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Living with a Brain Condition

Understanding and Knowing You Are Not Alone:
Fortunately, effective treatments are available for numerous brain conditions but unfortunately, many individuals and their caregivers do not always seek help. Many people wrongly believe that their condition is a result of their own personal weaknesses or simply their own fault. Furthermore, many people believe that they can deal or potentially overcome their condition by themselves if they are willing to try hard enough. The reality is most cannot do that on their own without seeking other support services and assistance, and many people will experience unnecessary suffering if trying to take on their condition alone. It is okay to ask for help.
 
Links of Inspiring Personal Stories from the Brain Network Community Partners:   
 
Brain Injury Association London & Region: http://www.braininjurylondon.on.ca/index.php/WhatsNew/SurvivorVoices
 
Brain Tumour Foundation of Canada:
http://www.braintumour.ca/2764/personal-and-inspiring-stories
 
Alzheimer Society of London Middlesex:
http://alzheimerlondon.ca/mary-beth-wighton-a-person-with-dementia
 
Dale Brain Injury Services:
http://www.daleservices.on.ca/newsroom/loris-road-back-home
 
Huntington Society of Canada:
http://www.huntingtonsociety.ca/wp-content/uploads/2015/05/Newfoundland-man-raises-awareness-for-Huntington-disease-to-help-his-wife.pdf  
 
London Middlesex Suicide Prevention:
http://lmspc.ca/hope-healing-2/
 
March of Dimes:
http://modcblog.ca/
 
Parkwood Institute:
https://www.sjhc.london.on.ca/our-stories/i-am-face-brain-injury
 
 
Tips for Helping You Connect with Others with Similar Brain Health Conditions:
  • Talk to your friends, family, co-workers, and any other support systems about what you want, or what support you might be lacking, and then discuss with your health care professional what you are looking for and they will be able to provide you with their knowledge of what services might be available in your area.
  • Ask your health care provider for specific services in your area that they think might be beneficial for you to utilize
  • Join online communities on social media websites that will connect you to those who are experiencing a similar situation
  • Use an online search engine such as Google to look up support services in your area, and contact the organization directly to inquire about how you can get into contact with people who you have conditions in common with (Examples: they may direct you to support groups, online communities, local events and fundraisers, ask you to share your story in their newsletter or website etc.)
 
What are my Rights as a Patient?
In general, as a patient, you have a right to:
  • Receive safe and proper care.
  • Give or refuse consent for any procedure, and for any reason.
  • Have a medical professional clearly explain health problems and treatments to you.
  • Participate in health care decisions.
  • Ask questions and express concerns.
  • Request a second opinion; within reason.
  • Be assured that personal information is confidential.
  • Request to access your health information records.
  • Request the transfer of your health records to another medical professional; you may be charged a fee.
 
Important Tips for Living with a Brain Condition:
  • Get in touch with the specific organization that is dedicated to supporting people who are living with your diagnosis. Organizations will have access to accurate information and resources about your brain condition.
  • Know when to stop reading and researching about your diagnosis. There is an abundance helpful resources such as books, brochures, websites, and other types of information readily available to patients today. The important thing is to know when to stop reading these which may cause anxieties or other unwanted feelings that you may or may not be currently experiencing. The best option is to go right to the organization that supports your condition and an experienced medical professional in that field.
  • The power of positivity. Stay hopeful and positive about your condition. New scientific technologies and medicines are being released every day. Maintaining positive thinking can reduce your chance of experiencing depression or other mental and physical health concerns.
  • Choose the support that works best for you. Simply talking to someone about your condition can be very helpful for you. This could be a friend, a family member, an organization, a counsellor, another medical professional, or a support group.
 
How to Manage Your Relationships after a Diagnosis:
 
Communicate with your loved ones about your emotional and physical changes.
  • Be open to learning about yourself more and how your diagnosis is or may affect you and those around you.
  • Commit to strengthening your relationships with others
  • Be flexible. Changes may arise that are out of your control and you must learn to deal with them in an appropriate manner so you are less stressed out and can make decisions (if necessary) with an open mind. Decision making is often required when you have a condition, and the support of family and friends is often vital.
  • Keep reaching out to loved ones. Some brain conditions can have effect on your energy level but it is important to reach out to loved ones when you can. Often talking to someone can elevate your mood.
  • Intimate relationships can potentially alter as a result of a brain condition. A loss of sexual desires, feelings, and/or interest might occur. It is important to remain open with your partner about how you are feeling. Intimacy is not just sex. It also includes actions such as kissing, holding hands, or sharing personal stores with one another. You and your partner can create your own version of what intimacy means for your relationship.
 
