Wednesday, May 30, 2018

Common Courtesy - Interacting with a disabled person

I remember back when I did not have any physical disabilities. I never really thought too much about some of the points made in the article below. As my Kennedy's Disease progressed, several times I found myself in a position that I needed hel. Some of the kindest people are often strangers that I met once and will probably never meet again. Regularly, I find that a single act of kindness at a moment of need is remembered for years.

The below article was published on the “How to of the Day.” To read more, please follow the link below.

How to Interact With People Who Have Disabilities

It's not uncommon to feel a bit uncertain talking to or interacting with someone who has a physical, sensory or intellectual disability. Socializing with people with disabilities need be no different from any other interactions. But, if you're not familiar with a given disability, you might fear either saying something offensive or doing the wrong thing by offering assistance. Here are some dos and don'ts to keep in mind.

1. Realize that disability is universal. Think about the friends or family members you know with disabilities. Perhaps they have arthritis or other physical limitations and are unable to walk up stairs. Perhaps they have a hearing problem, or are on a special diet due to diabetes. Disability of one kind or another is something that we all experience personally in life, eventually. Thus, we will all have times when we need a little help and understanding.

2. Learn from people in your life. If you are able to be considerate of the people you know, you will also be able to do the same for strangers. Ask the people you know how they feel, what they prefer, how they react to situations, and take your cues and lessons from them. You can use the same lessons with strangers.

3. Understand that most people with disabilities have adapted to them. Some disabilities are present from birth, and others come later in life due to accident or illness, but either way, most people learn how to adapt and take care of themselves. Most are independent in everyday living, but that does not mean they might need help at certain times.

4. When people develop disabilities later in life, it may require lots of adjusting on their part. Things that they were able to do naturally now require adaptation and patience, and there are some things they may never be able to do without assistance or assistive technology. They may need help for tasks they once did without thought. But none of this means that they can't adapt to a new way of life, and as such, while they may require your support, they do not need your pity.

5. Put yourself in their position. Don't focus on the disability. It is not important that you figure out what their particular problem is; it is only important that you treat them as an equal, talk to them as you would to anyone else, and act as you would normally act if a new person entered into your life.

6. Don't be afraid of asking what disability a person is dealing with if you feel this might help you make a situation easier for them. For example, if a person has difficulty walking, ask them if they would prefer to take the elevator instead of the stairs. Chances are, they have been asked that question a million times, and they know how to explain it in a few sentences. If the disability resulted from an accident or the person finds the information too personal, they will most likely answer that they prefer not to discuss it.

7. Ask if you can be of assistance to them, as appropriate. Never act as if you have not noticed them. Ask if you can help, but do not insist on it if they tell you they do not need help.

8. Avoid getting in the way. Move out of the way when you see someone attempting to navigate in a wheelchair. Move your feet out of the path of someone who is using a cane or a walker. If you notice that they might not be strong and steady on their feet, offer to help, but do not invade their personal space.

9. Unless asked to do so, do not touch their wheelchair or any aid device including guide, hearing or seeing-eye dog without asking.

10. Be patient. For example, if the person in front of you is slowly walking down the stairs, do not mutter under your breath or sigh deeply. Show the same kind of patience that you would want in their shoes.

11. Teach your children to be kind and understanding. Take a zero tolerance policy on laughing at someone who might look strange or funny to them. Teach them that all people have feelings, just like they do, and that they should accept their differences without judgment. It's okay for children to be curious and ask you discrete questions about disability.

12. Remember that people are, first and foremost, people. Offering help to someone with a disability should come from kindness, not a sense of pity or a perception of weakness. Seek to help others, and if you find yourself being offered help, regardless of whether you have a disability, accept it gratefully, with a smile and a thank you. Be respectful, above all else.

To read the entire article, follow this link: Interacting with People with Disabilities

Saturday, May 26, 2018

We Must Never Forget

This weekend I depart from my Kennedy's Disease posts to honor those who gave the ultimate sacrifice for their country.

Monday is Memorial Day in the United States. Originally called Decoration Day, it was first celebrated one year after the Civil War ended. Americans in various towns and cities held springtime tributes to the countless fallen soldiers by decorating their graves with flowers and reciting prayers.

