THE TIN MAN GUIDE TO STIFF-PERSON SYNDROME
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Disclaimer: The material presented in this site is intended for public educational purposes only. The author is not offering medical or legal advice. Accuracy of information is attempted but not guaranteed. Before undertaking any diet, or health improvement program, you should consult your physician. The author is in no way liable or responsible for any bodily harm, physical, mental or emotional state of any patient reacting to any of the content on this site. Thetinman.org has not examined, reviewed or tested any product or service mentioned herein. We are not being paid to advertise or promote any product or service mentioned herein. The links are offered strictly as examples of resources available. The site assumes no responsibility or liability of any kind related to the content of external sites or the usage of any product or service referenced. Links to external sites were live at the time of creation of the link. Thetinman.org does not create content for or manage external sites. The information can be changed or removed by the external site’s administrators at any time and they are responsible for the veracity of their information. Links are provided to support our data and supply additional resources. Please report broken links to administrator@thetinman.org. Thetinman.org is not a charitable foundation. It neither accepts nor distributes donations or funds of any kind.

Top Stressors in Relationships


w Disagreements over money: how it is made, who makes it, who handles it, who spends it, and how it is spent.


w Disagreements over household chores: who does them, how they are done, when they are done.


w Disagreements over child rearing:  the types of responsibilities (dressing, grooming, feeding, transportation, leisure), how the responsibilities are allocated, how much time, resources, and finances they take up, and discipline (who is in charge, how do you discipline, when do you discipline).


w Disagreements over where to live: what type of home, the financial resources it requires, and activities that need to be done to maintain them.


w Disagreements over transportation: what type, financial resources it requires, and disparity when only one partner has access to it.


w Disagreements over extended family members: holidays and celebrations, traditions, personality clashes, how much support/influence/interference they offer, and who handles them.


w Disagreements over romance/relationship maintenance: who contributes, when, how often, quality of time spent, frequency of time spent, and financial resources allotted to it.


Whatever challenges you faced before, tossing in the diagnosis of a rare disease adds velocity to all of them. Financial, household, and transportation needs must be adjusted. Family dynamics shift. Responsibility for childcare shifts. New difficulties with relationship dynamics arise.


The diagnosis forces them to consider their own mortality. They have new worries and fears about their physical and mental function.


These concerns are areas where loved ones can offer assistance.


1. What is my new role, what can I still do?


Doing a thorough self-assessment as to what you can still do or not do is critical. Discussing it as a family will allow you to come up with creative solutions. Have realistic expectations. Be flexible and open to new opportunities. You are still a complete person, able to give and accept love. You do not have to be defined by your limitations. You still have contributions to make.


There will be daily fluctuations in how you feel and what you are capable of. Learn to flex with the flow.


It is hard to make life plans when there is so much uncertainty. No one knows exactly how much time they have. Make plans anyway.


As your partner takes on greater responsibilities, it can lead to greater resentment. Their resentment can make you feel worse about yourself and add to your sense of loss.


You need to talk to one another about how to trade tasks and responsibilities and always express gratitude. Both of you should speak plainly and calmly explain what it is like to be in your shoes. Understanding each other’s challenges encourages empathy.


2. How can I continue to carry my share of the load?


Household responsibilities may have to be renegotiated. Outside help may need to be brought in. Avoid criticism. Get creative. Don’t beat yourself up for what you can no longer do. Harness the resources and tools available. One person cannot take on the entire burden.


Plan ahead for difficult times when you can.


Ask for help when you need it. Accept it graciously when it is offered.


3. How can I participate in the family/community/social circle?


The important thing is to not let yourself become isolated. There are days when you might not feel up to interaction. Don’t stop making plans because you aren’t sure how you will feel. If the time comes, and you can’t make it, the people who care about you will understand. The rest don’t matter.


Family members can offer their assistance. If you were formerly in charge of throwing celebrations, other family members can assist or offer to take on those responsibilities. If you took care of other family members, such as elderly relatives or small children, others may have to take on some of the responsibilities or outside assistance may have to be brought in.


People that avoid you because your situation makes them uncomfortable are the ones missing out. You can’t control their behavior. Don’t try to. Don’t apologize. Don’t take it personally. It’s their issue.


Be patient with unsolicited health advice. Thank them for their concern. They have a right to their opinion, but you are not required to take their advice.


When it comes to dealing with extended family: your people are your problem; your partner’s people are their problem. Each is responsible for communication, boundary-setting, and conflict management with their side.


If you cannot participate in all of the usual activities, don’t penalize your partner or children for wishing to continue some of them. Find new things you can do together, and separately, to keep your relationships healthy.


4. How much will this affect our financial security?


It is time to take stock of where you are financially. If this diagnosis will impact the family income, how can you work together to find new ways to earn a living or gain financial assistance? What expenses can you trim? The budget may need an overhaul. Whatever your spending and saving habits have been in the past, they may have to change.


Talk openly about your feelings about the changes that will be required, if one of you must give up a job, keep a job, or change jobs. Don’t let resentment simmer.


You may need to work with a financial planner.


http://www.napfa.org/



5. How do I decide what to share and with whom?


Be honest with those closest to you. They can’t help you if they don’t know what you need.


