Children’s Eye Health and Safety month occurs while parents are getting children ready for back to school. Many children get physicals at this time of year, and vision screening should be part of this check up. These screenings are usually checking for cataracts, checking eye movement and eye alignment, and having a child reading from a chart to check for nearsightedness and farsightedness.  The American Optometric Association recommends vision screenings in children before the age of 1, and at 3 and 5 years. Unfortunately, some insurance programs don’t include vision screenings.

Children can be put at a disadvantage in school if they have a vision problem that is not diagnosed and treated. Parents and teachers should look for the signs of eye problems in children: (from Children’s Vision Information Network)

• Difficulty copying from the chalkboard
• Headaches that accompany reading and writing
• Burning, itching, watery eyes
• Holds books (or objects) close to eyes
• Tilts head to read
• Bumps into things, knocks things over

Some schools provide vision screenings each year for students, and if a problem is found parents are notified. If you do not have insurance coverage for vision screenings either with a pediatrician, optometrist or opthamologist, The Prevent Blindness America Organization has a list of specific vision programs and a list for individual states.

Do you have a child with vision problems? How was the diagnosis made?

Katie VanderKoois is a young Scoliosis Advocate, who was diagnosed with Idopathic Scoliosis at the age of six. Now as a college student majoring in Music Education, Katie is a blogger,  and is a member of forums to help inform others about brace treatment and surgeries to treat Scoliosis and offer support.

Idopathic means that there is no known cause and Scoliosis means abnormal curvatures to the spine. Katie has two curves. When she complained to her parents that her back hurt, she had MRI’s and Xrays done which showed one 18 degree curve. At 10 years old, when a checkup revealed that  she had two curves and they progressed to about 23  and 27, her doctor decided to brace . She wore 5 Boston back braces in about a 6 year period. A Boston brace is made of plastic that extends from under the arm pit to just below the hips.

Unfortunately, the braces didn’t help improve the curves, instead they worsened – to 52 degrees and 57 degrees.  Now, she was in the serious range and started to have difficulty breathing and back pain on a daily basis.

So on November 17, 2009, I had two 18 inch titanium rods screwed into my spine with 18 screws. The surgery took about 7 hours, and my surgeon also fixed my flat back syndrome. That’s when your lower back has no inward curve. So he reduced two curves, and gave me another one. While spending about a week at Shriners Children’s Hospital, I had to learn to do almost everything all over again—how to walk, stand up, hold things, sit down– basically how to move. And now I am left with perfect posture and an awesome 18 inch scar, also called “the Big Zipper”.

According to Katie, Scoliosis make your body asymmetrical. This can cause:

• Your hips and shoulders become uneven
• Your ribs to twist, making one side stick out
• One side of your chest may cave in
• One shoulder blade may protrudes out, which causes that shoulder to roll forward
• Rib humps, where one side of your back has a hump
• And other medical problems

Katie’s family has been and still are her main support system. Although she feels that her my parents were very protective, which she didn’t always like, she realizes that they meant the best and is thankful now. She also has her faith:

I am a Christian. I believe that God created this world, that we are sinners, and that because of that sin, we deserve to go to hell when we die. But I also know that God sent His only Son, Jesus Christ, to come to earth, live a perfect life, and die for our sins so that we can be right with God and live with Him forever in heaven someday. And the great news about it all is that Jesus rose from the dead, and I serve a living God! He is the ONLY reason I have gotten through what I have. It has not been easy, but He gives me such hope and joy that only He can give. And knowing that He created me for a reason, including my scoliosis, makes me so thankful for it. He is in control and does only what is best for me. If He has the power to save me from the punishment of my sin, I know He has the power to get me through any temporary trial here on earth.

Now she makes use of the internet for support and to help others. She’s a member of join WEGO Health, Daily Strength, and the National Scoliosis Foundation Forum. The NSFF has been very helpful because the members all have Scoliosis and either have gone through or are going through very similar situations. On her blog, Brace YourSelf, Katie writes about Scoliosis, her own experience with it, including how she is dealing with it emotionally.

Katie is doing well as a college student even with her practicing and playing the piano and clarinet. She doesn’t hurt much, but if she overdoes it, she knows it. She also works at the music library on campus and is thankful that she is able to shelve books and sit at her desk. Heavy lifting is not allowed and working outside can cause her pain.  Even if she isn’t hurting, I she must be careful to avoid the the rods in her back from breaking. She cannot bend her back, so things we take for granted like putting on nylons, painting my toenails, etc. are difficult.

The chairs in hair salons and the seats on airplanes cause her problems because her back doesn’t fit into them, so she is often sore after getting a haircut and taking a flight.  But, Katie’s positive outlook allows her to look at what she is able to do and focus on that. She’s also learned to make adjustments for not being able to bend her back.  And meeting new people who have been affected by Scoliosis has made her life more positive. And she’s never given up on playing volleyball, even when it became difficult to breathe. Almost 2 years post-op and she’s back as an outside hitter again! It’s definitely different,  and a little harder because of her restricted movement, but she’s having fun!

Scoliosis hasn’t stopped Katie from making plans for her future.  She’d like to be a school music teacher (general music teacher, band/choir director, etc.), have a piano studio, and teach woodwind instrumental lessons and  become a volleyball coach. She wants to give back to the Ronald McDonald House, where her parents stayed during her surgeries (at no charge) through charity events, such as a concert and a volleyball tournament.

Katie’s beautiful video gives others with Scoliosis strength to get through the tough times:

Kaite VanderKooi is an advocate for people with scoliosis. She’s worn back braces for almost 6 years and went through spinal fusion surgery at the young age of 17. Her knowledge, positive outlook and willingness to help others is a gift to the Scoliosis community.

