Here’s your diagnosis. Go home and read these pamphlets.
You’ve heard this before. And I bet you’ve even thumbed through a few of them. But you probably felt they were to generic and didn’t answer a lot of your questions.
Just think of it this way…
There was a long line of people before you getting a difficult diagnosis, and more than likely, a long line after you…
On the other hand, people are becoming more educated about their own health situations and making their own self care plans. By taking control of your own health, you will improve your chances of getting better, faster.
So, should you waste your time listening to your doctor?
Well, let me ask you this… do you have a self care plan to handle everything you need in this new life?
I’m guessing you said no. But before I teach you how to do that, I’m going to give you a little tough love.
It doesn’t serve anyone by spending your days under the covers dripping in a week of stench. Get up, take a shower, and go outside. Whether or not you want to, it’s time to face the music. Your life won’t get any better by avoiding the situation.
Are we all on board?
Great, let’s dive in!
It’s time to make a plan for how you’re going to master this new version of your life.
Fortunately, you don’t need to reinvent the wheel. I’ve laid out everything you need, and even created some tools I think you’ll find helpful.
Your self care plan will be an instruction manual for you and your caregivers to live by. It will include everything necessary to take care of you day to day. Whether you can take care of yourself or you need assistance, it’s important to get organized.
Especially if you plan on beating the dealer at his own game.
Crafting Your Plan
You can use any tool you are comfortable with to keep your plan organized. I am a fan of Evernote and Trello. Evernote because of its ability to keep tremendous amounts of information in nearly any format.
Trello is a great collaboration space where my care team can quickly access important phone numbers, create to-do lists, and assign tasks to another team member.
For example, when I need one of my caregivers to pick up my medical marijuana prescription from the dispensary, I create a card in Trello, add the caregiver’s name with a due date. That’s it.
Or, whenever I get an important document from my doctor or find an article I want my physical therapist to read, I email it directly to Evernote where I can find it later by typing a few keywords.
In fact, it’s been so helpful to me and my team, that I created a Trello board for you to download and make it part of your own self care plan.
If you already have a favorite tool that works for you, by all means, keep using it.
I suggest staying away from using a notebook. Care plans frequently change, so something online and shareable makes the most sense.
Whatever tool you use, make sure it’s easily accessible. The last thing you want to do is make it difficult to use or find, and it ends up going the way of that treadmill sitting in your den.
Here’s What to Include
Go ahead and grab the Trello board if you haven’t already. Once you have it, open it up. You’ll see I added a few lists. Contacts, Therapies, Exercises, Diet, and most importantly, To Do items with due dates.
If you’re like me, you probably a clever method for organizing the contacts in your phone. However, the one time you have an emergency, will your home health aide know to look for your cardiologist under S for “Smokin Hot Doc?”
You can keep all the important contacts in there and share it with your family. This way they can simply search for Cardiologist.
This list should include not only your doctor’s details but anyone that treats you. The home health agency, acupuncturist, shaman, pharmacy, witch doctor, and others. You could even include the name of your “guy,” in the event you run out of your favorite illicit drug. Not that I’m recommending it, of course.
What is your diagnosis or disability?
This might seem unnecessary, but how many people, caregiver wannabes, well-intentioned friends, and home health aides don’t have a clue what is wrong with you, much less let alone how to work with your new limitations?
Describe your condition in layman’s terms, along with anything important to about the way it affects you. Be as specific as possible. The last thing you want is someone guessing and you end up hurt.
For example, My right arm doesn’t bend easily. Or, bright lights cause me pain. Or, my mother in law slows the healing process.
Drugs, supplements, and vitamins
What medications are you taking?
My internal response is typically: Lady – I just spent the last half hour writing them down in your forms.
You’ll get asked this question more times than you realize, so you may as well keep them organized. When I go to any appointments, I print this out and hand it to the receptionist along with my insurance card.
Evernote is great for keeping large amounts of info at your fingertips.
Pro Tip: Add a photo of the prescription label with the Evernote mobile app to quickly see who prescribed it, the pharmacy where you picked it up, and how many refills you have left.
Don’t forget to include the vitamins!
Often overlooked, but just as important as regularly prescribed medications, are any vitamins or supplements you are taking. It might seem pointless since you don’t need a prescription to buy them, but that is the exact reason why you should tell your caregivers and doctors everything you take.
“Combining dietary supplements and medications could have dangerous and even life-threatening effects. For example, drugs for HIV/AIDS, heart disease, depression, treatments for organ transplants, and birth control pills are less effective when taken with St. John’s Wort, an herbal supplement. Depending on the medication involved, the results can be serious. ”US Food and Drug Administration, (2014). Mixing Medications and Dietary Supplements Can Endanger Your Health
I hope you agree this is important and you will include all your supplements in your self care plan.
I recommend using this format below and including these details.
|Medication name||Dose||Frequency you take it||Date you started||Notes|
|Lipitor||20 mg||Once daily||3/18/2019||Drink extra water|
This section is useful for all the nonwestern medicine and treatments you are trying. Things like acupuncture, yoga, sensory deprivation or float tanks, cupping, home trepanning, electroshock therapy, bloodletting, exorcism, or anything else your doctor doesn’t have a clue about and is probably unwilling to discuss.