Be clear about what you want other people to know and what you want to keep within the household.


Just because the person affected has an illness, does not mean they are suddenly an object for observation and discussion. Casual chatting or talking about someone like they aren’t there turn can feel like betrayal. You may not want your condition blasted on social media.


6. Will my partner still love me and find me desirable?


You are still the same person. There is no reason for your partner to stop caring for you. Apply creativity to your love life. Give it the time and attention it needs to thrive. Priorities may shift. Discuss these changes. If things were rocky before, it is time to rebuild. Shifts of this magnitude can destroy relationships, but it can sometimes act as the catalyst to rebuild them.


Your partner cannot read your mind. You cannot read theirs. Don’t make assumptions. Realize they will. Communication is key.


Forgive one another for minor disappointments. Show appreciation and gratitude. Develop patience with one another. If you are the partner of the patient, make an effort to reassure them that you still care for them in all ways. Even if you weren’t terribly vocal before, now is the time to change that.


Try to not direct your anger, frustration, and fears about the condition toward each other. Make it clear you are angry with the situation, not the person.


Talk openly about the challenges. It is bad to never discuss it; it is worse to discuss all the time.


It is okay to mourn the loss of the way your relation used to be. But focus on and celebrate what your relationship can still be.


Be kind. Be gracious and grateful. Be polite.


Top 10 Relationship Wreckers


If you don’t have a relationship, will SPS prevent it? No. There is someone for everyone. If you don’t go out in the world, you may never find them. So, stay engaged in activities and groups. Be wary of the internet. Online dating sites (even religion-based sites) are rife with people who prey on the vulnerable. If you haven’t met them in person, you don’t have a relationship. Never send money to someone you don’t know. See Risk of Abuse.


7. How can I deal with diminished independence?


Dealing with diminished independence is perhaps the scariest part. Reduce the fear by making sure you have the right tools and resources to manage your mobility.


It is really important to maintain equality in your relationships. Don’t let them become parent/child or nurse/patient.


Clearly state your needs on days when you need help and those when you don’t.


8. Who can I count on for assistance?


Gather support people: those you can trust to help you when you need it. Ask them to be your emergency medical contacts.


Make a list of list of things you need help with. When others ask if they can do things to help (and you’ll know who really means it and who is just being polite), you’ll have specific suggestions. Be clear in what you are asking for. Be gracious if they refuse or are unable. Always be grateful and gracious. Don’t ask someone to help you then criticize the way they do it. You may need to bring in outside assistance.


Line up a medical, financial, and legal team.


9. Who will help care for me when I can no longer care for myself?


Talk about the different eventualities and make a plan for how to deal with them before they happen. Gather the resources and tools. Anticipating problems before they occur and deciding how to handle them empowers you.


Research support services and care providers.


Have your legal and financial records in order.


10. Will I be abandoned?


Caring for a chronically ill partner, parent, or child can take a toll. Make sure you have gathered sufficient resources and tools so that you are not overwhelmed. Work to mend stressed relationships before the stress reaches the breaking point.


Learn healthy conflict resolution.


http://www.helpguide.org/articles/relationships/conflict-resolution-skills.htm


For help with serious family conflict, you may need a family mediator.


http://www.apfmnet.org/


http://www.americanbar.org/content/dam/aba/images/dispute_ resolution/Mediation_Guide_Family.pdf


http://www.mediate.com/Familymediators/


http://www.familymediationcouncil.org.uk/


If it does reach a breaking point, have a plan in place for what to do next. You might need a specialized lawyer.


http://www.specialneedsalliance.org/


http://www.americanbar.org/portals/public_resources.html


If the time comes when you have to consider assisted care, do your research and know your rights.

RELATIONSHIP HEALTH

Living with SPS  Self Care   Grooming   Dressing   Bedroom Safety   Housebound/Bedridden   

Kitchen,Cooking & Groceries  Home Care  Hiring a Service   In-Home Care   Exercise   Mobility   Driving

Managing Medications  SPS & Pregnancy   Organizing Information   Financial Aid   Legal Aid   Mental Health

Anxiety & Depression   Suicide Prevention   Relationship Health   Risk of Abuse   Venting   Caregiving

Emergency Care   Anesthesia


Disclaimer: The material presented in this site is intended for public educational purposes only. The author is not offering medical or legal advice. Accuracy of information is attempted but not guaranteed. Before undertaking any diet, or health improvement program, you should consult your physician. The author is in no way liable or responsible for any bodily harm, physical, mental or emotional state of any patient reacting to any of the content this site. Thetinman.org has not examined, reviewed or tested any product or service mentioned herein. We are not being paid to advertise or promote any product or service mentioned herein. The links are offered strictly as examples of resources available. The site assumes no responsibility or liability of any kind related to the content of external sites or the usage of any product or service referenced. Links to external sites were live at the time of creation of the link. Thetinman.org does not create content for or manage external sites. The information can be changed or removed by the external site’s administrators at any time and they are responsible for the veracity of their information. Links are provided to support our data and supply additional resources. Please report broken links to administrator@thetinman.org.