On May 5, 1868, General John A. Logan, leader of an organization for Northern Civil War veterans, called for a nationwide day of remembrance later that month. “The 30th of May, 1868, is designated for the purpose of strewing with flowers, or otherwise decorating the graves of comrades who died in defense of their country during the late rebellion, and whose bodies now lie in almost every city, village and hamlet churchyard in the land,” he proclaimed. The date of Decoration Day, as he called it, was chosen because it wasn’t the anniversary of any particular battle.

Memorial Day, as Decoration Day gradually came to be known, originally honored only those lost while fighting in the Civil War. But during World War I the United States found itself embroiled in another major conflict, and the holiday evolved to commemorate American military personnel who died in all wars. For decades, Memorial Day continued to be observed on May 30, the date Logan had selected for the first Decoration Day.

In 1968, Congress passed the Uniform Monday Holiday Act, which established Memorial Day as the last Monday in May in order to create a three-day weekend for federal employees; the change went into effect in 1971. The same law also declared Memorial Day a federal holiday.

Freedom is never free

Please, take a moment this weekend to honor those who gave the ultimate sacrifice for our country. Also, remember to thank those who serve today.


Quoted Text:  History Channel

Tuesday, May 22, 2018


“Courage is not having the strength to go on;
it is going on when you don’t have the strength.”

I reread the above quote from Theodore Roosevelt this morning. It rings true and is a positive reminder for me.

I still remember a friend who was near death. The cancer had spread throughout her body. Even though she couldn’t eat, couldn’t really sleep because of the pain, and was so weak she could hardly move, she always asked how I was doing. She felt terrible that I had Kennedy’s Disease and she prayed for science to discover a cure for it. She accepted that her time on this earth was near its end, so she focused her energy and prayers on others who still might have a chance. That is real courage and strength.

I have a friend living with Kennedy’s Disease who has experienced several strokes over the last few years. He has partial paralysis on his left side including his throat. Speech is now difficult and limited to short conversations. The hands struggle to perform basic functions. Walking, and even transferring, is out of the question. Yet, he is always upbeat and positive about life. He enjoys spending time with his family and friends. And, he always finds a way to lift the spirit of others.

We all know people like this and even some who have beaten the odds. People who found a way to maintain a positive attitude during ridiculously difficult times. They are survivors–if not physically, than within our memories. Their courage supports us during our own difficult times.

My recent slide, fall, and its extremely slow recovery challenges my faith and courage. When I have the occasional lapse and my attitude slumps, I just think of these friends for a needed adjustment. How can I wimp out when they didn’t?

Saturday, May 19, 2018

Leave Your Pride at the Door


While considering a topic for my blog, the word COMPENSATE came to mind. One of the definitions of compensate is “make up for (something unwelcome or unpleasant).”

The other word that comes to mind is LEVERAGE. One of the definitions of leverage is “use (something) to improve or maximize your advantage.”

All of us living with Kennedy’s Disease have become familiar with these two actions. Early on, it wasn’t difficult to hide the onset of certain symptoms. As time marched on, however, it became more difficult to compensate for the eroding muscle strength and errant firing of the motor neurons. That is when leverage became more important.

At some point, we start using a cane or walking stick (leverage). As the condition progressed, the danger of falls became more evident. We slowed our gait (compensate) and fatigue became an issue. Later, when walking became a safety issue, we began using a scooter or wheelchair (compensate). As the arms, shoulders, hands and fingers weakened, we found tools to help (leverage), or utilized exaggerated movements to help perform even simple tasks (compensate).

It is said, “Necessity is the mother of invention.” Through the years, those of us living with Kennedy’s Disease have found ways or invented things to help compensate for, or leverage something, to help us remain mobile and as self-reliant as possible. I am amazed at all the ‘tools’ that have been re-purposed so that we can continue to live a productive life.

Then, there also comes a time where we have to swallow our pride and ask for help. By asking, we again compensate for the loss of our ability to perform a certain function. Fortunately, there are plenty of good people in this world.

For those of us living with Kennedy’s Disease, we should have a sign in our bathroom saying, 

“Leave your pride at the door. 

Everyone needs help at some time.”

Please, stay upright and stay safe.

Tuesday, May 15, 2018

Our Thoughts Control Our Lives

I mentioned in earlier posts this Rolodex on my desk called “The Attitude Builder.” There are 52 cards containing positive affirmations. On the back of each card is a short explanation of the concept. While considering my recent slide, I flipped over the next card and BAMB! There it is - the answer I need.

