Limb-Girdle Muscular Dystrophy

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What is limb-girdle muscular dystrophy?
Limb-girdle muscular dystrophy is a term for a group of diseases that cause weakness and wasting of the muscles in the arms and legs. The muscles most affected are those closest to the body (proximal muscles), specifically the muscles of the shoulders, upper arms, pelvic area, and thighs.

The severity, age of onset, and features of limb-girdle muscle dystrophy vary among the many subtypes of this condition and may be inconsistent even within the same family. Signs and symptoms may first appear at any age and generally worsen with time, although in some cases they remain mild.

In the early stages of limb-girdle muscular dystrophy, affected individuals may have an unusual walking gait, such as waddling or walking on the balls of their feet, and may also have difficulty running. They may need to use their arms to press themselves up from a squatting position because of their weak thigh muscles. As the condition progresses, people with limb-girdle muscular dystrophy may eventually require wheelchair assistance.

Muscle wasting may cause changes in posture or in the appearance of the shoulder, back, and arm. In particular, weak shoulder muscles tend to make the shoulder blades (scapulae) “stick out” from the back, a sign known as scapular winging. Affected individuals may also have an abnormally curved lower back (lordosis) or a spine that curves to the side (scoliosis). Some develop joint stiffness (contractures) that can restrict movement in their hips, knees, ankles, or elbows. Overgrowth (hypertrophy) of the calf muscles occurs in some people with limb-girdle muscular dystrophy.

Weakening of the heart muscle (cardiomyopathy) occurs in some forms of limb-girdle muscular dystrophy. Some affected individuals experience mild to severe breathing problems related to the weakness of muscles needed for breathing.

Intelligence is generally unaffected in limb-girdle muscular dystrophy; however, developmental delay and intellectual disability have been reported in rare forms of the disorder.

How common is limb-girdle muscular dystrophy?
It is difficult to determine the prevalence of limb-girdle muscular dystrophy because its features vary and overlap with those of other muscle disorders. Prevalence estimates range from 1 in 14,500 to 1 in 123,000 individuals.

Respect Accessible Spaces

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Going out in public is often riddled with obstacles for people with disAbilities. While this is largely due to inaccessible structures like stairs and narrow doors, so many unnecessary barriers are created by able-bodied people who place themselves where they shouldn’t be. That’s not to say that someone with a disAbility has special privileges. Rather, reserved access locations are intended to give people with disAbilities equal opportunities to experience the world around them. Here are some accessible places where able-bodied people should not be:

Handicap Parking Spaces
By far, the most frustrating obstacle put in place by able-bodied people is parking illegally in handicap accessible parking spaces. Though often thought that handicap parking is one of the “perks” of having a disAbility, the reality is that it’s a necessity, not a convenience. Most people with a disAbility get around in a wheelchair accessible vehicle that’s adapted with either a foldout/in-floor ramp or a lift so they can easily get in and out of their vehicle. If they don’t have access to a parking spot with enough space, there is literally no (safe) way for them to get out of their vehicles, which directly prevents them from getting where they need to go.

There are countless times when entering many parking lots that you’ll find that the only accessible spots are occupied by someone who doesn’t have a proper license plate or a permit. It is also common that vehicles park illegally in the white/blue lines next to the accessible spots making it impossible for the owner to access their vehicle which leaves them stranded.

Parking illegally in a handicap spot denies an important means of access to all people who legitimately need the accessible spaces. Able-bodied people have an entire parking lot full of spaces to choose from; disabled people usually only have a few accessible spaces. The accessible spaces are not there for the convenience of people who are lazy, or for people who claim they just needed to run into the store for a second. Illegal use of any part of a accessible parking space is inexcusable in any situation.

Accessible restroom stalls
While using the restroom at multiple locations you will find that most stalls are empty except the accessible one. Able-bodied people see the big, roomy bathroom open and are drawn to it; it’s understandable not wanting to be cramped into a small stall. However, using accessible bathroom facilities, especially when others are available, does demonstrate that people with disabilities aren’t in society’s conscience as being just as likely to be out in public as non-disabled people.

If every other stall is taken, it’s obviously okay to use it. But since people with disAbilities cannot physically get into regular sized restroom stalls, it’s not asking too much for able-bodied people to leave the one accessible bathroom option open when there are five other empty ones that are readily available.

Accessible shower stalls
Much like accessible bathroom stalls, there’s usually only one accessible shower facility in places like shared college dormitory restrooms and gym locker rooms. The accessible stalls are roomier and they often have a fold-down seat attached to the wall. Although this may be tempting for non-disabled people who want a shower with room to dance around or have a place to rest tired feet the accessible facilities are not intended for the convenience of able-bodied people.

Apparently, this is a hard concept for people. Frequently you’ll discover that every shower stall is empty except for the accessible one.  Unfortunately it seems that able-bodied people see accessible showers as a luxury, rather than realizing that they are a necessity for disAbled people.

Accessible dressing rooms
Most stores have a large dressing room that qualifies as “accessible.” Unfortunately, they are rarely, if ever, properly labeled or guarded by store employees. Hence, some of the worst offenders of able-bodied people who block public access are the ones who use accessible dressing rooms.

