MULTIPLE SCLEROSIS: MY STORY & MY ADVICE
Five years ago, Debbie felt like something wasn’t right. It took 18 months (and many painful tests) before she was diagnosed with Multiple Sclerosis (MS).
With tongue firmly planted in cheek, Debbie cites many benefits of her disease – short lines at Disneyland, better parking spaces and it justifies her house cleaning service. But, she reveals another side of her disease when she says, “You have to choose to give up or get up. Don't be sad - be pissed and keep going! Being pissed lets me keep fighting back.”
I worked with Debbie for many years – both before and after her diagnosis – and she’s ALWAYS had a great attitude. Thanks to that, her fighting spirit, advances in technology and simple updates to her workspace, she continues to work a full-time corporate job.
In honor of National MS Awareness month, I had a chat with Debbie and asked some questions about what it’s like to live with MS. Whether you have MS or know someone with MS, you’ll appreciate her responses!
Q: So, what is MS?
MS is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Nerve impulses carrying messages from the brain and spinal cord “short circuit,” causing reduced or lost body functions. The effects of MS differ from person to person. For some, it may be “clinically silent,” showing no increase in symptoms while continuing to progress; while others may experience a more steady and outward progression of the disease. Although it’s not yet known how to cure or prevent this disease, treatments are available to reduce severity and delay progression. In the US, there are about 400,000 people living with the disease and it accounts for about 2,800 deaths each year.
Q: But, you have PPMS – what is that?
A: There are 4 levels of MS. I have Primary Progressive MS (PPMS), the fastest progressing one.
Q: Tell me about your diagnosis.
A: I was diagnosed 5 years ago, after many difficult, and sometimes painful, tests. It took several doctors and about 8 months to get the final answer. The most frustrating thing is when you look fine on the outside and the doctors don't listen to you! Looking back, I probably had symptoms for several years. Unfortunately, I first realized that something was seriously wrong when we were vacationing in Hawaii. I had vertigo and heat exhaustion the entire time we were there. What a bummer!
Q: Mentally, what are some things you’ve had to change?
A: First, my level of flexibility. I was a real Type A, black & white personality. I've really had to work on that. But life is actually more fun with a little color in it!
Second, I’ve always had a good attitude, so I’m thankful for that. But, this disease is scary and frustrating, as things change daily. What I could do yesterday, I can't do tomorrow – and something I couldn't do, I can again. Attitude makes all the difference. My rule: you get 2 weeks to feel sorry for yourself. Then suck it up and move on! It really does work.
I’m very determined. I'm not letting the disease win – I’m in charge of it. Even when I feel bad, I can usually push through it. In the beginning, it was easy to give up and just sit on the couch and watch movies. Now, I force myself to do things.
Q: Physically, what are some big changes you deal with?
A: How much time do you have?
**Falling - what a pain in the butt…literally! There’s nothing worse than walking along, suddenly being on the floor, and not knowing how you got there - especially at work. It’s quite embarrassing. I fell a lot less once I sucked it up and started using a walker. I use a power chair at work, due to the size of my building.
**Vertigo - every morning for about 6 months, I felt like I was going to fall out of bed or throw up. Once I started meds, the daily vertigo got better and eventually stopped. It still flares up every once in a while, but I just have to tough it out.
**Pain – really, it’s constant. I could own stock in Aleve. I just have to suck it up and keep going.
**Heat - I live in Dallas. 'Nuff said. Thank God for Frogg Toggs bandanas!
**Exhaustion - another constant. There are medications that help, but it never completely goes away.
**Sleeplessness - did you know there are Law & Order or NCIS reruns 24 hours a day?
**My hair! It used to be thick and curly - not anymore. That bothered me more than anything else at first. But, you know what? Screw it! If the drugs make me feel better, it's worth it. I got a short, sassy pixie cut with a fun red tint, and moved on. It only takes 5 minutes to get ready in the morning. And, it does grow back, once your body gets used to the drugs.
Q: I know you love to travel – do you have any tips?
A: You CAN travel!!
**Vacations are no fun if you are exhausted or in pain, so be sure you research first. There are some great online sites for accessible vacations.
**Some vacation hot spots are more difficult to get around (older cities with buildings that aren't accessible). Some theme parks are better than others (Disney World is fabulous). Cruises are great.
**Book a room/cabin that is accessible (I suggest a room with a roll-in shower).
**Book ahead, as accessible rooms are limited.
**Research online, but book by phone - that way, there is no confusion.
**Know your limitations - a 3 hour flight is about all I can handle. If I'm going further, I book a layover so that I can stretch, eat, use the bathroom, etc.
**Rent a scooter (many companies will deliver to your hotel) - most major cities have accessible cabs/mini vans if you just ask.
**Overall, be flexible and don't stress. Who cares if you have to wait an extra 30 minutes for an accessible cab if your day is going to be easier?
Q: How have your healthcare needs changed?
A: I was healthy before, so there's been quite a few changes...
**There is no cure for MS, but drugs help slow the progression. However, they’re very expensive! Mine are about $7K per month. I learned I can work with the drug companies and they’ll help supplement the deductibles on my insurance. If you don't have insurance or aren’t able to pay the out-of-pocket expenses, DO NOT panic - the drug companies will help you out.
**Since people with MS are more prone to infection, flu shots, vaccinations, antibacterial soap, etc. are even more important.