Recently, marijuana has come back into question as playing a role in patients requiring higher doses of anesthesia during surgery. Don’t worry about disclosing your pot habit. I assure you, no one cares.
Physical and occupational therapies
Typically, physical and occupational therapies are provided for a limited amount of time by your insurance company. This is your opportunity to learn (read: soak) everything you possibly can. Bring someone with you to take notes, or better yet, take video.
The objective is to continue the exercises at home when you are not with your therapists.
Pro Tip: Ask the therapist how best to group the exercises.
You can include pictures or drawings, but make sure to include descriptions of each exercise in your own words.
Participation in clinical trials
While exploring treatment options, you’ll surely come across clinical trials for your condition. The decision to participate is entirely yours. You will have to weigh the risks against the benefits.
Factors such as the phase of the trial, travel requirements, out of pocket expenses, etc. I am in favor of participation in the right trial at the appropriate time.
Simply put, you already know how your condition affects you today. Why not take a calculated risk?
When properly selected, the right clinical trial could make a huge improvement in your life. There are risks, of course. And all those should be discussed with your doctor.
What to bring to the discussion with your doctor
A great place to start looking for clinical trials that might be right for you is ClinicalTrials.gov
Once you find a trial that catches your eye, jot down these pertinent details of the trial.
- Name of the trial
- Phase 1, 2, or 3?
- Lead investigator
- URL to the ClinicalTrials.gov entry
- Location of the study center nearest to you
- Frequency of visits to the study center
- Potential out of pocket costs (gas, hotels, meals, etc)
This is a good time to write down questions for your doctor. Get his or her email address and send them any questions you have before your appointment. This way the doctor can prepare for your visit and you’re not wasting time in the visit thinking up questions to ask.
Here are a few suggestions:
- What do you know about this trial?
- Do you know the lead investigators? If yes, and I decide to enroll, will you reach out to them and ask that I am enrolled right away?
- Do you have any patients participating in it? What was their feedback? Can I speak with him or her about their experience?
- Do I meet the inclusion criteria? If not, what can we do to help me meet them?
- What makes me a good or bad candidate?
- If I were to enroll in this trial, what would your concerns be?
- What risks should I be aware of?
- What other trials should I consider?
- What haven’t I asked that I should?
- Any other questions?
Pro Tip: Once you and your doctor find a trial that’s right for you, add the trial investigator’s contact info in Trello.
Participating in a clinical trial is not an easy decision, especially if you are not well versed in the nuances of how a trial works. This is why you should talk with your doctor before enrolling.
Unapproved treatments or treatments for ongoing trials
The beauty of the interwebs is the ability to connect with people in a similar situation around the world. I frequently use a website called PatientsLikeMe.com.
There I have met a community of others with ALS, and I’ve been introduced to treatments I otherwise may not have heard about.
For example, after hearing about CuATSM, Ibudilast, Leap2BeFit, and stem cell therapies, I did a tremendous amount of research into the claims I heard, the science behind the treatment, and how to get my hands on it.
Though probably not the best idea, my wonderful girlfriend Melissa tries everything first. That’s fine for the ceiling hoist and breathing machines, but trying the homogeneous colored gruel mix medicine and blenderized food might be taking it a bit far. Oh, the things you’ll do for love.
Food and food preferences
Hopefully, your condition won’t affect your ability to eat the foods you love the way you always have. Though, in many cases, ALS included, eating normally becomes a distant memory. If you’re lucky, your doctor will slap your hand and tell you to cut out salt.
If your condition is more serious, keep reading.
If you’re like me, food has an emotional connection to family and friends, events and memories, and is an important way to share experiences. To maintain that connection, we try not to deviate from the foods we love as best as possible.
This is the right time to get a nutritionist involved. They can develop a meal plan that preserves your current eating habits and preferences, and making any necessary adjustments.
Before meeting with your nutritionist, pull this information together, and then email it to them. This way they will have constructive suggestions on the day you meet.
What do you enjoy eating? I love a greasy mushroom and Swiss burger medium rare, with Sriracha and a side of crispy fries. Don’t forget the extra dirty Hendrick’s martini in a rocks glass, obviously. You should be that specific.
What things do you have trouble tolerating? For example, red sauce gives me heartburn, or I can only tolerate one particular type of feeding tube formula or anything my mother in law serves makes me sick.
Important! List any food allergies and what happens when you encounter that item.
For example, I’m allergic to peanuts and I go into anaphylaxis when I touch anything with peanuts. Or, I’m afraid my mother in law is trying to poison me by hiding shellfish in my soup.
The more you share with your nutritionist, the easier it will be to craft a meal plan that works for you. I know what you’re thinking, I’m not going on a diet.
This isn’t a diet in the traditional sense of the word. When your life is changed involuntarily, the way you used to do things will also change.
Make good use of your care team. If you want them to prioritize you in their busy practice, engage them in the process of completing the sections above. This way you come out with an actionable plan for everyone to follow.
What other things would you include in your self care plan? Tell me in the comments below.