonomic testing and healthcare utilization in POTS patients with and without hEDS." https://www.ncbi.nlm.nih.gov/pubmed/28986003
  10. DINET collects relevant research related to dysautonomia disorders and related conditions & illnesses. This is in no way meant to be a complete list of all research currently underway or the results of research currently made public. But it is a summary of key research studies that we hope are relevant and potentially important to our members' ongoing treatment and prognosis. Please check back as this page is regularly updated. New: Study released by Dr. Julian Stewart and colleagues discusses Postural Hyperventilation and the resulting variant POTS disorder. Pub Journal of the American Heart Association. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6064900/ New: An examination of the experimental and clinical trials conducted in the treatment and diagnosis of MSA. Pub Science Direct, Autonomic Neuroscience Vol 211 https://www.sciencedirect.com/science/article/pii/S1566070217301522 New: The Journal of Parkinson's Disease reviewed the impact of different exercise modes on people suffering from Parkinson's Disease. Pub IOS Press, Feb 2019 https://content.iospress.com/articles/journal-of-parkinsons-disease/jpd181484 Updated Info: Dr. Raj and associate, Dr. Miller's updated article about the pharmacotherapy for POTS. Pub. May 2018 in Science Direct, Autonomic Neuroscience. https://www.sciencedirect.com/science/article/pii/S1566070218300250 NEW: An examination of whether the impairment of the Corticol Autonomic Network (CAN) of the brain is involved int the psysiology of Neurogenic Orthostatic Hypotension (NOH) Pub. Oct 2018 https://www.ncbi.nlm.nih.gov/pubmed/30332348 NEW RESULTS: The need for specific diagnosis and treatment for patients labeled with CFS and Fibromyalgia. Important research results from one of DINET's Medical Advisors, Dr. Svetlana Blitshteyn and her colleague, Pradeep Chopra, Pub date Oct 2018 Read full article: 2018CFS_Fibromyalgia_ChronicPain_PubKarger.pdf Updated info from the CDC on HPV Vaccine safety for POTS patients https://www.cdc.gov/vaccinesafety/vaccines/hpv/hpv-safety-faqs.html Follow up to: HPV Vaccine and POTS - https://www.ncbi.nlm.nih.gov/pubmed/28689455 Complex Regional Pain Syndrome, Type 1 - Diagnosis and management. https://www.ncbi.nlm.nih.gov/pubmed/29409405?_ga=2.71311891.1204982470.1531704876-989465291.1526426607 Study results: A presentation made by the American Association for Cancer Research at their annual meeting reported findings related to health risks in post-menopausal women using medication for high blood pressure. The report claims an increased risk of pancreatic cancer in post-menopausal women using short-acting calcium channel blocking medications for their blood pressure treatment. Read the information from the AACR. Study results: NE Journal of Medicine releasing study results for episodic migraine treatment using Erenunab. The publication is reporting a 50% or greater reduction in the average number of migraine days per month. Read more about this study Study results: Physical maneuvers are viewed as important and promising strategies for reducing recurring episodes of syncope in vasovagal syncope patients. Read the result of the study published Jan. 2018 Study results: University of Alberta & McGill University release their findings for a new therapeutic agent that may hold the potential for the prevention of MS Article synopsis: https://bit.ly/2GhF5FK Research Article: https://insight.jci.org/articles/view/98410 Study results: Could gut bacteria be the key to preventing autoimmune disorders? Researchers from Yale, New Haven, CT are reporting that discovery that bacteria in the small intestine can travel to other organs and induce an autoimmune response. They also are reporting that antibiotic treatment or vaccine may be the key to combating this reaction. The study results were originally published in the journal Science. This article from Medical News Today gives a synopsis of the findings and links to the full study. https://www.medicalnewstoday.com/articles/321157.php Genomics and Health Impact Blog - a discussion about gene testing from the CDC There have been enormous contributions towards disease prevention in women's health, in particular, the development of consumer testing for the BRCA gene. The benefits cannot be applauded enough. However, health protection & research organizations like the CDC, are increasingly warning consumers about the need for professional counsel when interpreting results. This article, humorously entitled "Think before you spit" tempers the amazing breakthroughs with the cautionary information we need to have to be able to put a perspective on the results testing may give us. https://blogs.cdc.gov/genomics/2017/04/18/direct-to-consumer-2/ 1st lab test to detect concussion approved by FDA For any person who has fainted or fallen and hit their head, the blood test approved recently by the FDA could be a lifesaver. The test detects concussion