Social Media – Making Connections Through Technology

A primer on social media.

By: Alisa Brownlee

We are a society that is now connected through Facebook, Twitter and other media sites, which can be accessed through phones, computers, tablets, and other devices. It’s a part of our world, and many people with ALS want to remain connected and may want to share their journey with others and find other people with this diagnosis for friendship and support.

As a by-product of ALS, many people are more socially isolated. People find going out more difficult or virtually impossible. Getting out can also be burdensome to a caregiver. Consequently, many choose to stay at home and frequently connect with others on the Internet. Even those who cannot speak find connecting through texting, emailing, or posting on Facebook or Twitter an excellent way to share their thoughts.

In one day on the Internet:

• 294 billion emails are sent
• 2 million blog posts are written (enough to fill TIME magazine for 770 million years)
• 172 million people visit Facebook
• 40 million visit Twitter
• 22 million visit LinkedIn
• 20 million visit Google+
• 17 million visit Pinterest
• 4.7 billion minutes are spent on Facebook
• 532 million statuses are updated
• 250 million photos are uploaded
• 22 million hours of TV and movies are watched on Netflix
• 864,000 hours of video are uploaded to YouTube
• More than 35 million apps are downloaded
• More iPhones are sold than people are born

*Source: The Social Skinny

Twitter, Facebook, You Tube, LinkedIn, Pinterest, Google+ and other sites have given users a format to share moments of their lives, highlight important subjects, show pictures and advocate for an important cause. Social media also enables people to connect with others in a format that was not possible in the past.

Launched in 2004, Facebook is a social network site that requires users to register before using the site. After which, they may create a personal profile, add other users as friends, and exchange messages, including automatic notifications when they update their profile. Users may join common-interest user groups, organized by workplace, school, church, etc. They can categorize friends into lists such as “People from Work” or “Close Friends.” Anyone on Facebook can connect with other people with ALS by searching for “The ALS Association,” “ALS,” “MND,” or “Lou Gehrig’s Disease.” Another approach is to “friend” The ALS Association Greater New York Chapter by clicking here to get event information, care services notices, public policy updates and research news.

Twitter is an online social networking and microblogging service that enables users to send and read text-based posts of up to 140 characters, known as “tweets.” It was created in March 2006 and has gained tremendous popularity. One way to enhance your Twitter experience is to use hash tags. This means that one places the number sign in the search box before a word or phrase, such as #ALS, #MND, #Lou Gehrig’s Disease. The ALS Association and many chapters have Twitter feeds. User IDs are identified by using “@” and the name, such as The ALS Association Greater New York Chapter: @ALSofGNY and The Walk to Defeat ALS: @walktodefeatals

Pinterest is a pinboard-style social photo sharing website. This service allows users to create and manage theme-based image collections. The site’s mission statement is to “connect everyone in the world through the things they find interesting.”

YouTube is a video-sharing website, created in 2005, where users can upload, view and share videos. You Tube has a variety of user-generated video content including movie clips, TV clips, and music videos, as well as amateur content such as video blogging and short original videos. Most of the content on YouTube has been uploaded by individuals, although media corporations including CBS, BBC, VEVO, Hulu, and other organizations offer some of their material as part of the YouTube “partnership program.” The ALS Association and chapters often upload videos about ALS, public service announcements, and other ALS-related information. You can find this by doing a search for “ALS Association Greater New York Chapter” or “ALS.” There are fantastic videos showing people with ALS using assistive technology and communication devices, which may prove useful for people who need to understand this technology.

Many people have personal blogs that enable a user to post thoughts, pictures, news articles, and other information. Blogs are free and are offered on such sites as Blogspot and WordPress. In addition, Tumblr is a micro blogging site that bridges the gap between twitter and blogging.

Click here to head over to the ALS Association Greater New York Chapter’s homepage and scroll down to find out where you can connect with us on social media.

For more information about communicating online, click here.

Feeding Tubes: When, Why, and How

Written by: Theresa Imperato, RN, Lorraine Danowski, RD

What is a feeding tube?
A small, flexible tube, about ¼” in diameter that is an alternative route for nourishment and hydration.

Types of Tubes
The kind of tube recommended for people with ALS is the PEG – (Percutaneous (through the skin) Endoscopic (into the GI tract) Gastrostomy (hole in the stomach.)
Other kinds of tubes – Nasogastric – NG tube, Jejunostomy – J-tube

When should I consider getting a feeding tube?

  • When nutrition is insufficient, as documented through lab values, patient’s own report or clinical signs
  • When hydration is insufficient
  • When ALS affects the muscles involved in eating: i.e. chewing, moving food in your mouth and swallowing.
  • When eating leads to fatigue and one has difficulty eating enough to sufficiently nourish your body.
  • When noticeable weight loss, malnutrition and dehydration are present.
  • When decreased energy and increased fatigue accelerates the progression of weakness.
  • When dysphagia (difficulty swallowing) occurs on a consistent basis.
  • When aspiration (food or liquid taken through the mouth going down the windpipe and into the lungs) is suspected. Patients who aspirate are at a higher risk for pneumonia or infection.

What are the advantages of getting a feeding tube?

