Life isn’t always fair. You have just turned 15 ½ and you’ve lost feeling in your lower legs. You have spinal cord compression. Lower back surgery is absolutely necessary. I know you think that this is the end of the world, but some miracles can happen. You will experience even harder things in life. The recovery process is going to take some time, but your family and your friends will always be there to support you. You will walk again. You will be able to participate in sports again. Focus on your studies and don’t worry about dating. Your opportunities will come. You will eventually find love and you will get married. Stop worrying about what other people think. People will continue to laugh, point, and stare but the best thing that you can do is ignore it. If people ask questions, don’t be afraid to give them honest answers. Even though you don’t want to stay home on a Friday night with your parents, it’s worth it. They will always include you in their plans. They love you unconditionally.
I can’t stress enough how important it is for you to get involved as an active member of Little People of America. Consider attending some conferences. I know you’re used to being the only physically different person in your group of friends, but groups, like the LPA, will make life so much easier for you. I know that you don’t think that you’re ready for it now, but I recommend getting involved by the time you go to college. You will meet people who have faced similar obstacles in their lives and everlasting friendships will be created. With technology the way it is today, you can find ways to stay in touch with new friends who you meet, no matter where they live. In addition, you will have the opportunity to visit places where you’ve never been before. You will find love.
All of the experiences that you will have from where you are now to my age will continue to shape the story that you share during your motivational speaking and disability advocacy career. You will deliver more than one TEDx speech. I know that it’s something that you’ve always wanted to do, and it is possible. You will struggle in college, you will struggle with the job search, and you will struggle with the sudden loss of your first-born child, but all of these experiences will make you a stronger human being.
Don’t be afraid to try new things even if they don’t work out. You will end up wherever you’re meant to be. Be open to where life takes you. Treat others the way that you want to be treated in return. Don’t be afraid to share your story and passions with those who surround you. Chase after your dreams. Life’s too short to sit around and wait for them to come to you. Sharing your story will make a difference in more people’s lives than you ever imagine.
Older Becky
** This has been pulled from Becky's original blog, which you can find here.
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List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
Learn MoreWhen you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.
There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.
The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.
We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
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Explore the essential takeaways from Victoria's Webinar, along with some resources that she shared.
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