by looking for specific proteins released into the blood within 12 hours after the head trauma. Known as the Banyan Brain Trauma Indicator it can reduce the need for CT Scans and radiation and will produce results within 3 - 4 hours following injury. Read more about this important breakthrough Neuroprotective diet having good results for people living with MSA https://www.multiplesystematrophy.org/about-msa/neuroprotective-diet POTS & Ehlers-Danlos Syndrome "Postural tachycardia in hypermobile Ehlers-Danlos syndrome: A distinct subtype?" by Miglis MG, Schultz B, and Muppidi S, from the Departments of Neurology and Psychiatry at Stanford University Medical Center. "It is not clear if patients with postural tachycardia syndrome (POTS) and Ehlers-Danlos syndrome (hEDS) differ from patients with POTS due to other etiologies. We compared the results of autonomic testing and healthcare utilization in POTS patients with and without hEDS." https://www.ncbi.nlm.nih.gov/pubmed/28986003
  11. Autonomic nerve disorders (dysautonomia) refer to disorders of the autonomic nervous system (ANS) function. Dysautonomia is a general term used to describe a breakdown or abnormal function of the ANS. The autonomic nervous system controls much of your involuntary functions. Symptoms are wide-ranging and can include problems with the regulation of heart rate, blood pressure, body temperature, perspiration, and bowel and bladder functions. Other symptoms include fatigue, lightheadedness, feeling faint or passing out (syncope), weakness, and cognitive impairment. (1. Mayo Clinic, Autonomic Nerve Disorders 2019) Some forms of dysautonomia include; Postural Orthostatic Tachycardia Syndrome (POTS), Orthostatic Hypotension (OH), Orthostatic Intolerance (OI), Neurocarciogenic Syncope (NCS), Pure Autonomic Failure (PAF), Multiple System Atrophy/Shy-Drager syndrome (MSA). There are many advanced tests used for further diagnosis once some form of dysautonomia is detected. The most common tests used are as follows. The tilt table test is often the standard method used for detecting types of dysautonomia. A patient is strapped to a mechanical table, which will tilt them upright at an angle of at least 60 degrees. Measurements of heart rate and blood pressure are taken while lying flat and then again at intervals while tilted upright. The optimal duration of tilt testing in patients suspected of Autonomic Dysfunction is 40 minutes or until they faint, at which point the test is concluded (Carew, Cooke, O'Connor, Donnelly, Costelloe, Sheehy & Lyons, 2009). Some patients are given a drug called isoproterenol through an intravenous line during this test. Isoproterenol is used to test the sensitivity of beta-receptors. People who have POTS with beta-receptor supersensitivity and a hyperadrenergic state will generally have an exacerbation of symptoms due to this drug. Other drugs that are sometimes used in place of isoproterenol include nitroglycerin, edrophonium, adenosine triphosphate, ephedrine and nitroprusside (Grubb & McMann, 2001). The tilt table test may be combined with transcranial doppler ultrasonography. Transcranial doppler ultrasonography is useful in detecting a reduction in cerebral blood flow (Fredman, Biermann, Patel, Uppstrom & Auer, 1995). A number of patients with orthostatic issues will have a decrease in blood flow to the brain upon standing (Low, 2000). This can occur even if the patient does not become hypotensive (Low, 2000). Bowel motility studies are useful in ascertaining the degree of gastrointestinal involvement present (Grubb, Kanjwal & Kosinski, 2006). A catecholamine test is sometimes given to patients suspected of having chemical abnormalities. Testing one's levels of catecholamines and their metabolites is also useful in detecting certain tumors, such as pheochromocytoma. Some patients will have abnormal catecholamine levels, particularly norepinephrine levels. Norepinephrine is the main chemical messenger of the sympathetic nervous system, and is often elevated in certain types of dysautonomia patients. A physician can determine one's total catecholamine levels through analysis of their blood or urine. The blood test is quite simple. The patient will have to lie quietly for a period of time (usually around 30 minutes) before their blood is drawn. Some doctors believe a more accurate reading is gained if an intravenous line is placed in the patient's arm before the resting period. This is because the fear and pain associated with needles may induce a rise in catecholamines that could obscure results. Other doctors will use the 24-hour urine catch method to determine catecholamine levels. The patient is given a container to collect their total urine volume over a 24-hour period. The container is then returned to the physician and catecholamine levels are assayed. The cold pressor test is used to activate the blood pressure control system. The patient places their hand in ice water during this test. The physician will monitor blood pressure changes. This test can be used to