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Wednesday, March 13, 2013

Newly Diagnosed? Some Things to Do Now

What to Do When Everything is New

You’ve just been diagnosed with a chronic illness, and are dizzy with the thought of it. The learning curve is steep. Listening to your physician, and perhaps reading the literature that she or he has given you are both good first steps. The problem is, that going only that far leaves you in the position of waiting, and of letting time pass without action. One of the important things that many of us have learned is that letting time pass without fighting full out allows your disease to progress. The longer it progresses, the harder it seems to be to turn it around, so that you are chasing it, instead of it chasing you.

What’s a body to do? Here are some ideas from people who have been through it.

First, don’t consider your diagnosing physician the be all and end all of your medical care. Begin to assemble a team of people to support you. Start with your primary care physician (PCP) and your specialist such as the neurologist (neuro) or endocrinologist. Look into what other medical specialties might know things to help you. Add to that some practitioners of alternative treatments such as a chiropractor (chiro), acupuncturist, massage therapist, physical therapist, herbalist or naturopath.

Now, think about your support. Who else needs to be on your team from the get-go? Your family and friends are critical. Imagine, if it’s hard for you to adjust to the new diagnosis, it’s doubly hard for them. They don’t feel what you feel, and their fears about loss are different fears than yours. You might fear a stiffening body or a wheelchair in your future. A person in your family might be thinking about the loss of your contributions to family life, and the contributions you make that he or she will have to make up for somehow. Of course, if you’ve been covering your losses well, your partner might not even be thinking of losses, but just of a bit of time out for the doctor’s appointments, some medicine, and life back to normal. It will not be normal, even when it appears to be so.

When you’re ready, take a look on youtube and other video sites for short films about your disease by people who have it, or by the organizations that do work supporting research into it. Listen to voices of experience. Come back to listen again in a few months, once you have a deeper understanding of your illness.

Once you find some videos, ask your loved ones to watch them with you, or to watch the videos and then talk about them with you. It’s important for everyone to learn that even on days when you look well, this disease is still going on inside of you, and you are still spending energy in the fight against it.

Some diseases take a lot of energy from you. For example, multiple sclerosis can begin to cause fatigue without notice. Suddenly, you could be sleeping in the middle of work or play. It’s important to begin to ration your energy right from the start. Ease up a little on your commitments, and plan time to rest and heal in between activities. It’s okay to use the power scooter at the grocery store, instead of pushing the cart. Learn to save your energy for what counts, and take advantage of things that will lower the stress on your body. Part of conserving energy is learning to say “No.” Balance is more important than ever, and you are in charge of making sure you have some equilibrium in your life.

Some diseases will cause aches and pains. Your doctor will probably have some prescriptions to try. There’s also a lot you can do with diet and nutrition to minimize pain. Don’t wait until your illness is crippling you. Make dietary adjustments as soon as you can. You can slow the progress of many diseases just by changing what you eat.

Disease usually occurs and grows when the body is in a state of inflammation. You can change that by eating and anti-inflammatory diet. I'll go into some food issues tomorrow. For now, search for gluten free, Dr. Wahls', Dr. Fuhrman's, Dr.  Jelinek's and Dr. Swank's diets. 

Saturday, December 1, 2012

MS Facts and Your Support Team

I am going to aim this part of my discussion primarily at MSers. (I am working on something for other folks, too.)

The Winter 2012-13 edition of Momentum magazine was quite interesting. MSers with relapsing-remitting MS (RRMS) are always waiting for the other shoe to drop.We expect our MS to become secondary-progressive MS (SPMS) any day. But within the first 10 years of RRMS, only about 50% will become progressive. (pg.15) Maybe you knew that, but it’s better odds than I had hoped. When I was first diagnosed, my neurologist’s responses led me to think I had SPMS already. But then he put me on a disease modifying treatment (DMT), Copaxone, and through reading I discovered that that meant I still had RRMS. It matters to us because treatments work better on RRMS. Once MS becomes progressive, there are fewer treatments available. There are clinical trials going on for those with progressive forms of MS. Don’t hesitate to get into one. Oftentimes, a trial will allow participation from people all across the country. Ask your neurologist, or email or call the people running the trial.