**After going to so many specialists, the last thing I want to do is go to a regular family doctor if I’m not feeling well, but I do it! Where someone else might get a common cold, I can get pneumonia due to a compromised immune system.
**I always check with my pharmacist or doctor before using over-the-counter drugs and to check for possible drug interactions because they can cause adverse reactions with my MS meds. For example, I can’t take a Z-Pak, so I do amoxicillin instead.
**It’s important to have Vitamin D3 levels checked. Most people with MS are extremely deficient and since we can’t be in the sun and heat, most of us don’t get it naturally.
Q: What are some specific “mental” tips you’d give to others dealing with MS?
A: Some of my favorites are...
**You need a good support system. My good friends & family don't let me feel sorry for myself. They also help with day-to-day activities.
**Make your life easier, wherever possible. I don't like asking for help, but you know what? Do it. People want to help, they just don't want to offend you. Let them help! Most people are more than happy to accommodate.
**Don't isolate yourself! I did, at first. Even if I don't feel like going to an event, I make myself go and always enjoy it.
**Keep busy, even when you don't feel like it. If you can’t work, volunteer, get a hobby or get a pet. These things give you a reason to stay part of the "normal" world.
**Play the "handicap" card when you need to. Ask for an attendant at the airport, an accessible hotel room, etc. I was too stubborn in the beginning. Life is much more enjoyable now that I have accepted my abilities. There is always another way to do things! You just have to figure it out.
**Sometimes my leg muscles lock up and I can't move. I use a form of self-hypnosis - I count to 10, deep breathe and force myself to relax. It’s amazing how well it works.
**If you’re having a crappy day, give yourself a break. Who cares if you order takeout, if you are not up to cooking? Only you. It took me about a year to figure out I was my own worst enemy. Hopefully, my lessons learned can help you faster than it took me. And tomorrow is going to be better! It's all about attitude.
Q: What are some specific “health” tips you’d give to others dealing with MS?
A: Some of my favorite tips are...
**Keep a journal to track what works, what doesn't, and what makes your symptoms worse. If you can figure out your triggers, you can avoid them. Mine are heat, humidity and low blood sugar. Hard to avoid heat and humidity in Texas, but I do what I can.
**I don't sleep well anymore, but rest is vital! Do whatever it takes! If I'm in a lot of pain, I sleep slightly elevated and that really helps. Keep your spine straight. I don't use a pillow under my head, but do use one under my knees. Really helps. On a really bad night, I’ll sleep in the recliner.
**Pain pills and muscle relaxers are great, but I don't like the fuzzy way my head feels when I take them. I found that Aleve works just as well, without the side effects. Also, if I have to take a prescription, I take it before bed to avoid the side effects.
**Go to a shoe store that can help you find the right shoes. Also, use diabetic socks – they’re padded and looser. I recommend a shoehorn for bad days.
**For exercise, water aerobics are great. Find a "seniors" class that isn't too taxing. And, keep stretching.
**Treat yourself to regular massages.
**I recommend taking vitamins for energy. Everyone is different, so I suggest chatting with your physician to see what’s right for you.
Q: What are some specific “practical living” tips you’d give to others dealing with MS?
A: Here's a few I can't live without...
**Shower chair - I was terrified of slipping and falling in the shower, so this made all the difference in the world! Get one that is sturdy, allows for height adjustment and has arms.
**Lumbar Pillow - I have lesions on my spine, so this helps if I’m sitting for long periods.
**2’ grabber - it's amazing how many times you drop things when you can't bend down to pick them up. I prefer the 2’ version because the 3’ version is awkward.
**Frogg Togg cooling towel or bandana – this handy invention can drop your temperature by about 15 degrees. It’s a lot cheaper and less awkward than a cooling vest. Chilly Pads are also great.
**Comfortable chair - getting up and down was hurting my back and hip. I hate recliners, but I finally broke down and got one with a lift. Once you use it, you won’t care what it looks like!
**Rubber gripper - to open bottles and jars.
**Can opener - to open a Coke when you can't do the pull-tab.
**7 day AM/PM pill organizer – it’s a little hard to keep track of all the medications, so this is a big help.
**Walker – I avoided it for too long. You need to keep moving to stretch your muscles, even when you don't feel like it. I fell a lot, so the walker gave me confidence and helped with my balance.
**Walker accessories - get a tray or basket to carry things and a cup holder. You’ll only spill hot tea in your lap once before getting this!
**Wheelchair/Transport chair - don't wear yourself out walking when shopping! I keep a transport chair in the car and a wheelchair at work. Transport chairs are much lighter, but you need someone to push you. Side note: be nice to your "driver!" If you annoy them, they can park you and leave you!
**Portable wheelchair ramp – these are great because you can move them where you need them. The step in my garage is tough, even when walking.
**Handicap Placard - plates are permanent for a specific car. I like the placard because you can move them from car to car. Download the forms online, have your doctor sign them and take them to the DMV for processing.
**Car hand controls - I had these installed and I got my freedom back! It cost me about $900 and took 4 hours to install. There may be a program in your state to help pay for it and major car companies have programs to help pay for installation on new cars. The regular controls still work for another driver. Side note: have someone take you to an empty parking lot and PRACTICE (there are also classes you can take)!!!
Debbie will tell you that life is different with MS, but not over by a long shot. She says, “You just have to accept a new normal and choose to move forward everyday!”
Now, it’s your turn! Have you been diagnosed with MS? Or, do you know someone with MS? Do you have questions for Debbie? Comment below and we’ll get you a response!