localize a sympathetic lesion in the afferent or efferent limb of the baroreceptor reflex arc (Engstrom & Aminoff, 1997). Deep breathing/Paced respirations are tests that evaluate autonomic function by measuring heart rate responses to controlled breathing. Electromyography (EMG) is sometimes used to test the electrical activity of nerves and muscles. A needle electrode(s) is inserted through the skin into the muscle. The measured muscle response to nervous stimulation can detect nerve or muscle disorders. A nerve conduction study may be given concurrently with electromyography. During this test, muscles and nerves are stimulated with small bursts of electricity to determine if they are functioning in a normal manner. The Hand-grip test is a simple and non-invasive test of sympathetic function. Some physicians feel its sensitivity and specificity compare favorably with the tilt table test (Khurana & Setty, 1996). During this test, a patient squeezes a hand-grip until their arm is fatigued. Those with autonomic dysfunction may have an excessive diastolic blood pressure response to this test. Magnetic resonance imaging (MRI)/(MRA) can be used to diagnose some conditions thought to be associated with autonomic dysfunction, such as tumors, Chiari, cervical stenosis or the nutcracker phenomenon. This test encompasses a powerful magnet, low-intensity radio waves, and computer technology. The patient lies still inside the magnet. The magnetic field and different radio frequencies allow a specialized computer to generate detailed images of the inside of the body. The Stand-Up MRI may lead to interesting findings in POTS patients. Microneurography is sometimes used to record traffic from the peripheral nerves. A small needle is placed into a nerve in the leg. Physicians can then measure nerve signals traveling from the brain to the blood vessels. Some POTS patients have nerve damage in their legs (Low, 2000).. Sweat tests such as the thermoregulatory, resting sweat output and the quantitative sudomotor axon reflex are sometimes given to patients to determine if they are sweating appropriately. Many people with forms of dysautonomia will have impaired sweating abilities. Some patients report inappropriate sweating, including night sweats. During the thermoregulatory sweat test, the patient wears a disposable bathing suit and an orange powder is applied to the skin. The patient is then placed in a hot environment to induce sweating. The orange powder will turn purple where the patient sweats. In this way, physicians can determine if the patient has abnormal sweating patterns. A small battery operated current may be used to stimulate the sweat glands directly during the resting sweat output test. The quantitative sudomotor axon reflex test (QSART) is used to determine sweat volume and latency of response. It can also be used to test for postganglionic lesions (Fealey, 1996, p. 297). A reduced or absent sweat response indicates postganglionic sympathetic sudomotor failure. Used in conjunction with the thermoregulatory sweat test, QSART can differentiate a pre- from the postganglionic lesion (Low, 2003, 407-421). Some patients may be given a 24-hour urinary sodium test. This test is useful in determining if one's plasma volume is normal (Low, 2000). One study performed by researchers at the Mayo Clinic showed that 28.9% of POTS patients excreted less than 100 mEq in 24 hours and 66.4% excreted less than 150 mEq in 24 hours. These researchers concluded that an important first step in the assessment and treatment of POTS is to determine the patient's volume status and institute salt and fluid replacement in those with hypovolemia (Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007). A study of neurocardiogenic patients noted that those with a urinary sodium excretion <170 mmol/24 hrs. were more likely to have reduced plasma volume (El-Sayed & Hainsworth, 1996). These patients responded well to salt loading. A patient may also be given a test to determine total red cell mass and plasma volume. Hypovolemia is sometimes found in conjunction with POTS. Plasma volume may be reduced or red cell mass may be reduced in the POTS patient (Low, 1993). Another test that is sometimes used to determine autonomic dysfunction is the Valsalva maneuver. This is a test of baroreflex responsiveness. A physician will have the patient blow into a tube while observing heart rate and blood pressure changes. Impaired baroreflex appears to be characteristic of moderate to severe forms of dysautonomia (Stewart, 2002). Patients may have an excessive blood pressure increment after cessation of the maneuver that is sometimes associated with headache (Sandroni, Novak, Opfer-Gehrking, Huck & Low, 2000). Some researchers report normal heart rate responses during the maneuver and conclude that the assessment of heart rate responses during this test does not contribute to the diagnosis of POTS (Braune, Wrocklage, Schulte-Monting, Schnitzer & Lucking, 1999). A Patient may be given various tests to determine how