If you’re just getting into finding out what kind of support there is for you, there are a lot of medical professionals to get on your team. (pg. 17-18) Get referrals to them from your primary care physician (PCP) when needed. Don’t hesitate to do so. If you can’t afford these folks, look for a hospital that is a non-profit, often associated with a religion or a university. On their website, choose the page about patient resources, and look for patient assistance. Or, try financial assistance. They often have programs that will let you see all the doctors in their group for free or at a significant discount. You’d be surprised how useful some of them can be. Here’s a short list to get you started:

·         Primary care physician (PCP)
o   Helps you to coordinate it all, gets you referrals, and can help fill out paperwork to get free or no cost treatment when you are underinsured, uninsured or just broke.

·         Neurologist (neuro)
o   Your neuro diagnoses the MS and prescribes DMTs and other drugs to help you manage it. She or he can also help you in many of the same ways as your PCP, depending on the individual doctor.
·         Physical therapist (PT)
o   Not only can she help you build strength and balance, but she can also show you how to make choices that minimize fatigue.

·         Occupational Therapist (OT)
o   Your OT can help you with upper body strength, and he can also show you how to use tools that help you act as independently as possible. Mine showed me some neat tools for getting my shoes on and off.
·         Medical psychologist
o   Dealing with MS means meeting new challenges, and coping with overwhelming emotions. I have been to one to talk about how angry I am with the medical system for not getting my diagnosis right for many years. The sooner you get the MS diagnosed, the more you can keep it in check.
·         Social worker
o   She can help you find resources you didn’t know you qualified for from Medicaid/Medicare to food, people who can help you at home, and more. Check with the Social Security Office and your county or city health department and county offices.
·         Speech-language pathologist
o   If MS makes it harder to talk or to swallow, then this is the person who can help you. Sometimes, the OT or PT will be the right one for this task. Ask!
·         Vocational counselor
o   Here, it’s a county function. There is an office for disabled folks where they help you to retool yourself and market yourself for work you can do.

·         Urologist
o   If you are having problems with your urinary tract, this doctor should be able to help you with a special PT, medications, or exercises.

·         Gastroenterologist        
o   If MS has affected your gut, a gastroenterologist can help with ideas or medications.
·         Anesthesiologist or Pain management specialist
o   A pain management specialist can be really important. Your PCP and neuro can help some with pain, but sometimes you need someone with more depth.
·         Ophthalmologist
o   For years, my eyes have had auras, twinges, and small stabbing pains. I put it all down to migraines or allergies. Turns out some of that could be optic neuritis or other vision problems caused by MS. Some folks have blurred or double vision, or get vertigo. A good ophthalmologist is important to have.

·         National Multiple Sclerosis Society (NMSS)
o   NMSS can often refer you to doctors who have done a good job for MSers in your area. They have a program called the MS Navigators who are people trained to answer many kinds of questions. Find your local chapter on the NMSS website and get a phone number for the MS Navigator. You can read about what is available here:
·         A Support Group
o   There’s nothing like a good support group. You can join several online and see what fits you well. The group I administer gives support as people go through life with their illnesses, but it also does a lot of research, trying to figure out how to help people lessen their pain and increase their function, and considering various treatments and how they work or don’t work, and whether the new ones coming up might have potential for us. Other groups might focus on emotions or diet or other areas.

o   The NMSS has support groups that meet in person, and if there isn’t one near you, they might train you to get one going in your neck of the wood. Think about it! If there are at least 300,00 MSers in the US, then there are at least about 60,000 in your state. Some of them have to live near you. (With something more widespread like fibromyalgia, there are over 6 million in the US! There will be someone near you!)

You are never alone!

Tuesday, October 30, 2012

My, Oh, My! Myelin!

