Exploring Ayurveda For Cerebellar Ataxia And Pain Control

Western medicine is innovative, but if you search through PubMed, you find very few drug trials for degenerative cerebellar ataxia. There is no known cure for ataxia, so our best hope still lies in finding a therapy to ease the symptoms. With all the modern innovations available what if one possible answer lies in an ancient system of holistic healing? Ayurvedic medicine deserves a look. “Ayurveda” comes from the Sanskrit words Ayur (life) and Veda ( knowledge) and is the oldest (5,000-year-old) recorded system of medicine in history. It combines the concept of whole health; lifestyle, exercise, diet along with medicinal herb compounds, some which predate written history. Many traditional therapies are now being studied in a clinical setting using western methods of research, double-blind trials, and research review to prove or disprove their efficacy. The most promising trial we’ve previously highlighted is Degenerative Cerebellar Ataxia After Ayurvedic Therapy. In 2009 a joint study in India was conducted by…

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20 Strength Exercises When You’re Fighting Mobility Problems

bands exercise

  Finding a user-friendly exercise program for patients diagnosed with related ataxia symptoms isn’t easy. For example, Gary is limited to lifting 10lbs so he doesn’t cause fresh bleeding into his CNS. Standing or sitting with free weights is a no-no; even without the lifting limit, you wouldn’t want to be the spotter with his balance problem. Before his nerve block, getting down on the floor to do planks, sit-ups or leg lifts would bring an instant migraine. Exercising was a minefield. Gary’s appointment for his balance and gait evaluation gave us the opportunity to ask the kinesiology department these questions. He needed a low-impact strength program designed so it: Could be done at home Wouldn’t trigger headaches Balance problems wouldn’t interfere Muscle tone could be strengthened or maintained   The physical therapist built a program with ten strength exercises, each set targeting the upper or lower body using resistance…

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Taming Chronic Headache Pain

Managing Chronic Headache Pain

    Gary woke this morning without a headache. The first pain-free moment in 12 very miserable years. Complete pain relief. I just want to read those words over and over. A chronic headache or migraine pain sufferer will understand the long and tearful journey. Imagine the pain of a migraine. Now imagine enduring it for 76 unending days. Light, sound, and movement become the enemy. It lasted for a glorious few hours. A small twinge has returned to the base of the skull area, but Gary says it’s so light now (He describes it as a one on the pain scale) he would be ecstatic even if this is as good as it ever gets.  Living With Daily Pain Gary has lived with pain for years. His daily headache level hovered around a three. Seven days a week. He learned to work and live with a chronic headache for years. His…

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The Struggle With High Cost Medications

copay struggle

Life with a rare disease or chronic illness has a way of taking over; juggling responsibilities, appointments, kids, and family. Take your meds on time. Eat something. Try to work. Order your meds. Unless you’re lucky enough to have perfect drug coverage the last one is always a heartbreaker. People who battle chronic illness often struggle to cover their high-cost co-pay share of prescription medications. Newly diagnosed patients are often not aware of the one bit of information that may help ease some of the expense. There are programs out there who offer copay assistance specifically for individuals who have drug coverage but are faced with covering high out-of-pocket costs. Often programs are often offered by the specific drug manufacturer, but there are also many non-profit organizations who will work with your pharmacy or physician, so cost doesn’t keep you from filling your prescriptions. Every day, millions of chronic disease…

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Neurology Roadtrip

superficial siderosis on the brain

We made our trip to Gary’s regular neurology appointment this week seeking answers to his headaches. Since he left the private healthcare sector last January and entered the VA system road trips are the rule. His PCP, blood testing lab and primary audiologist are in a clinic in Texas. The hematologist, regular cardiologist, back-up audiologist, dermatologist, and coumadin clinic nurse are all in Louisiana. Gary travels to Arkansas for his electrophysiology cardiologist, neuropsychologist, and neurology. We may be living a Willie Nelson song, but you can’t say the VA is not thorough.We went to neurology hoping there would be some headway towards relief for Gary’s headache pain. He never sees the same resident or neurologist, so we are in constant new patient mode.   The VA does excel in keeping detailed notes from every visit, so it’s easy to tell if the resident of the day has done their homework.…

