Changes

Behavior

We should take a moment to discuss the elephant in the room; the cognitive, emotional, and mood changes that may accompany this disorder’s progression in moderate to later stages. It is comforting to realize that not every superficial siderosis patient will experience cognitive issues or behavioral changes. Emotionally, a select group of superficial siderosis patients will be fighting Mr. Toad’s Wild Ride every single day. Our community has learned how movement, gait instability, speech impairment, uncontrollable eye movement, and swallowing problems may manifest as the result of superficial siderosis induced damage to the cerebellum. Schmahmanns’s Dysmetria of Thought is a theory that suggests the cerebellum also plays a crucial role in the flow between thinking, actions, feelings, and interpersonal interactions. …the cerebellum regulates not only the rate, rhythm, force and the accuracy of movements, but also the speed, consistency, capacity, and appropriateness of cognitive processes. Jeremy Schmahmann MD, Director, Ataxia

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Balancing Act

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Some days are better than others but you really start to worry about the future when you hear the unmistakable sound of someone bouncing off the wall and hitting the ground. Gary has been stubbornly trying to continue walking inside the house using what I silently refer to in my mind as Triple L Walking– Launch, List, and Lurch.

He uses furniture and walls to steady himself. Granted he still has some good days but those are becoming increasingly rare. On the bad days, he pushes off towards where he wants to go (launch), walking in a sideways motion (list) and forces his body to arrive where he was headed (lurch). You can feel the collective holding of breath by everyone in the room. Yes, I am aware of the silent scolding glances you’re shooting me but you try making the horse drink.

Dr. Levy has explained in the past how the fight with keeping your balance will aggravate Superficial Siderosis fatigue. Gary has resigned himself to the fact he needs either his rolling walker or wheelchair every time we leave the house. It’s a matter of distance now in picking the one we choose. If there will be short periods of walking with opportunities to rest the walker works. He uses the walker during our daily road walks. If he’s feeling strong he’s often able to make it to the 3/4 mi. mark before we have to turn back. If we go on longer walks he will push his wheelchair, using it as a walker, when he gets tired he rides while we fight over who gets to push him. Take my word, pushing a wheelchair three miles up hills is the best leg workout.

The possibility is very real Gary’s problems with balance will continue to worsen so I thought now was a good time to revisit an earlier post about Motion Therapeutics and their amazing Balance Wear Vest.

Balance and Gait Therapeutic Alternatives

Cynthia Gibson-Horn is a physical therapist who designed a remarkably straightforward combination of physical therapy while wearing a weighted balance vest. The vest, “BalanceWear® Orthotic.” requires a patient evaluation so they can provide a custom weighted vest, counter-balanced to your particular balance needs.

The results are remarkable. Multiple Sclerosis, Spinocerebellar Ataxia, Parkinsons’, Peripheral Neuropathy, and Cerebellar Degeneration patients have all shown improvement from therapy. Terry Hayes suffers from severe cerebellar degeneration and her doctor thought she would spend the rest of her life in a wheelchair. Six months of physical therapy using the weighted vest and Terry was walking once again. Read Terry’s story on the MotionTherapeutics Inc website.

Motion Therapeutics logo
 MotionTherapeutics Inc. provides non-invasive therapeutic solutions for balance and mobility disorders using Balanced-Based Torso-Weighting® (BBTW®) garmets. Once fitted with the BBTW® garment, clients often achieve immediate improvement in their ambulatory ability.

Inescapable Realities

Realities

Superficial siderosis progresses slowly during the early years. This may be an unintended blessing considering the years many will spend searching for a diagnosis. Gary’s story timeline has always remained closely aligned with physician estimates. The inescapable reality we must now face is this disease has entered an accelerated stage. I need to be clear. It’s not the superficial siderosis accelerating; it’s the overwhelming effect the symptoms of this disease inflict on Gary’s body. The changes are pronounced and palpable. Visible and Invisible Our life revolves around doctor appointments. Ten trips spread over three states in four weeks. Gary receives very attentive care but I often wish there was something doctors could offer him besides platitudes and bandaids. The symptoms are winning the battle. Gary suffers falls almost every day. We had a physical therapist coming to the house twice weekly for two months; by his eight-week evaluation they threw

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Exploring Ayurveda For Cerebellar Ataxia And Pain Control

Ayurvedic

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

Mobility Strength 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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What’s Your Fall Risk?

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If you’re living with a gait and balance impairment, this is a familiar scenario. You’re innocently walking, minding your own business, and out of nowhere an angry rogue floor knocks you down. No reason, just walking, then BOOM,  down you go. Laughing about a rogue surface helps lighten an embarrassing situation, but mobility problems can impair your ability to exercise, put you at risk for sprains, bruises or worst case, breaking a bone. Gary’s gait and balance have slowly been declining. His balance is not as bad as his gait on flat surfaces, but if he’s on uneven ground or attacked by an angry floor its impossible to stop a fall. His neurologist felt it was important he start a physical therapy program to maintain muscle strength. His PCP thought it might be time to transition from a cane to a walker. Cerebellar degeneration or atrophy is often the underlying cause of

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Cerebellar Ataxia and Ayurvedic Therapy Possibilities

Exploring Alternative Medicine   Ataxia was once referred to as the “Drunken Sailor” syndrome a few hundred years ago. The gait problems that arrive from superficial siderosis are just one of many that fall under cerebellar ataxia. We can relate big time. Gait, balance, hand coordination, vision, speech, swallowing, mild cognitive impairment, and fatigue are just a few problems related to cerebellar ataxia that develops because of cerebellar degeneration. Gary’s cerebellar atrophy was diagnosed as mild in 2014 but still dropped a variety of symptoms directly in our lap. Vision issues have made driving no longer possible. Speech, swallowing, and coordination problems seem to intensify with fatigue. Cognitive issues are evening out as of late so being the glass half full part of this partnership I’m going to chalk that up to some positive effect of the green tea. As for mood, well we’ve been married 37 years, so we deal with that in

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Living On Tilt

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Ataxia Issues Gait and Balance 50% of Superficial siderosis patients will learn to live their lives permanently on tilt. Ataxia-related gait and balance issues were a late addition to Gary’s list of symptoms, but here they are. In early 2013 random bouts of nausea and vertigo would hit with no warning. Walking would sometimes be puzzling because of the sudden listing to one side or the other. It was this puzzling combination of hearing and balance struggles that would ultimately lead us to a correct diagnosis. If you are familiar with Texas Holdem, you may have heard the phrase going on tilt. You’re having a good night; cards are falling your way, and you’re holding a hand the odds say is pretty darn unbeatable. You’ve been counting your pot since the turn, betting steady, and when you think it’s a done deal, the river card hits. There you are, sitting

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