A Brief Introduction to Myelin

Multiple sclerosis (MS) attacks the fatty protective coating of nerve fibers in the central nervous system called myelin. Even people without MS experience myelin decay as young as 39 years old. The first sign of myelin breaking down is a loss of speed of reflexes, for most people it’s not noticeable until they reach middle age or beyond. The next evidence of myelin breakdown is that balance can falter, shaking can begin, and coordination and memory begin to work more poorly.

Myelin plays a crucial role in the ability to function and remember information, and myelin is attacked in more diseases than just multiple sclerosis. For example, myelin is a key element of Guillan-Barre syndrome when a minor infection triggers the body attacking itself, causing muscle weakness and paralysis, and also in transverse myelitis, when an inflammation of the spinal cord damages myelin there. There are several organizations founded to fund myelin research, looking for a cure for demyelinating disease. The Myelin Repair Foundation encourages collaboration between scientists in separate labs. The goal of the group is to discover how to repair myelin, often through drugs that can result in quicker, more effective treatment of multiple sclerosis in order to end the suffering of the disease. The work may lead to therapies that will aid victims of other diseases including Alzheimer’s, Parkinson’s, and ALS. The Foundation hopes to launch clinical trials in 2014, and to provide a therapeutic approach to repairing myelin by 2019.

Another such organization is The Myelin Project. Founded in 1989, the organization funds research grants. In 2001, the Project funded the transplantation of myelin-forming cells into the brain of someone with multiple sclerosis. The procedure did not trigger myelin production or symptomatic change.

How do you help your body fight myelin decay? There are a lot of supplements that could help. One thing emphasized on some sites is that without sufficient vitamin C, your body can’t move nutrients to the brain. If you do decide to take a vitamin C supplement, make sure it is buffered, so it doesn’t make you more acidic. We’ll talk about more things that can aid in growing new myelin in the next blog instalment. 

Friday, October 19, 2012

Finding a Path to Sleep

Common to many with illness is the inability to fall asleep. Many would rather not add one more prescription to the medicines taken. I think we are fighting a lot but it still might help. Self hypnosis may be a way to relax and get some rest, and perhaps sleep. I am not a hypnotist or psychologist. Check in with yours for some good ideas. Meanwhile, here's one approach to it that I've used before.

First follow these two steps  to calm your mind. The first idea is to stimulate both sides of the brain and stop the brain from focusing on stress. To do so, try tossing a ball or bean bag gently back and forth from hand to hand for several minutes. As you do so, your stress should drop down. Toss a few minutes until your stress drops low.

For the second step, lie down comfortably in bed and do the following  visual exercise. Stare at a spot on the ceiling, focusing, then widen your gaze out in all directions while still staring. This gets you to focus outside yourself.||

Relax. Close your eyes and breathe gently, slowly deepening your breath as you relax. Slowly focus on your toes and let the muscles in them relax. Then, relax your feet, your ankles, and so on, from your feet to the top of your head. Now, visualize yourself floating on soft, gentle cloud, floating above a mountain. The cloud is comfortable. You are safe. You float down the mountain on the cloud, hearing the sound of birds. You hear the sound of a waterfall and follow the rippling stream bed as you float down the mountain. Your breathing is deep and slow, as you float on the cozy cloud. Slowly down the mountain and along the stream bed you float, listening to birds and flowing water until you come to the stream flowing into the sea. You drift off to sleep, cradled by the soft, fluffy cloud.

Wednesday, June 13, 2012

My Heroes

I admin a private support group on Facebook for folks coping with multiple sclerosis (MS) and other chronic diseases. (Private means you can’t find it with a search engine, so everything we say stays in the group and not seen by the public. You can only join by invitation of a member.) There are over 400 of us now. Most have MS along with a myriad of other diagnoses such as fibromyalgia, osteoarthritis, lymphedema, depression, migraines, and more. We have members with Crohn’s, Ehlers-Danloss, and cardiac problems. Some folks are caretakers of others with these diseases.

