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The diagnosis of stiff-person syndrome can be frightening and disorienting.
Educating yourself and your loved ones is the first step toward easing that fear.
Some patients have loving supportive friends and family, others lack sufficient support systems. Either way, the important thing to remember is that you are your best advocate. By stocking your coping tool kit with the right tools and information, you can maintain control over your life.
Learn when, where, and how to ask for help.
This section covers multiple areas of concern and offers tools and resources to address them.
1. Self-care: evaluate your current status and recognize where you need assistance.
2. Activities of daily living: gather the right tools when you need them.
3. Home care: assess what you can do and when you need assistance.
4. Mobility: meet the challenges and choose the solutions.
5. Managing medications: tips and tools to avoid missed doses and overdoses, which can lead to crises.
6. Mental health: coping and effective communication are tools crucial to managing your condition. Recognize when you are in trouble and learn how to ask for help and where to find it.
7. Emergency care: know the basics and share information with your support people and uninformed medical professionals.
8. Anesthesia concerns: anesthesiologists may not be aware of the special needs surrounding rare diseases. Educating yourself and providing the information to medical professionals may save your life.
9. Organizing information: the risk of memory issues and becoming incapacitated at some point necessitates that you, and your support team, have important information and resources at your fingertips.
10. Financial aid: having a rare disease that requires long-term and often expensive treatments can lead to financial distress. You may become unable to perform your current job. Be proactive. Learn your rights and explore resources.
11. Legal matters: it is essential to keep your affairs in order and to make sure you have communicated your wants and needs to your support team.
12. Advice for family and friends: whoever your support people are (family, friends, hired help, volunteer caregivers), they need tools too. Help them help you.
13. Patient stories: find commiseration and inspiration from others struggling with the same rare disease.
The Tin Man does not endorse, contribute to, or support the content, participants, or individuals administering the sites. You should always consult a medical professional before following the advice of any individual or information found on any forum.
Be careful when posting personal information on public sites. Friends, family, coworkers, your insurance company, or physicians may also see what you post, even if you think your personal settings are designated “private.”
There are two main types of Facebook groups: open and closed. Open means the general public can see and respond with comments. They are usually moderated to keep the threads on topic. In closed groups, only members of the group can see and respond to the posts.
The Internet is full of predators. There have been cases of hacking where an individual assumes your photo and a version of your name for the purposes of conning people into divulging personal information and stealing money in the guise of charity, contests, or selling fraudulent treatments or cures. There are no miracle cures for stiff-person syndrome, but there are unscrupulous people selling fake cures, supplements, and treatments. Make certain you know who you are talking to, especially via direct message.
Never divulge personal financial information on the Internet or to anyone who contacts you via the Internet.
LIVING WITH STIFF-PERSON SYNDROME
Find agencies, organizations, and online resources for treatment, benefits, and services.
Resources include where to find in-home assistance and how to address aging challenges and building a relationship with your doctor. They offer access to research about what it’s like to live with a disability.
Researches, develops, and demonstrates creative approaches to disability employment issues.
With a strong network of volunteers and partners, FODAC provides refurbished equipment and services for disabled adults and children to improve their overall quality of life.
A non-profit organization established to help families provide a secure future for their loved ones with a disability.
Grassroots, non-profit organization, that supports positive personal journeys for our community members with disabilities, their families and caregivers. Nationally, we provide information and referral via our website, our Facebook Page, and e-mail. Locally we provide one-on-one mentoring and training, ongoing support and consultation, personalized information and referral, and grants of refurbished Windows computers for home use.
Dedicated to providing quality support to people with disabilities and their families. We provide support in community-integrated settings, in their homes, and in non-traditional facility- based services.
Education, employment, housing, transportation.
Eurodis Rare disease organization for Europe.