www.thetinman.org Copyright © All rights reserved.
When you have been diagnosed with a disabling disease, it is critical that you take care of yourself first so that you can do what needs to be done for others, when and where appropriate. You may be a spouse, parent, grandparent, an employee, or a caretaker of others.
Your immediate priority is taking charge of your care, managing the day to day requirements of your life, and being proactive in gathering the appropriate knowledge, resources, and tools.
The first step is to educate yourself about stiff-person syndrome.
The second step in self-care is to do an honest self-evaluation. As symptoms progress, you need to re-evaluate your status.
It helps to understand available benefits and options so you know when to apply for them.
It is important to honestly assess what you need and get the appropriate aid before the situation becomes a crisis.
An honest assessment of your abilities and limitations can be a wake up call.
The third step is to ask those closest to you for their observations which can point out areas you are oblivious to or have been unwilling to accept.
Adults cling to their independence. They are used to being the caregiver and are not eager to be the person cared for. In refusing to consider your limitations, you can push yourself to the point of worsening your overall health. Refusing to consider available benefits and services can actually limit your independence.
A self-assessment can help you discuss progression of your disease and effectiveness of treatments with your health care team.
When dealing with stiff-person syndrome, it is difficult to admit when you can no longer perform certain activities at home and socially, more so at work. There may be regulations regarding medications such as benzodiazepines that limit what you are permitted to do at work.
It is best to be proactive when it comes to communicating with your employer rather than hiding the reality and waiting for someone to notice or for a calamity to occur. You do not want to lose your job because you did not ask for help.
Being fired can not only lead to loss of income, health insurance, short and long-term disability insurance, employer-provided life insurance, and COBRA coverage, but litigation if your inability to perform your daily tasks causes harm to others. Denial can be devastating at home and on the streets as well at work.
You can learn more about your rights through The Americans With Disabilities Act portal.
This section offers tips and tools for dealing with the challenges you may face in day to day life when living with any form of disabling condition.
Loss of independence can lead to depression. Even though you will experience some physical limitations, you should not experience the type of cognitive decline that occurs in dementia and other neurodegenerative conditions. You may suffer some memory issues, partially due to the medications used to treat you. Co-existing thyroid disease and diabetes can contribute to memory problems.
Your anxiety about going out is very real. It is based on a fear of falling and startle-induced spasms, not true agoraphobia. This is something that you can overcome with counseling.
The medications you take and the startle and spasm aspect may limit your ability to drive. You will have to get creative. Relying on other people can be frustrating, for you and them. Discuss your needs with your loved ones in advance. Don’t wait until the last minute then make demands. If you ask, you may find assistance where you least expected it. Friends or coworkers may wish to help. You may find local resources you didn’t realize existed.
It is important to not cut yourself off from your favorite activities and social outlets.
Limited mobility is particularly painful for extraverts who thrive on social interaction, but even introverts need an infusion of friends and fun. You may need to apply a little creativity and ingenuity to the challenge. The important thing is to not give into depression and isolation.
If you love marathon running and mountain climbing, you will have to give those up, but you can find other enjoyable pastimes, hobbies, and interests to keep life from growing stagnant.
It is important that friends and family understand that though you have limitations to your mobility, you are still the same person you were before the diagnosis. You have the same desire for stimulation, satisfying work, visits with friends and family, and activities to keep your mind engaged.
Encourage people to visit. They may be unsure of what you want or need. Be good company when they do. No one wants to listen to endless details of someone’s illness, or worse, a long litany of complaints. You know who genuinely wants to specifically know how you are, and when they are asking out of politeness.
With modern technology, you no longer need to travel long distances to visit. There are free services such as Skype and Facetime that keep you connected even if geography prevents an in-person visit.
Friendship is a basic human need. Sometimes it is easier to confide in your friends than your partner or family. Friends can be your biggest support system. It is important to nurture your friendships, even when you need nurturing yourself.
You can stay in touch through e-mail, social media, and Skype or Facetime. Make sure you show an interest in them. Don’t let every encounter revolve around your health.
Keeping your relationships healthy through these challenges requires extra effort. Whatever the problems were before, they can be exacerbated.
Learn more about building and maintaining healthy relationships.
Participation in healthy and constructive leisure activities is important and meaningful part of life. Keeping your brain engaged and learning new things can improve cognitive function.
If you become housebound, or bedridden, having access to the Internet can keep you up to date on news, and provide entertainment such as online classes, support groups, movies, music, videos, games, and puzzles.
There are multiple sources for free online classes.
TED talks are entertaining lectures on a wealth of topics by some of the greatest speakers in many fields.
In addition to funny videos, YouTube video channels provide everything from educational courses, public debates, and news stories, to episodes of television shows and movies. YouTube
E-readers and audio readers can provide endless books to read, often at a very low cost. E-book reading apps are also available for most computer operating systems, meaning they can be used with any computer or tablet. Smart phones also have reading apps.
Project Gutenberg provides free downloads of thousands of books in many formats.
Audible.com provides audiobooks and audiobook apps for your phone and computer.
Check with your local library to see if they provide programs for people who cannot visit in person.
The Internet also allows you to shop if you cannot easily visit stores.
You can have many things delivered, sometimes with a fee, from clothing to groceries. Look into local grocery and food delivery services and pharmacy delivery services.
You can always find things on sites such as Amazon that sell a wide variety of items. http://www.amazon.com/
You can join virtual support groups and give back to the community through charitable outreach programs and mentoring.