  • To maintain hydration and a safe way to administer medications.
  • To have a decreased risk of aspiration pneumonia.
  • To decrease the risk of choking, chewing or swallowing problems when eating.
  • To help you maintain weight, reduce fatigue and improve your resistance to infection.
  • To conserve energy and time getting your food by mouth, simplify your meals, and reserve energy for other activities.

What are some reasons people don’t want a feeding tube?

  • Insertion of a tube is a surgical procedure.
  • Fear of potential side effects:
    • A slight risk of infection at the tube site.
    • Pain or discomfort at site of insertion
  • It does not prevent the progression of ALS.
  • Lack of control over the disease.

How will I know if a PEG tube is right for me?

  • If you feel that the advantages of a PEG outweigh the disadvantages, the tube may be right for you.
  • If you are spending more than an hour for your meals; if you feel like meals are a struggle (choking, gagging).
  • If you have lost more than 10% of your weight, or if you are dehydrated it may be a good time to consider a PEG.

When is the right time to have a PEG placed?

  • Most doctors recommend getting a PEG early – before you absolutely need one.
  • At a FVC 50% or greater
  • Those considering a PEG should know that the sooner you have a PEG placed, the better your body will be able to recover from the procedure.
  • When nourishment and respiratory function is better, the procedure can be done with less difficulty and decreased risk of respiratory problems during or after the procedure.
  • When Food intake drops below the recommended levels of the following servings per day
    • Three or more servings of meat or protein alternative.
    • Two or more servings of milk or yogurt.
    • Five or more servings fruits and vegetables.
    • Six to Eleven servings of grains and starches.
    • Four to Seven servings of fats.
    • When Food intake drops

Dehydration

  • 6-8 8oz glasses of water or non-caffeinated beverage is usually required per day.
  • Certain foods that are liquid at room temperature may also contribute to hydration such as sherbet, gelatin and ice cream.
  • Fluid intake also helps relieve constipation, maintains bladder function and keeps the lungs clear.

Can the PEG be removed?

  • The PEG can be removed at any time, for any reason.
  • The tube is simply removed from the opening and the skin closes up in time.
  • The removal of the PEG is virtually painless.

Can I still eat with a PEG?

  • This depends on your ability to swallow safely.
  • Your speech pathologist and nutritionist will discuss with you what kinds of foods you can safely eat.
  • Many people initially use the tube solely for liquids and medication and as problems with swallowing progress, the PEG is more utilized.
  • Ultimately, the PEG can be used as the sole method of nutrition.

Can I take medications through the tube?
Yes, these are your options:

  • Some medications come in liquid form and they can be easily put down the tube.
  • Some medications come only in pills, most can be crushed, dissolved in water and put through the PEG
  • Verify with your pharmacist which medications can be crushed, dissolved or are available as liquid

How is the tube placed?

  • Usually done by endoscopic technique
  • The procedure is usually done under mild sedation (so you are in a twilight sleep state) with a local anesthetic.
  • Rarely the placement of the tube is done under general anesthesia.
  • Placement of the tube takes less than thirty minutes.
  • A long endoscope is passed through the mouth, and into the stomach for visualization. There is a light at the tip of the endoscope that can be seen through the abdominal wall. A small incision is made externally at the location of the light and then the tube is threaded into the stomach and secured.

Recovery from tube placement

  • Recovery from the sedation is usually within hours and the feedings begin within a day or two.
  • An overnight stay to assure the patient’s tolerance to the feeding and for teaching of tube care to be started.
  • Home care options are also put into place


Formula selection

  • Formulas may contain different calorie concentrations so that feedings may be accomplished with less volume (Jevity or ultracal are 1Calorie per ml vs. Pulmocare or Respalor which is 1.5 Calories per ml)These are just a few examples.
  • Many formulas now contain fiber to prevent constipation.
  • Disease specific formulas may also be prescribed
  • How many Calories are necessary to maintain proper nutrition?
    • 25 Cals/kg =weight maintenance
    • 30 Cals/kg=weight gain
    • 35 Cals/kg=Calories for a highly stressed individual (i.e. recuperation from surgery etc)
    • For example, a 127 lb woman or 58 kgs x 25 Cals =1440 Cals.

How is the formula administered?

  • Bolus – A large quantity of formula is sent through the tube in a short period of time
  • Gravity feed – One can of formula given at a time, is placed in a bag and allowed to flow in over 30 minutes
  • Continuous Feed – a pump delivered a constant amount of formula over a long period of time.

What goes down the tube?

  • Formula
  • Water
  • Most medications
  • Carbonated beverages (club soda, but never cola)
  • Enzyme treatments
  • Electrolyte replacement solution-under medical supervision

What if I have more questions?
This document is just to give you a basic understanding of what a feeding tube is. If you have more questions, please call your clinic nurse coordinator, or call The ALS Association at
1-800-672-8857

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New Report: Practice Parameter: Care of Patient with ALS

Practice Parameter: The Care of the Patient with Amyotrophic Lateral Sclerosis
Report of the Quality Standards Subcommittee of the American Academy of Neurology

New guidelines from the American Academy of Neurology released in October, 2009 identify the most effective treatments for amyotrophic lateral sclerosis.

Click here to view the Practice Parameter

(This link will bring you to the AAN website)

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