Happy Holidays

May the spirit of this holiday season

live within you throughout the coming year

Where there is light …

there is hope

Interacting with a disabled person

This article was published on the “How to of the Day” last week. It was edited by eighteen people. I have published a portion of the article. To read more, please follow the link below.

I remember back when I didn’t 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, I found myself several times in a position that I needed help or understanding. 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.
 

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. To ensure that you start off on the right track, here are some dos and don'ts to keep in mind.
Steps

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, or have a visual impairment and wear glasses. Disability of one kind or another is something that we all experience personally in life, sooner or later. 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.

• 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.

4. Put yourself in their position. How do you want others to treat you? Talk to people with disabilities as you would anyone else. Welcome them if they are new in your class or workplace. Never stare at them or act condescending or patronizing. 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.

• 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 (like asking a person if they would prefer to take the elevator with you instead of the stairs if you see they have trouble walking). Chances are, they've 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.

5. Casually and naturally 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. If they accept, help as you would anyone else, and follow their directions. Be friendly, be considerate and be supportive.

• Don't be afraid to offend anyone as long as you are polite and courteous. You don't have to be ashamed of being interested in people. If you want to verbalize your feelings, you can say you didn't mean to offend. The other person will probably reassure you. This way, nobody feels awkward and you don't have to avoid each other for the rest of the time. Questions don't hurt, but ignorance does.

6. 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 help verbally first. Don't invade their personal space, just as you would not invade anyone else's, but if they want assistance, be prepared to give it.

• Do not touch their wheelchair/any aid/guide dog/hearing dog/seeing eye dog/cat/any pet without asking. Remember their wheelchair/aid is their personal space; it's part of the person. Please respect that.

7. 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 - and may in fact want in the future yourself, if your mobility is limited by a future accident or condition.

8. 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, but it's not okay for them to single out the people they see for ridicule, or make them feel uncomfortable.

9. Remember that age and disability do not have to be related. The young can have disabilities. Likewise, don't assume that all old people have disabilities. While growing old can impact someone's hearing, eyesight, and mobility, disability has much less to do with age than the stereotypes suggest.

10. 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.

• Simply ignoring a person with a disability because you think the person may not want to discuss it may make the person feel inadequate. They may think that you don't want to deal with them as a fellow human being or that you are trying to avoid being asked for help. Acknowledge them like you would any other person. While disability does not define them, it is a part of their reality, and simply not acknowledging that it's there is like only acknowledging them in part.

11. Be respectful, above all else. Just because someone is disabled does not mean they should be treated with any less respect than anyone else. View others as people, not impairments. Focus on the person at hand, and their individual personality. If you must put a "label" on the disability, it's best to ask what terminology they prefer and stick with the terms they choose.

• Many, but not all, people with disabilities prefer "people first" language, which puts the name or person before the disability. For example, you would say "Robert has cerebral palsy," "Leslie is partially sighted," or "Sarah uses a wheelchair," rather than saying he "is mentally challenged/handicapped" (both of which are often seen as patronizing terms) or referring to "the blind girl" or "the girl in the wheelchair."

Taking a moment to say, “Thank You”

It is Thanksgiving in the USA today. A tradition in my family is to take a moment before we eat to give thanks.  Keeping with that tradition …

Thank you ... every one of you ... for your strength, your support, and your perseverance.

Remember ... never lose hope. With faith and hope, all things are possible.
 

Working together we do make a difference.

Kennedy’s Disease Research

Over the last few years I have written several articles about research and research related to Kennedy’s Disease.  Below are links to several of these articles.  In late November, I hope to have some updates on current research that was reported upon at the annual conference of the Kennedy’s Disease Association being held in early November.

• http://kennedysdisease.blogspot.com/2013/08/kennedys-disease-research-grant.html
• http://kennedysdisease.blogspot.com/2013/05/another-potential-opportunity.html
• http://kennedysdisease.blogspot.com/2013/03/slowing-kennedys-disease-progression.html
• http://kennedysdisease.blogspot.com/2012/09/igf-1-continues-to-show-promise.html
• http://kennedysdisease.blogspot.com/2012/07/research-update.html
• http://kennedysdisease.blogspot.com/2012/07/role-of-technology-in-research.html
• http://kennedysdisease.blogspot.com/2011/12/research-update-on-androgen-receptor.html
• http://kennedysdisease.blogspot.com/2011/11/kennedys-disease-and-recent-research.html
• http://kennedysdisease.blogspot.com/2011/10/kda-awards-65000-in-research-grants.html
• http://kennedysdisease.blogspot.com/2011/09/are-all-cams-elixirs-and-snake-oil.html
• http://kennedysdisease.blogspot.com/2011/08/researchers-found-cause-of-als.html
• http://kennedysdisease.blogspot.com/2011/06/stem-cell-research-progress-and.html
• http://kennedysdisease.blogspot.com/2011/06/clinical-research-study-on-kennedys.html
• http://kennedysdisease.blogspot.com/2011/02/new-research-paper-on-kennedys-disease.html
• http://kennedysdisease.blogspot.com/2011/01/good-news-on-research-front.html
• http://kennedysdisease.blogspot.com/2011/01/lay-persons-guide-to-results-of-recent.html
• http://kennedysdisease.blogspot.com/2011/01/lay-persons-guide-to-results-of-recent_11.html
• http://kennedysdisease.blogspot.com/2010/12/research-news-from-kda-conference.html
• http://kennedysdisease.blogspot.com/2010/11/stem-cell-research-controversy.html
• http://kennedysdisease.blogspot.com/2010/09/new-research-reported-on-kennedys.html
• http://kennedysdisease.blogspot.com/2010/05/clock-is-ticking-so-what-is-holdup.html
• http://kennedysdisease.blogspot.com/2009/12/research-news.html
• http://kennedysdisease.blogspot.com/2009/08/another-ray-of-hope-on-research-front.html

