What do people affected by rare disease do now that they are being told to stay home unless a medical visit is completely essential? A global pandemic may have put many things about our lives on pause, but it does not pause the daily challenges of managing an ongoing condition.
This is the first in our series exploring how members of the AllStripes community are adapting to the COVID-19 changes, and sharing their tips for how to get through this period of quarantine.
(Diagnosed with inclusion-body myositis, or IBM)
Due to my physical limitations, it’s a challenge for me to get moving and out of the house, though I loved going to physical therapy (PT) and walking. But I did stop PT, and then subsequently, when parks closed, I had to give up my safe trails that I used for walking. Even though I try to do some of my PT exercises at home to keep moving, it’s not quite the same.
Since I am also in a clinical trial at the moment, my trial has shifted to telehealth check-ins as much as possible, and the trial is making some adjustments regarding pill supplies. I’m supposed to go for an on-site visit next month, but since the clinic may or may not be open, arrangements may be made for me to receive an in-home blood test, so we can maintain trial protocol... The long-awaited trial continues, even with COVID-19 casting a shadow. Good news!
Many feel like their entire life has been stripped from them, and in many ways, that is true. If anything, they are now a little more empathetic to what I face every day.
Since coping with my disease has already forced me to become very adaptable and flexible, I already know how to make things work for me or keep myself occupied if I can’t do what I would normally do. I try to find something that makes me feel good and happy each day. Cooking, getting lost in a [streaming] series, music and reading can be really fun!
Turn off the news, find a happy spot to visit, and go there. COVID-19 or not, happy is a great place to be, if you can find it.
(Mother to Jessica, diagnosed with NF2)
All our scheduled physician consultations have moved to virtual meetings, which is fine for discussion but obviously means the doctor cannot complete any physical examination.
I recommend writing down all the questions and concerns that you want to address with your doctor ahead of any virtual meeting so you do not forget to address them in these new circumstances.
For my pediatrician consultation, I was concerned that we would not have as much time virtually, so I emailed my pediatrician a health update along with all my key concerns/questions ahead of the call, and we worked through my email in our call to ensure nothing was overlooked. I am expecting that long-standing appointments with some physicians, surgeons and radiology will be severely delayed or postponed, and this might have an impact on making critical treatment decisions.
My advice is try not to panic, and do not delay going to the ER if any serious symptoms arise. The hospitals are well equipped to screen and protect your child from COVID-19, and delay in treatment for a serious illness may be very harmful. My daughter went to the hospital for a diagnostic EEG test and it all felt very professional with several safety measurements in place to minimize risk for everyone.
Most doctors are also available via phone and conference platforms to support you, so reach out to them if you need help or advice.
(Diagnosed with idiopathic thrombocytopenic purpura, ITP)
Telehealth has been a blessing. We can contact our doctor whenever we need her. It’s really more convenient than going to the office, and we’ll probably continue communicating online from now on.
The only problem is doing blood work, but we are trying to accomplish that through home health providers.
Step outside whenever you can. Walking barefoot in the grass helps reduce inflammation that contributes to anxiety, stress and pain.
If you can, plant some flowers or a garden. Digging in the dirt relieves stress and takes away the blues. Immersing our fingers in the cool, moist soil and inhaling the clean, earthy scent seems to leach out the cares and worries that mentally weigh us down.
The exercise, sunshine, and fresh air revitalize you and help you cope with being isolated at home.
We will continue to share experiences from our community throughout the COVID-19 pandemic. If you’d like to share your experience please email us at community@allstripes.com
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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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