dysautonomia is affecting their heart. Sinus tachycardia commonly occurs in those with dysautonomia. A patient may be asked to wear a Holter monitor to determine if their heart is functioning correctly. This device allows physicians to record the heart's activity over an extended period of time (usually 24 hours). Electrodes are placed at various locations on the patient's chest. These electrodes are attached to a small portable recorder. A patient may be asked to keep a written journal of any symptoms they experience while wearing the Holter monitor. Irregular heart rhythms are recorded and then evaluated by a physician. Endless-loop recorders or event recorders are sometimes used instead of Holter monitors. These recorders are smaller and can be worn for months at a time. Patients will press a button after experiencing symptoms such as tachycardia or fainting. An ECG of the event will be recorded and transmitted via telephone for a physician to access. A stress test can be used to determine how exercise might affect the dysautonomia patient. The patient walks on a treadmill until a target heart rate is reached. The test is ceased if the patient becomes exhausted or develops complications. The heart's electrical activity is recorded while the patient exercises. Sometimes an echocardiogram will be performed along with the stress test. An echocardiogram is an ultrasound of the heart. This test helps physicians identify abnormalities in the heart's structure and function. The above are only some of the tests that may be given to a patient suspected of having autonomic dysregulation. It is important for patients to ask their physician if they should discontinue their medication before taking specific tests. Some medications that have been reported to significantly affect autonomic testing results include chlorpromazine, thioridazine, tricyclic antidepressants, bupropion, mirtazapine, venlafaxine, clonidine, alpha blockers, beta blockers, calcium channel blockers, opiates and topical capsaicin (Sandroni, 1998). A patient taking medication to lessen symptoms will present with decreased symptoms upon testing. A patient should always consult their physician before discontinuing any medication. Resources 1. Mayo Clinic, Autonomic Nerve Disorders, Full Text Link 2. Braune, S., Wrocklage, C., Schulte-Monting, J., Schnitzer, R., & Lucking, C. H. (1999). Diagnosis of tachycardia syndromes associated with orthostatic symptoms. Clinical Autonomic Research, 9(2), 97-101 PMID: 10225614 [PubMed - indexed for MEDLINE] 3. Carew, S., Cooke, J., O'Connor, M., Donnelly, T., Costelloe, A., Sheehy, C., & Lyons, D. (2009). What is the optimal duration of tilt testing for the assessment of patients with suspected postural tachycardia syndrome? Europace. 11(5), 635-637. PubMed 4. El-Sayed, H., & Hainsworth, R. (1996). Salt supplement increases plasma volume and orthostatic tolerance in patients with unexplained syncope. Heart, 75, 134-140. Full Text 5. Engstrom, J. W., & Aminoff, M. J. (1997). Evaluation and treatment of orthostatic hypotension. American Family of Physicians, 56(5). PubMed 6. Fealey, R. (1996). Disorders of sweating. In D. Robertson, P. A. Low, & R. J. Polinsky (Eds.), Primer on the autonomic nervous system (p. 293-299). San Diego, CA: Academic Press. 7. Grubb B. P., Kanjwal, Y., & Kosinski, D. J. (2006). The postural tachycardia syndrome: A concise guide to diagnosis and management. J Cardiovasc Electrophysiol., 17, 108-112. 8. Grubb, B. P., & McMann, M. C. (2001). The Fainting Phenomenon: Understanding why people faint and what can be done about it. New York: Futura Publishing Company. 9. Khurana, R.K., & Setty, A. (1996). The value of the isometric hand-grip test--studies in various autonomic disorders. Clinical Autonomic Research, 6, 211-218. PMID: 8902317 [PubMed - indexed for MEDLINE] 10. Low, P. A. (1993). Postural Orthostatic Tachycardia Syndrome. Department of neurology, Mayo Clinic. 11. Low, P. A. (2000, July). Orthostatic intolerance. National Dysautonomia Research Foundation Patient Conference. Minneapolis, Minnesota. 12. Low, P. A. (2003). Seminars in neurology. In K. L. Ross and R. Freeman (Eds.), Testing the Autonomic Nervous System (pp. 407-421). New York, NY: Thieme Medical Publishers, Inc. 13. Robertson, D. (1996). Clinical assessment of autonomic failure. In D. Robertson, P. A. Low, & R. J. Polinsky (Eds.), Primer on the autonomic nervous system (p. 111-115). San Diego, CA: Academic Press. 14. Sandroni, P. (1998, November/December). Testing the autonomic nervous system. In C. B. Berde, & M. C. Rowbotham (Eds.) International Association for the Study of Pain: Technical Corner From IASP Newsletter. http://www.iasp-pain.org/TC98NovDec.html 15. Sandroni, P., Novak, V., Opfer-Gehrking, T. L., Huck, C. A., & Low, P. A. (2000). Mechanisms of blood pressure alterations in response to the Valsalva maneuver in postural tachycardia syndrome. Clinical Autonomic Research, 10(1), 1-5. 16. Stewart, J. M. Heart rate and blood pressure variability. Retrieved March 23, 2002, from Center for Pediatric Hypotension. http://www.nymc.edu/fhp/centers/syncope/heart%20rate%20variability%2 C%20blood%20pressure%20variability%20and%20the%20baroreflex.htm 17. Thieben, M. J., Sandroni, P., Sletten, D. N., Benrud-Larson, L. M., Fealey, R. D., Vernino, S., Lennon, V. A., Shen, W. K., & Low, P. A., (2007). Postural orthostatic tachycardia syndrome: the Mayo Clinic experience. Mayo Clin. Proc. 82, (3), 308-313.
