Presented by DKBmed and Kristina Robinson (HSG Founder & individual with CF)
For the past three years, I have been committed to tackling the unique challenges of aging with Cystic Fibrosis (CF). This area of work is deeply personal because I was diagnosed with CF. By leveraging my first-hand experience of living with this disease and nearly two decades of working as a community health professional, I'm excited to share five tips for aging well with CF.
TIP #1: Enhance Your Understanding
Enhancing your understanding is an ongoing process. The subject of aging with CF is multifaceted and information in this subject is growing.
Communication can improve your care, asking questions and engaging in dialog can help you to educate yourself about cystic fibrosis, its various symptoms, treatments, and potential complications.
You can also seek out reliable and diverse sources of information including books, articles, research papers, along with reputable websites.
By engaging in active learning you can stay informed about the latest research and advancements in cystic fibrosis.
Subscribing to relevant newsletters, following experts, and participating in CF community networks and virtual events can help ensure your knowledge is current and relevant. Use this knowledge to better understand your CF and how you are experiencing it. CF is unique in that no two people with CF are exactly the same.
Knowing more about your disease can empower you to make informed decisions and be an active partner in the development of your care plan. As you acquire new information discuss questions or concerns with your healthcare team. Not only does this ensure you have accurate information it can be a great conversation starter.
Above all , Speak up! Only you are your best advocate. It’s vital to your health to bring attention to issues or concerns you have about what you are experiencing, symptoms, complications, treatments and medications.
TIP #2: Nurture Partnerships
As we age, forming and maintaining partnerships can be a challenge. Life's priorities and even our health may make it hard to keep up with our “inner circle”. It's important to build a solid support system.
Cultivate the relationships you have with loved ones as this is a great system of support because they can provide emotional support, assist with daily activities, and accompany you to medical appointments when needed. Building strong partnerships requires effort and a give-and-take approach on both sides.
Engage with others who understand, can offer guidance and encouragement. Building partnerships requires persistence. Instead of waiting for invitations, take the initiative and keep trying to make plans with others. It could take several attempts
In building a solid support system this also means expanding your care team beyond your general CF care. Historically, CF care has been focused in the areas of pulmonary and GI, however to ensure a complete picture of your health and maintain routine aging health screenings, collaborate with specialists from diverse fields like primary care, gastroenterology, endocrinology, ENT, OB/GYN, urology, genetic counseling, rheumatology, psychiatry, physical therapy, transplant medicine, and palliative care, just to name a few. Taking the time and effort to strengthen existing partnerships and establish new ones will make a positive impact for your future and health as you age well with CF.
Tip #3: Optimize Self-Management Skills
Self-management skills are a set of behaviors that we rely on to take care of ourselves when we're not feeling well. Utilizing these skills also helps us to stay healthy, and lead happy productive lives. These are skills like problem solving, making good choices, using resources wisely, building partnerships, maintaining friendships, and having positive interactions with others. Using self-management skills is how we can take the best care of ourselves!
Taking an active role in managing your CF is crucial for aging well.
Work closely with your healthcare team to create an individualized treatment plan, that you review and update often.
Then, adhere to your treatment regimen, making notes about changes that you might experience in between appointments, and be sure to share your notes and observations with your healthcare team.
Prioritize self-care, not just your physical health but your mental health as well.
Consider exploring a workshop to help boost your self-management skills; unlike CF, we are not born with these skills.
The chronic disease self-management program is a great program to enhance your self-management skills or learn new ones. This program was created over 30 years ago and offered in person and online in English and in Spanish. It’s also available for caregivers. You can learn more about this program by visiting the Self-Management Resource Center website for details.
Tip #4: Discover Available Resources
Searching for resources is like going on a treasure hunt! Sometimes, it's as easy as doing a quick online search or making a few phone calls. Other times, it requires a bit more detective work. You can find available resources by:
Exploring educational materials and online forums from reputable sources.
Research financial assistance programs and insurance coverage options that can help with medications, treatments, and specialized care costs.
The internet is a fantastic tool for finding information. While there is plenty of helpful content, exercise caution. Don’t blindly trust everything you read online as it can lead to misunderstandings or even harmful consequences. Be sure to consult with your healthcare team before making any changes to your medical plan.
There are numerous other trustworthy aging organizations that can provide general information about aging. These organizations can offer valuable insights into general aging information and resources.
Seek out your local Area Agency on Aging, nearby Senior Center or contact 2-1-1 to find aging agencies in your area. Keep in mind that these aging agencies may not be familiar with CF... but don't be discouraged! Just turn it into an opportunity to raise awareness about our disease, its impacts and our needs. Remember new resources can only be developed and created when we raise awareness.
Tip #5: Embrace Peer Connections
Connecting with others, especially peers with CF, has become even more significant in the context of aging. If you are over 40, 50, 60, and beyond, your involvement in every aspect of the CF community is vital because together we raise awareness of our unique needs and help to shape the future of aging with CF.
Connecting with others can be empowering and uplifting:
Participate in CF virtual community events, conferences, or retreats where you can meet others facing similar challenges.
Join online groups and forums to exchange knowledge, share tips, and receive emotional support.
Engaging with peers can provide a sense of belonging, reduce feelings of isolation, and can offer valuable insights to aging with CF. Tapping into this collective knowledge makes it easier to navigate the CF landscape.
The power of connecting with others, especially peers, cannot be overstated. At Halite Solutions Group, we take pride in our virtual monthly program designed especially for seniors with CF. This program provides a valuable platform for connecting, sharing experiences, and accessing age-specific resources from fellow peers. If you or someone you know has CF and is over 40, mark your calendar for the 2nd Saturday of every month. Complete the interest form at halitesolutionsgroup.org to learn more about CF Senior Saturday’s.
Aging well with cystic fibrosis requires a proactive approach and a commitment to self-care. By enhancing your understanding, nurturing partnerships with loved ones and your healthcare team, optimizing self-management skills, discovering available resources, and embracing peer connections, you can lead a fulfilling life despite the challenges that aging with CF can present.
Remember, you are not alone in this journey. Together, we are defying perceptions, defining our future and aging well with cystic fibrosis.