My Chronic Life

When someone has difficulty with speech, reading, writing and understanding others they have a communication disorder called Aphasia. All symptoms do not have to be involved but the language disorder does. Most people that have Aphasia get it from a stroke. Some from a head injury or neurological disorder.

People with Aphasia have normal intelligence. There is a disruption with the part of the brain that controls speech not their ability to process information.

From the National Aphasia Association (NAA), here are some tips on how to communicate with a person who has this disorder:

* Make sure you have the person’s attention before communicating.
* During conversation, minimize or eliminate background noise (such as television, radio, other people) as much as possible.
* Keep communication simple but adult. Simplify your own sentence structure and reduce your own rate of speech. You don’t need to speak louder than normal but do emphasize key words. Don’t talk down to the person with aphasia.
* Encourage and use other modes of communication (writing, drawing, yes/no responses, choices, gestures, eye contact, facial expressions) in addition to speech.
* Give them time to talk and let them have a reasonable amount of time to respond. Avoid speaking for the person with aphasia except when necessary and ask permission before doing so.
* Praise all attempts to speak; make speaking a pleasant experience and provide stimulating conversation. Downplay errors and avoid frequent criticisms/corrections. Avoid insisting that each word be produced perfectly.
* Augment speech with gesture and visual aids whenever possible. Repeat a statement when necessary.
* Encourage them to be as independent as possible. Avoid being overprotective.
* Whenever possible continue normal activities (such as dinner with family, company, going out). Do not shield people with aphasia from family or friends or ignore them in a group conversation. Rather, try to involve them in family decision-making as much as possible. Keep them informed of events but avoid burdening them with day to day details.

The NAA is one of a number of non-profit groups that help people with Aphasia. These groups provide information, support, education for patients, family and medical personnel, and raise money for awareness and research. They can always make use of donations. People who feel strongly about these types of medical non-profit groups do many things to raise money. Some make monetary donations, seek donations from family and friends, leave money or stock in their wills to these groups, make donations on behalf of loved ones, etc. I’ve known people who have bequeathed property like Winter Park real estate to organizations that they feel do what is needed to find a cure or treatment.

Scleroderma is a chronic illness which is in the autoimmune category. The word is from the Greek words, “sclero” meaning hard and “derma” meaning skin.

Symptoms of Scleroderma vary greatly. Here are just a few:

• Thickening and swelling of the skin at the end of the fingers
• Raynaud’s phenomenon
• Heartburn and difficulty swallowing
• Shortness of breath
• Polymyositis

Scleroderma can be limited to the fingers or hands only. It can also cover large areas of skin. It can be systemic and damage organs such as the kidneys, esophagus, intestines and lungs.

Children are also affected by this disease. They have either Localized Scleroderma, which is the most common form or Systemic. There are many treatment approaches for both children and adults. This is often a team approach with various specialties treating a patient.

Please visit the Scleroderma Foundation for more information, to learn about recent research and how to donate your time or money.

Remember getting those back check ups as a child and teenager, where you bent over and a doctor would feel your spine? He or she was checking for Scoliosis. These types of screenings have helped improve the number of diagnoses of this spinal disorder allowing for treatment at an early age.

According to the National Scoliosis Foundation about 6 million people in the United States have a diagnosis of Scoliosis. Most people have a mild curvature of the spine (under 20 degrees). They do not usually require treatment expect for pain and physical therapy to learn how to strengthen the stomach and back muscles and to improve posture.

Screening should continue on a life long basis for any form of Scoliosis be it mild, moderate or severe. The amount of time between screenings depends on the many factors including the severity of the pain and the involvement of other parts of the body. For example a person who has a curvature that is less than 20 degrees and has no other problems may only require screening every five years. A person with 40% curvature who has had surgery may require yearly screening.

Many people, my daughter included have mild Scoliosis and live normal and healthy lives. They may need pain medications if they use their muscles the wrong way, sit on some hard teak furniture or stop doing their prescribed exercises. But other than that, there is normally no problem.

May is Asthma and Allergy Awareness Month. May 6th was the 10th year anniversary of World Asthma Day.

May is peak allergy season for most of the United States and the Asthma and Allergy Foundation of America (AAFA) is again leading the country in this month’s education, outreach and attempts to gain funding for its programs. You can use their site to download educational material, to get a pollen count according to your zip code, find a support group, learn how to set up a plan for your child at school if she or he has asthma or allergies, including food allergies and make a donation.

If you have a severe allergy that can lead to anaphylactic shock please wear some type of medical alert bracelet or necklace. Be sure to inform all doctors, your local EMS and family and friends. Carry injectable epinephrine which is available by prescription. You can go into shock in minutes and not be able to speak.

My husband and his brother and sister are all highly allergic to bee and wasp stings. They have a severe reaction. My husband always carries an Epi-Pen. My older daughter is hypersensitive to dairy. She cannot eat anything that contains dairy and has to eat specially prepared food if eating in a restaurant. My youngest daughter is allergic to mold, pollen, dust, many trees and plants. Both of my daughters had asthma, but grew out of it.

My youngest has a follow-up appointment with her Allergist as she is not responding well to her current medications. I wish that I could use gps fleet tracking for all of the things she’s allergic to and help her to avoid them!

Asthma and Allergies are very serious health conditions that can be deadly. My children were very fortunate to outgrow asthma. Many children do not.

Skin cancer is one of the most preventable types of cancer. Don’t tan, don’t use tanning beds, wear sunscreen when outdoors and see your doctor right away when you see any suspicious moles. Get skin cancer screenings.

These type of screenings are like vehicle tracking. A dermatologist will check your body over for any unusual lesions. It takes about 2-3 minutes and your whole body including your scalp will be checked. Your doctor will determine how often you need screenings depending on your age, sun exposure, family history of skin cancers, your own history of skin cancers, etc.