  12. edriscoll

    Snyder

    Assistant Professor of Pediatrics Mailing address: P.O. Box 208064 New Haven, CT 06520-8064
  13. Editor's note: Below is a story submitted by a member for our site. If you would like to share your story of the caregiving experience, please email webmaster@dinet.org ********************************************************************************** Rose's Story I have been a caregiver and I have had caregiving for myself. The experience from both sides has required effective communication. When I was younger, my mom developed crippling Rheumatoid Arthritis and terminal lung cancer. I was the closest to my mom both emotionally and physically so it was a natural fit for my role as caregiver to grow with her illness and her need for help. My mother was a fiercely proud and independent woman. She was ahead of her time when it came to teaching herself how to use power tools and to build and fix things around our house. Growing up in the 60's, women her age still wore dresses in public, never pants, and men still took care of the "heavy" work. My mother wore her dresses alright, but I remember her doing that while she swung a sledgehammer and took down a wall in an upstair's bedroom. So when she started to lose the use of her hands and have trouble walking, she was angry. She skipped all the other parts of adjusting to chronic illness and stuck herself on the anger step and wouldn't let go. Her independence, pride and now anger, made her a very difficult patient to care for. She was angry at herself when she needed help and angry with me for offering it. My patience and empathy were tried on a daily basis. I'm not proud looking back on this, but I have to admit that there were times when I would yell at her for being so ungrateful and even threaten her from time to time that I would leave if she really didn't want my help. I was hurt that no matter what I did, she seemed not to like it. I'd work all day to cook a meal I knew she loved and she would refuse to eat more than a bite when suppertime came. I started to really resent her attitude, the amount of work I had to do, and above all, the terrible treatment I felt she was giving me without any good reason. After a particularly bad day together, my mom's friend stopped by to see her and could see that I was on the edge of tears. I explained to her what was going on and what I was feeling. After about 15 minutes of listening to me complain, she spoke up. She asked why I was doing this and I said: "she's my mom". She said "so? You do have a sister? She has sisters herself? There are options. So, why are YOU doing this?" I said "I love her. She's my best friend and I want her to feel good. I want our relationship to be like it was" She said "So does she but that's impossible isn't it? She's not the same and can't be to you what she was before. She needs you to help her find her way to live in this body - the one she has now. You keep trying to "help her" by trying to find ways for her to do what she did before. Maybe if you tried to help her find ways to do new things that she CAN do, she would be happier. She would have some independence again." I was stunned because I had no idea I was doing that until she said it to me. From that day until the day my mom died, we did things differently. We adjusted as we needed to and realigned activities as we went. Instead of my spending the day cooking her favorite meal and placing it in front of her. We cooked together. I handled the knives or the things that required dexterity that she didn't have, but I gave the other things that she could still do. I bought her a high stool so she could reach the sink again comfortably. My mom's other passion was gardening. So instead of doing the gardens for her. I started bringing her outside and getting her comfortable at the potting bench. She did all the potting. She prepped all the bulbs. She was happy again because she felt useful, she had pride in her work and she had independence. We went from my caring for her to our caring for each other again. When I became ill 25 years later and required caregivers of my own on and off. I sat my husband and my daughter down and told them this story. We are able to skip the angry days (mostly) and bad temperament They are able to help me in the ways I really needed help. And we are able to care for each other the way a family should. I hope my story can help patients find the ways to communicate to their caregivers what will help them most and I hope it will help caregivers find the ways to listen and be able to help each patient adjust to their new life.