What a Quality Health Care Team Looks Like:
Having a quality health care team is essential for those living with a brain health condition, as often there will be a variety of medical appointments for you to participate in. Individuals and their families deserve the best possible treatment and support that they can receive, and the foundation of that support is a strong health care team. A health care team can be made up of medical doctors, social workers, personal caregivers, physiotherapists, and group facilitators are among the many.  

A Quality Health Care Team Might Consist of People Who…
  • Work directly with the brain health condition that you are experiencing
  • Are reliable to tend to your health care needs
  • Are knowledgeable about the diagnosis, treatments, and what services are available to patients and their families
  • Have the ability to think critically and collaborate effectively while always keeping patient and families best interest in mind
  • Have a strong solid understanding of what a quality health care system looks like
  • Have strong communication skills
 
Being Aware of What to Expect:
All brain health conditions are different. The best way to find out what to expect from your condition is to contact medical professionals and organizations that work directly with your disorder. Stress, anxiety, and other difficulties may arise when people are unaware of the details of their condition. When patients and families understand more about their symptoms, diagnosis, and treatments, they are often more able to cope with their illness (e.g., by adjusting to stressful situations and working to overcome issues). Using the health care system more effectively and experiencing less psychological distress are also benefits of being aware of your situation.
 
Common Stressors as a Result of Your Condition That Might Impact You:
  • Physical health changes
  • Mental health changes
  • Feeling a sense of loss (e.g., a loss of self, a job, mobility, or unable to participate in a certain activity you were once able to)
  • Uncertainty
  • Relationship changes
  • Having to create a new routine and balance medical appointments, family demands etc.
  • Feels of being a burden to others and your caregiver(s) due to having to rely on them
  • Financial stressors may arise
  • Adjusting to medications
These are just some of the possible stressors you may experience but it is important to be aware of the possibilities in order to plan ahead, and make decisions. Some stress is healthy, but too much can have negative effects on your health.
 
50 Common Signs and Symptoms of Stress: (extracted from http://www.stress.org/stress-effects/ )

1. Frequent headaches, jaw clenching or pain 26. Insomnia, nightmares, disturbing dreams
2. Gritting, grinding teeth 27. Difficulty concentrating, racing thoughts
3. Stuttering or stammering 28. Trouble learning new information
4. Tremors, trembling of lips, hands 29. Forgetfulness, disorganization, confusion
5. Neck ache, back pain, muscle spasms 30. Difficulty in making decisions
6. Light headedness, faintness, dizziness 31. Feeling overloaded or overwhelmed
7. Ringing, buzzing or “popping sounds 32. Frequent crying spells or suicidal thoughts
8. Frequent blushing, sweating 33. Feelings of loneliness or worthlessness
9. Cold or sweaty hands, feet 34. Little interest in appearance, punctuality
10. Dry mouth, problems swallowing 35. Nervous habits, fidgeting, feet tapping
11. Frequent colds, infections, herpes sores 36. Increased frustration, irritability, edginess
12. Rashes, itching, hives, “goose bumps” 37. Overreaction to petty annoyances
13. Unexplained or frequent “allergy” attacks 38. Increased number of minor accidents
14. Heartburn, stomach pain, nausea 39. Obsessive or compulsive behavior
15. Excess belching, flatulence 40. Reduced work efficiency or productivity
16. Constipation, diarrhea, loss of control 41. Lies or excuses to cover up poor work
17. Difficulty breathing, frequent sighing 42. Rapid or mumbled speech
18. Sudden attacks of life threatening panic 43. Excessive defensiveness or suspiciousness
19. Chest pain, palpitations, rapid pulse 44. Problems in communication, sharing
20. Frequent urination 45. Social withdrawal and isolation
21. Diminished sexual desire or performance 46. Constant tiredness, weakness, fatigue
22. Excess anxiety, worry, guilt, nervousness 47. Frequent use of over-the-counter drugs
23. Increased anger, frustration, hostility 48. Weight gain or loss without diet
24. Depression, frequent or wild mood swings 49. Increased smoking, alcohol or drug use
25. Increased or decreased appetite 50. Excessive gambling or impulse buying

Activities that May Aid in Reducing Your Stress and Anxieties:
  • Journaling, Blogging or using social media to share your story
  • Drawing or scrapbooking, writing poetry etc.
  • Creating a Legacy Binder: a compilation of your favourite memories, milestones of your diagnosis, sharing the difficulties happening in your life at a given time, using pictures, inspiring quotes, including your support team or any of your mentors. This binder or scrapbook can also be valuable to show your growth, the relationships you’ve made, and giving you and your family a product of everything that is meaningful to you.
  • Being physically active
  • Meditation
  • Reading
  • Laughing
  • Spending time with friends and family
  • Listening to music
Click here to view the Stress Relief Activities PDF (shown below)