Mobility Needs … So many questions and considerations

Are you considering using a walker, a scooter, or a wheelchair?  There are many considerations in what will work best for you, and, are there resources out there to help you make the right decision.  Over the last several years, I have published several articles on this topic.  Below are eleven links to previously written articles that will help you make the right decisions. 

• Using a ‘seating specialist’ to help make the best decision
• http://kennedysdisease.blogspot.com/2009/11/what-heck-is-seating-specialist.html
• Evaluating your mobility needs
• http://kennedysdisease.blogspot.com/2013/02/evaluating-your-mobility-needs.html
• http://kennedysdisease.blogspot.com/2011/11/wheelchairs-what-is-right-for-me.html
• Different mobility devices for different needs
• http://kennedysdisease.blogspot.com/2009/08/mobility-devices-do-you-see-any.html
• http://kennedysdisease.blogspot.com/2009/08/mobility-devices-part-ii.html
• Traveling with a disability
• http://kennedysdisease.blogspot.com/2010/09/are-you-planning-any-air-travel-in.html
• Considerations and lessons learned for mobility vans
• http://kennedysdisease.blogspot.com/2010/04/major-investment.html
• http://kennedysdisease.blogspot.com/2010/10/tips-and-lessons-learned.html
• Ramps – for safety and greater mobility
• http://kennedysdisease.blogspot.com/2011/04/ramps-opportunity-to-increase-your.html
• Medicare and Power Wheelchairs
• http://kennedysdisease.blogspot.com/2010/01/power-wheelchairs-and-medicare-part-i.html
• http://kennedysdisease.blogspot.com/2010/01/power-wheelchairs-and-medicare-part-ii.html

Note:  The two articles on Medicare have not been updated to the 2013 provisions and restrictions.

Yes, there is no cure, but …

After, “Is there a treatment or cure?” one of the most frequently asked questions that the Kennedy’s Disease Association receives is, “What can my husband (or friend, or father) do to help ease his symptoms?”

There are some commonsense principles that can help minimize the impact of certain symptoms as well as maintain, or improve, your quality of life. Some of these are also good for your general health. A few examples follow:

• Stay active – This is the best way to maintain your quality of life. Keep engaged in activities that stimulate your mind, spirit and body. Look for new activities and hobbies that will be interesting and keep you active.
• Stay engaged – Maintaining a support system is critical to your mental and emotional health. Family and friends help keep your mind stimulated. A good laugh is one of the healthiest activities you can participate in.
• Maintain a healthy weight – The more weight you carry, the more difficult it is to remain active and mobile. Excess weight also impacts your heart, lungs and joints.
• Exercise regularly, but smartly – Some exercise is good, but too much can be detrimental. I have found that performing light exercises every day minimizes or eliminates joint and muscle pain. It also stimulates my heart and lungs as well as my motor neurons and muscles. There is a ‘Smart Exercise Guide’ on the KDA website you might want to review. Ask your doctor to recommend a physical therapist who is familiar with progressive motor-neuron diseases. There is also a six-part series on easy exercises that can improve your ‘quality of life’ as the disease progresses.

The second best advice I can give is:

If you aren’t already active or engaged, “don’t try to add too much into your daily routine all at once.” Habits need to be changed over time.

 

• Discuss and prioritize the above opportunities with your family and friends.
• Select the highest prioritized opportunity. 
• Transform the opportunity into an activity that you feel you would enjoy doing.
• Develop a plan on how to implement the activity. Write the steps down – visualize them. Note: If you have other health issues, check with your doctor before implementing any exercise program.
• Ask for support from those who are willing to help. An exercise partner, for example makes the task more fun.
• Implement your plan.
• Track your results and review weekly how you are doing.
• If necessary, adjust your plan.

After thirty days, start the process again with the next highest prioritized activity. Thirty days later, add another one in. Within no time, you will be active, engaged, have more energy and feeling better.

The best advice I can give is:

“Stay safe." 

• Pace yourself
• Don’t overdo
• Try to make it fun.”