  14. Editor's note: Below is a story submitted by a member for our site. If you would like to share your story of the caregiving experience, please email webmaster@dinet.org ********************************************************************************** Rose's Story I have been a caregiver and I have had caregiving for myself. The experience from both sides has required effective communication. When I was younger, my mom developed crippling Rheumatoid Arthritis and terminal lung cancer. I was the closest to my mom both emotionally and physically so it was a natural fit for my role as caregiver to grow with her illness and her need for help. My mother was a fiercely proud and independent woman. She was ahead of her time when it came to teaching herself how to use power tools and to build and fix things around our house. Growing up in the 60's, women her age still wore dresses in public, never pants, and men still took care of the "heavy" work. My mother wore her dresses alright, but I remember her doing that while she swung a sledgehammer and took down a wall in an upstair's bedroom. So when she started to lose the use of her hands and have trouble walking, she was angry. She skipped all the other parts of adjusting to chronic illness and stuck herself on the anger step and wouldn't let go. Her independence, pride and now anger, made her a very difficult patient to care for. She was angry at herself when she needed help and angry with me for offering it. My patience and empathy were tried on a daily basis. I'm not proud looking back on this, but I have to admit that there were times when I would yell at her for being so ungrateful and even threaten her from time to time that I would leave if she really didn't want my help. I was hurt that no matter what I did, she seemed not to like it. I'd work all day to cook a meal I knew she loved and she would refuse to eat more than a bite when suppertime came. I started to really resent her attitude, the amount of work I had to do, and above all, the terrible treatment I felt she was giving me without any good reason. After a particularly bad day together, my mom's friend stopped by to see her and could see that I was on the edge of tears. I explained to her what was going on and what I was feeling. After about 15 minutes of listening to me complain, she spoke up. She asked why I was doing this and I said: "she's my mom". She said "so? You do have a sister? She has sisters herself? There are options. So, why are YOU doing this?" I said "I love her. She's my best friend and I want her to feel good. I want our relationship to be like it was" She said "So does she but that's impossible isn't it? She's not the same and can't be to you what she was before. She needs you to help her find her way to live in this body - the one she has now. You keep trying to "help her" by trying to find ways for her to do what she did before. Maybe if you tried to help her find ways to do new things that she CAN do, she would be happier. She would have some independence again." I was stunned because I had no idea I was doing that until she said it to me. From that day until the day my mom died, we did things differently. We adjusted as we needed to and realigned activities as we went. Instead of my spending the day cooking her favorite meal and placing it in front of her. We cooked together. I handled the knives or the things that required dexterity that she didn't have, but I gave the other things that she could still do. I bought her a high stool so she could reach the sink again comfortably. My mom's other passion was gardening. So instead of doing the gardens for her. I started bringing her outside and getting her comfortable at the potting bench. She did all the potting. She prepped all the bulbs. She was happy again because she felt useful, she had pride in her work and she had independence. We went from my caring for her to our caring for each other again. When I became ill 25 years later and required caregivers of my own on and off. I sat my husband and my daughter down and told them this story. We are able to skip the angry days (mostly) and bad temperament They are able to help me in the ways I really needed help. And we are able to care for each other the way a family should. I hope my story can help patients find the ways to communicate to their caregivers what will help them most and I hope it will help caregivers find the ways to listen and be able to help each patient adjust to their new life.
  15. I'm sorry about that. The post was supposed to expire, that was my error. The questionnaire ended 8/31. But we do expect to have a few other phases to this project over time, so please check back with us. Again, I apologize for the error.
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