When you see a mole, remember ABCD:

A = Asymmetry—One side of the lesion does not look like the other.

B = Border irregularity—Margins may be notched or irregular.

C = Color—Melanomas are often a mixture of black, tan, brown, blue, red, or white.

D = Cancerous lesions are usually larger than 6 mm across (about the size of a pencil eraser), but any change in size may be significant.

If you’ve been thinking about blogging, already have a blog but desperately need another one because you’re so addicted that one isn’t enough, or you want a blog on your own domain, get ready for some important info.

Go on over to my other blog, Brain Foggles and check out my contest.

You have a chance to win an SEO optimized Wordpress Blog with one year of hosting, a customized header, your choice of theme, support and technical assistance, plugins, keyword search and help creating a niche. The value is about $125. This is open to everyone, not just those in the USA. The end date for this is May 30th. Don’t wait!

This is a perfect way for anyone with health issues to earn money from home.

It was one of those brain foggy days yesterday and so I forgot to post about Fibromyagia Awareness Day. It was held on May 12th. There were many different ways people took part in this event.

Some used the suggestion from the National Fibromyalgia Association to ask people to take on the Clothespin Challenge. That’s where you put a clothespin on your finger and leave it on as long as you can. When you are feeling the pain of that clothespin, think of the pain that people with Fibro go through every day. You can take that pin off but those of us with this chronic illness can’t. Some asked people to donate a set amount of money for each minute they kept the pin on.

Others took part in the Walk of FAME (Fibromayagia Awareness Means Everything).

You can still do something! You can help spread the word about this disease, make a donation  to the NFA or place a link to the NFA on your blog or website.

If you are doing any type of fundraiser for Fibromyalgia please let me know and I’ll be happy to post your links here.

Why not share your plans for Lupus Awareness Month or Day, which is May 10th? I know many women with Lupus and I want to help out in any way that I can to spread the news. This can help not only with more knowledge about this disease but also help to raise money for research, treatments and early diagnosis.

Please feel free to let me know if you are running a charity event of any kind. I’ll be happy to post about it here on this blog.

Lupus is a chronic illness that is autoimmune in nature. The inflammation caused by Lupus attacks many organs and systems of the body. Since this disease affects various body systems there are many symptoms which can make it difficult to diagnose. Lupus also comes and goes with episodes called “flares” or “flare ups”.

From the Mayo Clinic, here is the information on the symptoms of Lupus:

The signs and symptoms of lupus that you experience will depend on which body systems are affected by the disease. But, in general, lupus signs and symptoms may include:

* Fatigue
* Fever
* Weight loss or gain
* Joint pain, stiffness and swelling
* Butterfly-shaped rash (malar rash) on the face that covers the cheeks and bridge of the nose
* Skin lesions that appear or worsen with sun exposure
* Mouth sores
* Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud’s phenomenon)
* Shortness of breath
* Chest pain
* Dry eyes
* Easy bruising
* Anxiety
* Depression
* Memory loss

Since it is difficult to diagnose, but at the same time having Lupus without being treated for it can cause organ damage and other serious health problems, awareness about Lupus is vital.

You can take a screening test from the Lupus Foundation of America. Please answer these questions and talk to your doctor about the outcome.

IBS is Irritable Bowel Syndrome. It is important to note the word “syndrome” which means a group of symptoms. IBS affects the colon with symptoms of abdominal pain, bloating, cramping, gas, constipation or diarrhea or both.

From Mayo Clinic.com:

No one knows exactly what causes irritable bowel syndrome. The walls of the intestines are lined with layers of muscle that contract and relax as they move food from your stomach through your intestinal tract to your rectum. Normally, these muscles contract and relax in a coordinated rhythm. But if you have irritable bowel syndrome, the contractions may be stronger and last longer than normal. Food is forced through your intestines more quickly, causing gas, bloating and diarrhea. In some cases, however, the opposite occurs. Food passage slows, and stools become hard and dry.

Some researchers believe IBS is caused by changes in the nerves that control sensation or muscle contractions in the bowel. People with IBS may have a heightened sensitivity to stretching of the bowel with gas leading to pain or bloating. Others believe the central nervous system may affect the colon. And because women are twice as likely to have IBS, researchers believe that hormonal changes also play a role. Also, many women find that signs and symptoms are worse during or around their menstrual periods.

IBS is diagnosed often by your symptoms but your doctor, often a gastroenterologist may want to rule out other possible diseases by the use of tests such as a sygmoidoscopy, colonoscopy, lactose intolerance test, blood test to rule out celiac disease or a CT scan of your abdomen.

There is no cure for IBS but there are treatments that are often used on a trial basis. In other words, what works for one person, may not work for another. Diet changes are one of the main things used to help control IBS. Sometimes there are foods that trigger this syndrome. A food diary can be used to determine what may cause problems and then those foods can be avoided. Also eating smaller meals should help too.

There are some prescription medications that doctors may try as well as over the counter laxatives, fiber supplements and anti-diarrheal medications. The use of OTC’s should be discussed with your doctor and may also be used on a trial basis. Antidepressants are also prescribed. Either a tricyclic antidepressant or a selective serotonin reuptake inhibitor (SSRI) can work treat IBS. These medications not only help relieve the depression that may accompany a diagnosis of this syndrome but they can help the nerves in your colon work as they should.

Relieving stress is often another way to help reduce symptoms. A very important note here, stress does not cause IBS, but it can exacerbate symptoms. If you require help with stress counseling may be something to look into.

Please visit the IBS Research and Treatment Act link on About IBS.org. Let your voice be heard by contacting your congress person.