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Making Adjustments to Limitations
By Michael Paravagna, M.S.
 
You just received the diagnosis, “Peripheral Neuropathy.” Questions fill the moment: “What is Peripheral Neuropathy?,” “What is going to happen to me?,” “How will this impact my life, family…employment?,” “Will I be able to do the things I enjoy doing?,” “What about coping with the on-going pain, numbness…lack of coordination?,” “How bad might things become?”

While it is important to work through this diagnosis and recognize its potential for progressing into a chronic illness and even a disability, it is also important that you take control of how your life is changing. Continue reading…
 
According to the Americans with Disabilities Act, an individual with a disability is a person who:
     - has a physical or mental impairment that substantially limits one or    more major life activities;
     - has a record of such an impairment; or
     - is regarded as having such an impairment.

Chronic, disabling conditions cause major limitations in activity for more than one of every 10 Americans, or 25 million people. Battling with a chronic illness has an immeasurable toll requiring--sooner than later--that you address the pain, distress, limitations and circumstances.

Stay informed—Know what questions you have and what resources are at your disposal. No question is off limits as its answer will put you in control. This may mean having an open dialogue with your healthcare provider about how your illness affects your day-to-day life. Look to support groups and people who have traveled down this road before you. The answers they have found might lead you to your solutions.

“Share” the disability—You may find it hard to explain your disability, especially when the disabilities is “invisible.” While some people work hard to understand the cause of their disability and ensure others understand it as well, others work just as hard to hide it. It is important that you have a strong support system—family and friends you can rely on. To build this support system, you have to “share” your illness and its impact with those you consider your support system.

Maintain your independence—It may be your experience that persons who care for you deeply want to protect you from your disability by limiting what activities you engage in. Look at the limitations you have and find a way to address the activity or function safely. For example, if you cannot tie your shoelaces, wear loafers; if you work around sharp objects and numbness is an issue, examine what protective gear might be beneficial to you. Never ask for assistance to achieve something that you are able to do independently. Your independence will serve your self-esteem.

You are a person first—Words have great power. They shape how others see you and how you see yourself. Like anything with power, words should be used with care. Terms like “Handicapped,” “suffers from” “victim of” have fallen into disfavor. Seen as patronizing, negative or overly dramatic, you have to be seen as a person first.  The “disability” should be viewed as a characteristic of yourself.  People who are deaf have insisted they are not disabled, they just communicate differently. This point can be extended to the Paralympics Games, the great works of Beethoven and countless work situations throughout the world where people who are viewed as “disabled” are performing the same wide range of tasks others in the work place are addressing.

Written by Michael Paravagna, M.S., Citywide ADA Coordinator with the City of Sacramento, this feature is one of two articles addressing “Neuropathy: A Chronic Illness, A Disability.”


 

 

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