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Dialing Down The Pain

Superficial Siderosis Pain

Gary always hurts.   It’s a fact-of-life he can’t run from; from his head to his toes, 365 days a year, 24-hrs a day. Pain. The days his pain scale reads 3 or 4, those are good days.  Most days he can look forward to hitting 5 or 6; but if a headache decides to join in at full force, then you can throw out that scale. Thankfully there are ways to ease some of the body ache and joint pain. Doctors frown upon taking acetaminophen in truckload quantities. Floating in a haze of prescription painkillers is an option, but Gary already takes 199 pills a week. ONE HUNDRED AND NINETY-NINE PILLS. It’s understandable why we try to find him relief using alternative methods. I make Arnica infused olive oil in large batches. I tried arnica first when I hurt a flexor muscle running. (Lesson- stretch, stretch, stretch). You can…

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The Neuropathy Chronicles 2.0

Peripheral Neuropathy Symptoms   Hello Pain, My Old Friend   You might remember from one of our earlier posts, The Neuropathy Chronicles, how we managed to tame the burning foot pain that is so familiar to Superficial Siderosis patients. Two years later TCM is still the winner. We saw for ourselves how true this was during early spring when the electrical system of Gary’s heart (more on this later) decided to join the party. Complications led to pulmonary embolisms in five lobes of his lungs and long-term coagulation therapy. The TCM herbal blend Gary uses stumped the VA pharmacists. He cycled off his neuropathy formula in the hospital while they researched medication conflicts and stayed off them. Jump ahead two months and here comes the tingling. Pretty soon it progressed to full-fledged burning. The VA pharmacy was never able to find any negative information so they let him resume his Corydalis…

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Railroad Spike: Chronic Headache Pain

chronic headache pain

Living With Chronic Headache Pain   Chronic headache pain has been in our lives for years. Our Superficial Siderosis community has many fellow sufferers. On good days the pain is a dull throb pecking away, neck, eyes, and top of your head. The not so good days it feels like a hot railroad spike through the base of your skull sprinting up to your eyes. Pain that radiates into every part of your head creating excruciating agony.   It’s A Headache Not A Marathon   Gary has always tried to control his pain with over-the-counter pain medications, sitting quietly with his eyes closed and keeping his neck still but this hadn’t been working the last eight months. The severity is increasing along with the duration. This June an unusually debilitating headache took hold and wouldn’t ease up for 76 DAYS. He agreed to a trip to the Shreveport VA emergency room…

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Your Life As A Germ Magnet

compromised immune system

Germ Magnet Immune System Life as a germ magnet. The average person will stroll through life never giving much thought to living with a weak immune system. A person with Superficial Siderosis will often find out the hard way that caution should be the word of the day. Every day we’re bombarded with invisible bugs. You think you’ve taken care to avoid those unseen dangers, but life as a germ magnet just about guarantees something nasty is bound to take hold. Last winter is the perfect example. Our daughters family was suffering from a particularly nasty flu bug. We had, in all honesty, been avoiding their house, but we found ourselves answering a plea from one of the granddaughters. A stopped up commode. Gary walked in, plunged the offending toilet into submission, and walked straight to a sink in another room. He thoroughly washed his hands and arms. I stood ready…

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The Neuropathy Chronicles

Pain of neuropathy

Neuropathy: Burn Me, Stab Me, Shoot Me We touched on our search for some relief from peripheral neuropathy in our August blog post, QUARTERLY NEUROLOGY FOLLOW-UP. You’ll find an explanation of the type of neuropathic pain connected with Superficial Siderosis in MANAGING NEUROPATHIC PAIN. Sharp jolting stabs of burning pain across one or both feet was making it impossible to sleep. A short trial run of the prescription medication Lyrica was discontinued due to some very off-putting side effects. We were trying to avoid the opiate road for as long as possible, so in August we turned to Traditional Chinese Medicine (TCM). A tincture made from boiled rhizomes of the Corydalis Yanhusuo plant has been used to treat pain since the eighth century by TCM practitioners. Modern day researchers have identified twenty alkaloids, including tetrahydropalmatine (THP), which acts as a sedative and analgesic, as well as dl-Tetrahydropalmatine, Corydaline, Protopine, Tetrahydrocortisone,…

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