“The most powerful force I have is what I say to myself and believe”

As I considered the above concept, I flipped over the card and read,

I am controlled by what I accept and believe.

So, I choose to believe only things that are loving and beneficial.

There have been times in my life where my negativity created a crappy day. I wonder how many times I have asked, “What else could go wrong today?”

Living with Kennedy’s Disease is “mind over matter.” If you don’t mind, it doesn’t matter. 😜

Life doesn’t have to be as difficult as I make it sometimes. My attitude and my ‘self-talk’ can create moments of chaos or moments of joy. I’ll choose joy anytime. 

Thursday, May 10, 2018

Forming Good Habits

Living with Kennedy's Disease and its progression is never easy, but I try to make it as comfortable as possible by eliminating bad habits and creating good ones.

Often, someone mentions he or she is not as disciplined as I am. The person wishes they could find the time to exercise regularly … or quit smoking … or lose weight … or meditate … whatever. My standard response is, “If I didn’t believe it helped, I probably wouldn’t do it.” 

I find it easier to maintain a habit when I see or feel results. In the case of exercising every day, I see and feel the results. When it comes to eating healthier foods, I feel the results.

Just as important, I find it easier to change a negative habit when I can see or feel the results. For example, I quit smoking over 40 years ago because I saw and felt the negative aspects of what smoking three packs a day had upon my life and my family. I quit ‘one cigarette at a time’.

When I begin to change a habit, I often do not see or feel the beneficial results initially. At that point, I am working on faith. I believe the change will be positive in some way. For example, a few years ago I gave up eating ice cream every day. I had been indulging in this habit for over 50 years. My belief was that I would generate less phlegm by eliminating this milk product from my diet.

I did not initially say, “I will never eat ice cream again.” I told myself each time I wanted ice cream that I would wait an hour and if I still wanted it then, I would have a bowl.” Guess what? In an hour, I was doing something else and did not even think about it.

After a few weeks, there was a noticeable reduction in thick phlegm. In the last couple of years, I have given up or greatly reduced phlegm-generating products. 

I continue to do every habit, no matter what it is, one day at a time. If I ever feel an overpowering desire to break a habit, I will do it after I have waited an hour.

Sunday, May 6, 2018

Helpful Resources Available

This is a rewrite of any earlier article concerning a series of manuals available for those of us living with a progressive neuromuscular disorder like ALS and Kennedy’s Disease. The resources are available on the ALS Association website.

I explored most of the manuals and found some of the information relevant and potentially useful for those of us with SBMA. The links below are for the PDF version of the manuals.

Functioning When Mobility is Affected by ALS

Some of the topics addressed include:
  • Physical and Occupational Therapy 
  • Bone, Muscle, and Joint Problems 
  • Mobility Equipment 
  • When is it time to get a wheelchair? 
  • What types of wheelchairs are available? 
  • Power Wheelchairs 
  • Types of Seating Equipment Used with Wheelchairs 
  • Transfers without Equipment 
  • Transfers with Equipment 
  • Activities of Daily Living (ADL) 
  • Home Adaptations 
  • Ramps 
  • Stair Lifts (Chair Glides) 
  • Other Suggestions for Adapting Your Home 

Adjusting to Swallowing and Nutritional Management

Swallowing and choking, at some point in the progression of Kennedy’s Disease, can become an issue. Some of the topics addressed include:
  • What should you do if muscle weakness affects your eating habits? 
  • What can you do to control your saliva? 
  • What should you eat to maintain a balanced diet? 
  • Why should fiber be included in your diet? 
  • How many and what kind of fluids should you drink regularly? 
  • What is the most appropriate weight for you? 
  • How can you increase your intake of protein and calories? 
  • Do you need to change the consistency of the food you eat?

After the ALS Diagnosis: Coping with the “New Normal”

Some of the topics addressed include:
  • Coping with the Diagnosis 
  • Coping in Your Mind 
  • Acceptance 
  • Self-survival 
  • Feeling Different and Isolated 
  • Intimacy and Sexuality 
  • Coping with Life 

Changes in Speech and Communication Solutions

Some of the topics addressed include:
  • What can you do if your speech sounds slurred? 
  • Tips for Speaking Difficulties 
  • What can you do if other people have difficulty understanding your speech? 
  • What types of aids are available to help you access computers? 
  • Where can you find funding for these devices?

