About Us

Multiple Sclerosis

Multiple sclerosis (or MS) is a chronic, often disabling disease that attacks the central nervous system (CNS), which is made up of the brain, spinal cord, and optic nerves. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another. Today, new treatments and advances in research are giving new hope to people affected by the disease. - National Multiple Sclerosis Society

Multiple sclerosis (abbreviated MS, also known as disseminated sclerosis orencephalomyelitis disseminata) is an inflammatory disease in which the fatty myelin sheaths around the axons of the brain and spinal cord are damaged, leading to demyelination and scarring as well as a broad spectrum of signs and symptoms.[1] Disease onset usually occurs in young adults, and it is more common in women.[1] It has a prevalence that ranges between 2 and 150 per 100,000.[2] MS was first described in 1868 by Jean-Martin Charcot.[3]

MS affects the ability of nerve cells in the brain and spinal cord to communicate with each other. Nerve cells communicate by sending electrical signals called action potentials down long fibers called axons, which are wrapped in an insulating substance called myelin. In MS, the body's own immune system attacks and damages the myelin. When myelin is lost, the axons can no longer effectively conduct signals.[4] The name multiple sclerosis refers to scars (scleroses—better known as plaques or lesions) particularly in the white matter of the brain and spinal cord, which is mainly composed of myelin.[3] Although much is known about the mechanisms involved in the disease process, the cause remains unknown. Theories includegenetics or infections. Different environmental risk factors have also been found.[4][5]

Almost any neurological symptom can appear with the disease, and often progresses to physical and cognitive disability.[4] MS takes several forms, with new symptoms occurring either in discrete attacks (relapsing forms) or slowly accumulating over time (progressive forms).[6] Between attacks, symptoms may go away completely, but permanent neurological problems often occur, especially as the disease advances.[6]

There is no known cure for multiple sclerosis. Treatments attempt to return function after an attack, prevent new attacks, and prevent disability.[4] MS medications can have adverse effcts or be poorly tolerated, and many patients pursue alternative treatments, despite the lack of supporting scientific study. The prognosis is difficult to predict; it depends on the subtype of the disease, the individual patient's disease characteristics, the initial symptoms and the degree of disability the person experiences as time advances.[7] Life expectancy of patients is 5 to 10 years lower than that of the unaffected population. - Wikipedia

About The Paralympics

Danelle and Rob compete in the VI alpine ski events during the Winter Paralympic Games. If you’re not

familiar with the Paralympic Games, read on…

 

Who can participate?

The Paralympic Games are for elite athletes with physical disabilities. Disability categories include:

• visually impaired (VI)
• amputee
• spinal injuries
• cerebral palsy
• “les autres,” encompassing physical disabilities such as Dwarfism and Multiple Sclerosis.

 

When and where do they happen?

The Winter Paralympics take place two weeks after the Olympics; same goes for the Summer Paralympics. The Paralympic Games are held in the same location, at the same venues, as the Olympic Games.

 

Do athletes compete for medals?

Just as in the Olympics, athletes compete for Gold, Silver and Bronze medals.

 

Which sports are included in the Winter Paralympic Games?

The Winter Paralympic Games feature five sports:

• Alpine Skiing, including downhill, Super-G, Super Combined, Giant Slalom and Slalom events
• Cross country, or Nordic, Skiing
• Biathlon
• Sled Hockey, also known as ice sledge hockey
• Wheelchair Curling

Both alpine and Nordic Skiing are further separated into “standing,” “sitting” and “visually impaired” categories to fairly match athletes against like abilities.

 

How many athletes compete?

In Vancouver (2010), more than 600 athletes from 40 countries competed. 13 women and 37 men represented Team USA.

 

What is next for Team Vision4Gold and Team USA?

• 2011-12 World Cups
• 2013 World Cups and World Champs
• Sochi, Russia 2014!

 

Resources:

US Paralympics

International Paralympic Committee

Sochi 2014

Retinitis pigmentosa

Retinitis pigmentosa (RP) is a group of genetic eye conditions that leads to incurable blindness.[1] In the progression of symptoms for RP, night blindness generally precedes tunnel vision by years or even decades. Many people with RP do not become legally blind until their 40s or 50s and retain some sight all their lives.[2] Others go completely blind from RP, in some cases as early as childhood. Progression of RP is different in each case.

RP is a type of progressive retinal dystrophy, a group of inherited disorders in which abnormalities of the photoreceptors (rods and cones) or the retinal pigment epithelium (RPE) of the retina lead to progressive visual loss. Affected individuals first experience defective dark adaptation or nyctalopia (night blindness), followed by reduction of the peripheral visual field(known as tunnel vision) and loss of central vision. - Wikipedia

About VI Skiing

What is VI Skiing?

Visually Impaired, or “VI”, skiing means that the athlete is either totally blind, or has reduced visual acuity or visual field. VI skiers use the same equipment (skis, poles) as skiers without disabilities, but ski with a guide who provides verbal cues for following the course.

 

What is Retinitis Pigmentosa and how does that affect Danelle’s vision while skiing?

Retinitis Pigmentosa is a genetic eye condition where the retina progressively degenerates and eventually causes blindness. Danelle has “spotted vision” and can only see up to five feet in front of her. Even then, she can only see contrasting colors without any level of detail.

Most people with disabilities have the same disability all the time – for Danelle, her vision is never the same, always changing and often getting worse due to the light conditions. Danelle “appreciates every bit of light that comes in through my eyes. There will be darkness. I just don’t know if it’s tomorrow or another five years from now.”

 

How is the skier able to ‘see’ and communicate with the guide?

Danelle’s husband and guide, Rob, helps her navigate the course with a combination of physical and communication aids:

Contrasting bib. Rob wears a dark racing suit and bright orange tee shirt and bib, creating a high-contrast target that Danelle can spot as she skis behind.

Headsets for constant communication. Both Danelle and Rob wear motorcycle headsets (from Cardo Systems), which are attached to their ski helmets. Danelle cannot ski without these and luckily, they are bomber – reliable in snow, wet conditions, even crashes! Rob is constantly communicating about where to turn and what she’ll feel with the terrain, keeping Danelle on course even if she loses sight of him. This open line of communication – translating every “step” down the mountain – is essential for any VI team.

Trust. When sight is limited – or totally gone – you have nothing if you don’t have trust. Danelle trusts Rob 100%, a cornerstone of Team Vision4Gold.

 

What makes for a successful skier-guide pairing?

Back to trust. With as low vision as Danelle has, trust between her and her guide is the foundation of their ski racing… (just so happens, of their marriage too!). Understanding each other’s language, open communication and consistency are also critical ingredients for success.