Every day, it’s a challenge finding ideas that can ease each other’s pain or keep each other’s households afloat, but we do it anyway, and we keep at it. We are living for a cure for each and every one of these ailments, and we are going to try to carry each other along into the future until the cures come for us all.

You would be amazed at the strength of our folks. So many are in constant pain while they raise their kids, care for their parents, or just keep up with life. They are all heroes. No matter how low a body is, there is always someone who offers a reason to cheer up, and who encourage us to press on in the fight.

We have few rules in our group. There’s the sanctity of the group – nothing gets copied out to other sites. There’s also a sense of civility. We are not rude. We do not belittle each other or compete to see who hurts more or knows best. Incredible! I am constantly humbled, and forever grateful. 

Monday, June 11, 2012

Growing Myelin – N-Acetyl Glucosamine

There are supplements that help our bodies fight the damage from multiple sclerosis (MS). The one I’d like to talk about now is n-acetyl glucosamine (NAG). N-acetyl glucosamine (NAG) is an enzyme and one of the 8 essential sugars, a monosaccharide. (It is sometimes called NAG but more properly, it’s GalNAc.) Bodies use NAG for repairs including cartilage, and the muscosal lining of the digestive system. It aids in insulin production and in absorbing cholesterol. It can help suppress pain, tumor growth and viruses.

In one experiment, in rats, those which took NAG saw remyelination. In other words, they got myelin coming back to cover the nerves that were bare of it due to MS. Humans and rats have a lot in common, and scientists think that NAG will cause remyelination in humans. The dose that’s recommended is 3500-4000 mg a day of NAG. Because NAG effects the gut, it’s important to build up slowly and find the amount that you can handle. NAG comes in 500 or 750 mg pills.

Table 1. What N-Acetyl-Glucosamine Does in the Human Body.
May cause remyelination.
Cuts inflammation, decreases pain, increases mobility; reduces swelling and stiffness esp. in knee and hip
Repairs damage
GI Tract
Repairs the mucosal lining; may help resistance to Crohns, and other bowel disease such as ulcerative colitis
Multiple sclerosis
Suppress damage of the autoimmune response; reduce or eliminate symptoms
Type I diabetes
Suppress damage of the autoimmune response; reduce or eliminate symptoms
Immune system
Boosts disease and illness fighting ability; limit spread of viruses within the body
Aids in ability to learn
Aids in secretion
Aids in absorption
Temporomandibular joint arthritis
As effective as ibuprofen in reducing pain
Aids in wound healing

Side effects you might experience include diarrhea, gas, heartburn, bloating and an upset stomach. Caution: if you are sensitive to shellfish or iodine, this supplement may bother you.

Note: I am not a doctor, just a researcher. What you read here is not meant to diagnose or treat any disease. It’s just my point of view on the information. 

Sunday, June 10, 2012

Vitamins and Supplements - Good Deals!

I take a lot of vitamins and supplements for several reasons. I am trying to work, and to counter the stupefying effect of meds like Baclofen. Nutrients give me the best chance of overcoming the drugs without adding negatives. I am trying to help my body remyelinate. That is, I am trying to counter the impact of multiple sclerosis (MS) on my nerves. It slows the rate at which my body builds new myelin to keep my nerves covered and useful. Taking things like N-acetyl glucosamine (NAG) provides a way for my body to speed back up the process. I am trying to fight the impact of MS overall, by taking D3, B12 and others, and I am trying to be stronger and healthier. The prices for these supplements are pretty steep. I get the best prices for almost all of them on Amazon. They are often 40% off list price. Once a year, I pay $75 to be a member of Amazon Prime, and the rest of the year, I pay nothing for two-day air shipping from Amazon. It saves me a lot of money. There’s a link for the NAG I get from Amazon on this page.

Some things I get elsewhere. My B12 shots cost only a dollar apiece when I get them through Trim Nutrition. I’ve been getting my injections from them since early 2011, and have had no problems at all. The link for Trim Nutrition is on this page, too. 

How are you getting your vitamins and supplements?