Friday, May 4, 2018

Fingers don't fail me now

Over the years, whenever the temperatures dipped, my fingers would stop working and my hands became worthless. Gloves and hand warmers helped, but it still was a problem. A few years ago, I noticed that my finger strength declined even when it was warm. I dropped things more frequently and found it difficult to pick up and hold heavier objects. In the last year, my right pinkie finger is cold and numb quite often.

Today, I have to focus when I pick things up. Otherwise, I could knock it over or drop it. The hand exercises I started several years ago help, but they do not reverse the progression of Kennedy's Disease. Below are several exercises that work for me. Do you use other exercises that work? If so, please let me know and I will post them.

1. Finger Curls
Keeping your wrist straight, extend and spread your fingers. Then make a loose fist, keeping your thumb on the outside of your fingers. Hold for 30 to 60 seconds. Release and spread your fingers wide. Repeat with both hands four to six times.

2. Claw Stretch
This stretch helps improve the range of motion in your fingers. 
  • Hold your hand out in front of you, palm facing you.
  • Bend your fingertips down to touch the base of each finger joint. Your hand should look a little like a claw.
  • Squeeze the fingers and hold for 30 to 60 seconds and release. Repeat at least four times on each hand.
3. Pinch Strengthener
This exercise helps strengthen the muscles of your fingers and thumb. It can help you turn keys, open food packages, and use the gas pump more easily. 
  • Pinch a soft foam ball or some putty between the tips of your fingers and your thumb.
  • Hold for 30 to 60 seconds.
  • Repeat 10 to 15 times on both hands. Do this exercise two to three times a week, but rest your hands for 48 hours in between sessions.
4. Finger Lift
Use this exercise to help increase the range of motion and flexibility in your fingers. 
  • Place your hand flat, palm down, on a table or other surface.
  • Gently lift one finger at a time off the table and then lower it.
  • Repeat eight to 12 times on each hand.
5. Thumb Extension
Strengthening the muscles of your thumbs can help you grab and lift heavier objects like cans and bottles.

  • Wrap a rubber band around your hand at the base of your index finger and the upper knuckle of the thumb.
  • Put your hand flat on a table.
  • Gently move your thumb away from your fingers as far as you can.
  • Hold for 30 to 60 seconds and release.
  • Repeat 10 to 15 times with both hands. You can do this exercise two to three times a week, but rest your hands for 48 hours in between sessions.
6. Thumb Flex
This exercise helps increase the range of motion in your thumbs. 
  • Start with your hand out in front of you, palm up.
  • Extend your thumb away from your other fingers as far as you can. Then bend your thumb across your palm so it touches the base of your small finger.
  • Hold for 30 to 60 seconds.
  • Repeat at least four times with both thumbs. 
  • When the above become easy, add the following: Starting with an open hand, touch your thumb to the pad just below your pinkie finger. Release and then touch your thumb to the tip of your pointer finger, ring finger, index finger, and pinkie finger, in sequence. Repeat at least six times with both thumbs. 

7. Thumb Touch
This exercise helps increase the range of motion in your thumbs, which helps with activities like picking up your toothbrush, fork and spoon, and pens when you write.

  • Hold your hand out in front of you, with your wrist straight.
  • Gently touch your thumb to each of your four fingertips, one at a time, making the shape of an "O."
  • Hold each stretch for 30 to 60 seconds. Repeat at least four times on each hand.
8. Muscle Strengthener 
  • Place your hand palm­-down on a table. 
  • Place your other hand on top of that hand, and lift up with the fingers of the hand on the bottom. You can lift the fingers all at once or one at a time.

9. Finger Joint Blocking 
  • Lay your hand palm side up on a table. With your opposite hand grasp and hold the affected finger at the middle section just below the end joint. Bend and straighten the finger at the end joint only while holding the rest of the finger straight. Repeat for each finger.
  • With your hand in the same starting position, bend and straighten the finger at the middle joint only, while holding the rest of the finger straight. Repeat for each finger.
10. Grip Strengthener
This exercise can make it easier to open door knobs and hold things without dropping them. 
  • Hold a soft ball or cylindrical object in your palm and squeeze it as hard as you can.
  • Hold for a few seconds and release.
  • Repeat 10 to 15 times on each hand. Do this exercise two to three times a week, but rest your hands for 48 hours between sessions.
Below is a visual link to the above exercises plus a few more.