Some people who actually need the accessible stall have to wait for 15-20 minutes (give/take) while able-bodied people take their time in the only accessible dressing room, even though several other regular dressing rooms are available. Able-bodied people need to realize that they have fifteen dressing rooms to choose from while people with disAbilities, that actually need an accessible room, only have one option.

Respect Accessible Spaces
If you don’t have a disAbility, then next time you just have to grab a gallon of milk or try on a bunch of shirts, please reconsider and don’t take up the only reserved accessible places. Leaving accessible places open for the people who truly need them is a super simple way to promote inclusion and acceptance of the disAbled community.

Wiper Blade Information & Maintenance

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Wiper blades should be replaced every six months to a year or as soon as you notice a difference in driving visibility. When wiper blades no longer make proper contact with the windshield surface, they can begin to squeak, chatter, skip, smear or streak reducing driving visibility.

An easy way to remember to proactively change your wiper blades is to replace them when the time changes. Whether your alarm clock is gaining or losing an hour, change all your clocks, and then replace your wiper blades.

When inspecting wiper blades, look for the following:

  • Broken frame – detachment of frame arms at joints or connection points.
  • Metal Corrosion – especially at joints and claws.
  • Visible cracks, tears, and missing pieces in the rubber squeegee’s edge.
  • Flex rubber squeegee back and forth to see if it is still flexible. Aged squeegees will have difficulty conforming to the shape of your windshield and create streaks.
  • Check squeegee wiping edge for rounded edges which can prevent the wiper blade from making strong contact with the windshield and reduces wipe quality.
  • Tug to ensure wiper blade has been securely installed on the wiper arm.
  • Check that squeegee is secure in the wiper frame.

Remember to check your wiper blades as part of your regular preventative maintenance!

Wiper Blade Maintenance Tips
Visibility is fundamental to safe driving. Although drivers depend on their vehicles’ wiper blades to clear away rain, sleet and snow, many wait to replace them until they need them the most. So remembering to maintain wiper blades regularly can maximize visibility, efficiency and reliability.

Wiper blades deteriorate due to many environmental factors including:

  • Sun: Ultraviolet light and ozone deterioration
  • Oil: Car waxes and exhaust hold rubber-deteriorating oil
  • Airborne debris: Sand, mud and dust carried in the wind
  • Moisture: Acid rain and salt water (in moist air both near the shore and inland)

Remember, wiper blades should be checked every six months and changed at least once a year. Evaluate both the rubber squeegee and the metal frames to avoid common problems such as streaking, skipping, chattering, wearing and splitting – all offenders of reduced visibility and slowed reaction time while driving.

Common Wiper Problems

  • Streaking occurs when the rubber squeegee dries, hardens and cracks. It can also be caused by tree sap, road tar and other foreign substances collected on either the glass or the blade.
  • Skipping occurs when the blade develops a curvature from lack of use (e.g. left in the ‘parked position’ for an extended length of time).
  • Wearing occurs with extensive use and is when the rubber edges are rounded instead of squared.
  • Splitting is caused when the sun’s ultraviolet rays penetrate the rubber squeegee, causing it to breakdown and separate from the frame.
  • Bent Refill Vertebra and Bent Frames cause inconsistent contact with the glass surface, creating streaking or skipping.

Avoid these common problems and extend the life of your wiper blades by following these simple steps:

  • Clean your windshield every time you fill your gas tank.
  • Gently wipe the rubber squeegee with a damp paper towel to remove any loose dirt or oil.
  • Never use your windshield wipers to de-ice your windshield. Instead, either use an ice scraper or use your defroster to melt snow and ice.
  • Pull your wiper blades away from the windshield during winter months to prevent ice build up on the rubber squeegee and to prevent them from sticking to the windshield.

Efficient wiper blades are as important to a vehicle’s safe operation as clean oil and good tires. So remember to change your wiper blades at least once a year, to inspect them frequently for wear and tear and to enjoy the view!

Beginner’s Tips: Searching for the Right Wheelchair Van

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If you’re a first-time buyer looking to purchase a wheelchair accessible vehicle things might seem a little overwhelming at first. You most likely have some questions and concerns when starting out, and that’s fine. We have several mobility vehicle experts/dealers and resources available to help you along the way.

Still, there’s never any harm in getting informed before you step onto your first lot as you look for a handicap van that meets your needs. Being equipped with information when you start looking for a mobility van will help you make a well-informed decision. It will also help you better express to us exactly what you are looking for.

There are a few basic pieces of information that can help you make your decision and learn more about accessible vans. Before heading out to shop around, there are some things you can to do prepare for your search.

  • Think about the options and features you are going to need in order to travel comfortably and without any hassle. This will give you a better idea of what sort of van you need while also giving a glimpse of what sort of price range you might be looking at.
  • Consider whether or not you’ll routinely have passengers such as family and friends and the room they might need.
  • Be realistic about the budget you have to work with. There is no sense in making another headache later on with a vehicle payment you can’t afford.

In addition to these tips, there are also several ways you can make the process easier outside of home. First and foremost, you could talk with one of our mobility consultants/experts to find out about benefits and features available to you in regards to whatever disability you may have.

We will let you try out a van before any money is put down. Take advantage of this opportunity to find out more about certain features and options that may suit your needs. Most of all, make sure you can ride comfortably.