“I’m not going to let this beat me,” Mike of Denver says of his multiple sclerosis (MS) diagnosis. “Instead, I’m staying active—going to the gym, getting out of the house. I’m just keeping a positive attitude and looking at what I’ve been blessed with—how lucky I really am. I’m just taking an inventory of life. That keeps me very positive.”
Mike was diagnosed with the disease in 2009, after years of contributing his symptoms to “growing older;” for instance, difficulty following the ball during night games in his softball league and having trouble jogging his usual five miles a day. At the gym, his regular weightlifting routine was suddenly becoming more challenging than usual.
“I figured I would just get used to it and adjust and that would be my norm,” he says of his condition. “I would just continue to move on.”
It’s hard to move on when you’re not properly diagnosed, though. His strength and balance didn’t improve, and his increasing series of doctor visits was not getting to the root of the problem. All the while, the sudden inability to function normally was a stunning drawback for this former Torrance, California jock. Yet his athletic training instilled in him a can-do attitude.
“90% of it is will,” he says of his coping and living strategies. “I keep that positive attitude and refuse to use a walker or a wheelchair. It’s extra work, but you don’t benefit if you don’t put the work in. I do physical therapy; my therapist has a background in MS, and knows exactly what to do to help my balance. I very seldom use a cane anymore, which I’m happy about.”
His battle plan was confirmed by the folks at the MS Center at Colorado University. Their advice: always stay active. Exercise.
“At first, I thought, I have enough trouble just walking down the hallway,” Mike says, “but, my gosh, I couldn’t believe the difference that it actually made. I’m usually at the gym six days a week. I ride the stationary bike, lift weights, and that really helps me move around better.”
Another life changer: Mike’s decision to bring his medical records to PicnicHealth.
The advantage of having all of your medical records in one digital Timeline:
Thanks to Mike’s information being centralized, he saved time, money and hassle. Here’s just one example:
“The last time I had my infusion,” he says, “they needed to run some extra blood tests because they didn’t have copies of my previous tests. But I was able to bring up my previous tests online. We just avoided having more tests done. Having everything at your fingertips is amazing.”
Here’s yet another benefit: “If I live here in Denver but get sick in Florida, there would be no way of getting my records,” Mike says of life without PicnicHealth.
Another advantage may help more people than yourself. If you give formal consent, PicnicHealth can allow your information to be shared—anonymously with researchers who are working on cures and treatments for your particular ailment. Your information always remains private, under the highest HIPAA compliance standards set by law. Of course, none of this happens without your explicit permission.
“Hopefully, all of this data will help others transition to the proper care in a much shorter timeline,” Mike says. And he speaks from experience. “It will be less frustrating. Adding information like this can help doctors diagnose folks quicker and offer treatments that are more aligned to their issues.”
In the meantime, Mike continues his exercise regiment, and to that add his commitment to gratitude.
“I have MS, which is not deadly,” he says. “I’m better off than a lot of folks. I have a roof over my head. I’m able to put food on the table. I have a great family and friends. I’m able to still get around. I’m not using a walker or a wheelchair. When I look at the bigger picture, being grateful for what you have makes a world of difference.”
For more information on MS, visit the National Multiple Sclerosis Society.
For more information on how you can gather your medical records for easier and secure transport and sharing, click 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 MoreIf your loved one is in the early stages of Alzheimer’s, putting a support system together might not seem like priority #1. But it’s never too soon to build a network of people that you can turn to in times of need. Cultivate connections today with the people who can be there tomorrow, or whenever you might need a hand.
You may also want to connect with other Alzheimer’s caregivers through a support group, whether it meets 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 the world of Alzheimer’s.
If your loved one is in the early stages of Alzheimer’s, putting a support system together might not seem like priority #1. But it’s never too soon to build a network of people that you can turn to in times of need. Cultivate connections today with the people who can be there tomorrow, or whenever you might need a hand.
You may also want to connect with other Alzheimer’s caregivers through a support group, whether it meets 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 the world of Alzheimer’s.
It isn’t always easy to look into the future with Alzheimer’s—but doing the legwork now will save you from stress later. If your loved one is in the early stages of illness, you can involve them in conversations about legal, financial, and long-term care planning decisions. Despite the difficulty of these topics, you’ll all feel empowered by facing them early, and you can move ahead with greater confidence.
It’s an exciting time for Alzheimer’s research, with new treatments in development and coming to market. Ask your loved one’s doctors about therapies they can try or clinical trials they can join. One easy way to participate in research is to sign up at PicnicHealth, which helps to advance Alzheimer’s science by sharing participants’ anonymous health data with some of the brightest minds in research.
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 with Alzheimer’s. And don’t forget to keep a sense of humor along the way.
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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