This is an ongoing effort to spotlight people with chronic illness, health issues and disabilities who are making a contribution in some way despite their pain, sickness, etc.

I learned through an email from the MDA, that Jerry Lewis in no longer the MDA Telethon Host or the National Chairman. The link led to a two paragraph press release on the Muscular Dystrophy Association website which gave no further information. It tersely states:

The Muscular Dystrophy Association (MDA) announces that today Jerry Lewis has completed his run as its national chairman. In May, Lewis and MDA announced his retirement as host of the MDA Labor Day Telethon.

MDA Chairman of the Board of Directors, R. Rodney Howell, M.D., said, “Jerry Lewis is a world-class humanitarian and we’re forever grateful to him for his more than half century of generous service to MDA. We will not be replacing him as MDA national chairman, and he will not be appearing on the Telethon.”

I noticed that the MDA website no longer says, Welcome to MDA, Helping Jerry’s Kids. It now states, Welcome to MDA, Muscular Dystrophy Association.

Does this seem to you as if the MDA Board of Directors fired Jerry Lewis? I’m aware of his controversial statements during telethons, especially when he used the derogatory term, “faggot” on the 2007 telethon. I dislike “Jerry’s Kids” when there are many adults living with muscular dystrophy and it feels as if we, as adults are put into the same category as kids. But, he has been the face of the MDA and especially of the Telethon, which helps to raise the bulk of the money for this organization.

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It’s time for a Myasthenia Gravis flare up of 2011 since it’s summer and the heat and humidity are horrible. I’ve been so thankful that the Myasthenia Gravis has been at bay for a long time with just some normal symptoms. I’ve been going through a stressful time since November of 2010 when my daughter first began having some serious health issues. I thought the stress and going back and forth to her school, to the emergency room and to doctors would have done me in, but except for the normal weakness, fatigue and droopy eyelid, I’ve been pretty good.

But the flare up hit me about two weeks ago. I thought it was just going to be a few days, but as it got worse, I knew it was time to see my neurologist. My symptoms were total body weakness, difficulty walking, swallowing and talking and extreme fatigue. I also started to get the shakes – that’s when my muscles twitch even when I’m resting. I couldn’t even drive. A new symptom I had this time around was coughing every time I ate.

My neurologist knew right away that I was in a bad flare up. The drive to see him wore me out and I wasn’t even driving. I could hardly sit up in the chair and looked like a rag doll. Now I know where that term comes from! (Myasthenia Gravis is sometimes called the rag doll disease.)

My strength wasn’t that bad, but that’s nothing new. I have more problems with stamina than strength, plus the Mestinon was just kicking in as he examined me. But I wasn’t able to maintain my seated position for long, my both eyes were drooping and I was short of breath. My doctor explained that the coughing while eating was a signal that my swallowing was getting worse.

He increased the Mestinon from 120 mgs every 3 hours to 150 mgs every other dose and the Cellcept from 2500 mgs every day to 3000 mgs every day. If my symptoms worsen, I am to call him or go to the ER. If I don’t see any relief in one month, I am to call him.

Do you have a Myasthenia Gravis flare up every summer like me?

It is possible for a disabled person to be comfortable while at home. There are many home improvements that enable a person who needs specific adaptations, equipment for sale, help available for physical needs and assistance animals that can help secure safety. If a person becomes disabled through an accident or illness or a person is born with disabilities, that the belief is that that person must live in a facility. Sometimes there is funding available through the government, through health insurance, through non-profit organizations and through the community.

What is Needed in the Home

Go through the home and see what is needed. Do you need to remove items or add something? You can get the aid of an occupational therapist and/or the salesperson of the equipment look through your home with you. Perhaps you need to lower sinks, raise a toilet or add a ramp.  Maybe you need to add a completely new bathroom or bedroom, or do something as simple as remove throw rugs for safety.

Equipment

Ambulatory assistive devices and other forms of medical equipment to enable a person with disabilities be more independent and live at home are available online, at stores and through rehab centers. Many people learn about equipment from other people in support groups or through the suggestion of a therapist – physical therapist, occupational therapist, speech therapist, etc. Of course there are wheelchairs, canes, walkers, etc. But did you know that you can have IV equipment, hospital beds, platform lifts, mechanical breathing devices and other equipment that you associate with hospitals or facilities.

Help Available

In some cases, Registered Nurses, Licensed Practical Nurses, Certified Nurse Assistants, therapists and even live in help is available to the disabled person living at home. Even if that person has family living with them, there may need to be checkups, and respite care. If a person needs total care, an assistant may live in the home to help with various care issues – changing tracheotomy tubes, using a disabled lift, cleaning and using a g-tube. Although the person or family or friends may be able to do these tasks, a break is often needed. Also these are such delicate medical concerns, that someone in the medical profession may need to check on them frequently.

Assistance Animals

Another way to keep a disabled person safe at home is by using an assistance animal. Dogs, cats, monkeys and other animals are trained to help people with various disabilities. These animals can alert a person when they need medication, can open doors and perform tasks, and keep the person company. They are often very close to the person who is disabled as they spend a great deal of time with them. Some people develop a very strong bond especially as the animal comes to learn about their quirks and needs. These animals can be just as important as wheelchair lifts to a person in a wheelchair.

Conclusion

It is necessary for a disabled person to be comfortable at home as it is necessary for a disabled person to be safe. Make use of the agencies and medical professionals to make the decisions you need.