Summers make one of the best seasons of the year that deserve to be enjoyed. When it is time to rejuvenate the energy lost after working for the rest of the seasons, you should do so with a manicure that matches your moods. Your summer plans might be on hold, but soon, you will be busking in the undulation of the long-awaited warm days. Summers are a time to try bold and bright manicures. Maybe you prefer opening the season with a neutral manicure or just jumping into it with neon yellow. Do not worry because there is a hoard of dip nail polish colours that have been introduced with the brands like Kiara Sky dip powder colors, OPI nails….
Currently, pastels, flower-inspired shades and earth tones are taking over the summer, but there is a lot more that you should try out.
We have been operating in our neighbourhoods and homes for so long, and it is time to let go. The naturally and locally blooming colours might be the pearl of our eyes this season. If red makes you feel glamorous, then you should go for the Deborah Lippmann polish. Its poppy red colour gives you the look and feel of a freshly plucked flower from a floral garden. Remember the oxblood manicure that looked perfect over the winter? Deborah Lippmann is its summer version. (more…)
Although self-tanning is considered to be safe and harmless, the real question arises if it is the best alternative for women who are pregnant. Studies have shown prolonged exposure to UV rays can be detrimental for babies’ growth and development, and staying out in the sun for long hours is not a viable option. Tanning beds also involve a lot of risk factors associated with spinal malformations in babies.
Healthcare experts often advise against the use of tanning beds or saunas as it increases the body temperature, which could also lead to harmful effects both on the mother and the baby. Here’s why it would be a smart decision to opt for self-tanning rather than wasting money on tanning beds or conventionally tan in the sun.
One of the easiest ways to achieve the sun-kissed skin, which would spur your self-esteem without causing any damage or an unfavorable effect on the body, is self-tanning. The risk factors are incredibly low, and most importantly, it’s FDA approved, which makes this a holy grail product for all pregnant women. The critical component present in every self-tanning product is a chemical called dihydroxyacetone, commonly known as DHA.
The chemical has been tested over decades now and has shown no adverse effects, even on women with sensitive skin. DHA produces a brown pigment called melanoidin, which oxidize the cells on the outer surface of the epidermis without getting absorbed in the body. This tanning agent leaves the skin with a radiant and bronzy looking tan.
Even though it’s a gradual process and the tan gets darker over time, the results are pretty noticeable, especially after the first or second wash. While picking a tanning lotion is essential to be vigilant towards the formula, especially if you are with a child.
Make sure to do a patch test on a small area first as sometimes there is a risk of an allergic reaction due to the changes in hormone level that can make the skin more sensitive than usual. Nowadays, almost all tanners are branded as pregnancy-safe self-tanners, it is highly recommended to check in with your doctor first as a precautionary measure. (more…)
When it comes to fashion, things don’t go out of trend, they just take a hiatus and comes back bigger the next time. Same thing goes with nail art, they take a break then come back better and bolder. Nail art design comes in loads of variations and everyone is going crazy about them. From a school girl to a working woman, everyone wants to add class and styles in their nails. And when it comes to getting arty with the nails, women will rock anything and everything just to feel good. Let’s take a look at a few nail ideas that’s making a huge comeback on the scene of nail fashion.
Hologram first made news when Nokia phones were introduced and this color-changing shimmer mani is a must if you want to stand out. This totally gorge holographic treatment only needs good lighting to bring out their details.
For beginners, sticker nail art is their holy grail. Just use tweezers to gently pull out the design from the paper and stick it over the base paint and you’ll have a fantastic nail art that looks like a million bucks. (more…)
Hearing and seeing about dip powder nails on social media might be something that you have grown accustomed to. It is the newest and most innovative that requires no curing whatsoever and you and you still get that amazing shine or sassy matte look that you want. Nail dipping system is becoming famous because of its longevity and versatility. Since everyone is wishing for a nail polish that will last them two weeks or more, dip powder is the answer to that. Although the dip powder application requires a few more steps than a traditional gel or acrylic manicure, it can be done in the same amount of time in a salon or, for your convenience, it can be done in the comfort of your home.
A famous manicurist stated that Nail dip powders are basically acrylic powder used in a different technique, however, it shouldn’t smell like the standard acrylic. Unlike gel, which requires UV rays to cement the polish, or acrylic, dipped manicures use pigmented powder. SNS Nail dipping powder is popular because it is odor-free and both the powder itself and the adhesive-like glazes used during the application process.
A nail polish is a fashion accessory most fashionistas use to complete their dressing ensemble. But whether fashionista or not, a lot of women find it fulfilling to have their nails done. Nowadays, most people no longer wear a nail polish to complete their dressing or have their nails look well, but to make a fashion statement, as people can be seen wearing different colours or having glittering pieces in their nail polish. And as long as fashion exists, the nail salon business will always be needed.
When you think about starting your business, the first thing you would want is for the business to prosper and give you more money in return. One way to do that is finding the right supplier for your business needs and one of this is buying in wholesale nail supplies. Buying in bulk or wholesale purchasing is considered to be one of the most cost-effective methods to fill up those merchandising shelf pulls and gain profit.
Buying your nail polish in bulk is the most cost-effective way in filling your nail salon’s shelves as well as saves you money and time. The primary advantage of buying wholesale nail polish and other manicure items is the savings one can get for purchasing in bulk. As a whole, buying items in bulk is the best way to save money, as well as purchasing the items when in bulk could result in the largest discounts.
How can we ever predict the future? How would we ever know what will happen tomorrow, and whether that something will be positive or negative?
The interesting thing about labeling things “good,” or “bad,” is that these are our own interpretations of events. There is no way to determine what the outcome of our experiences might be. Our only option is to truly wait and see, living only in the moment, and not a second after.
As a child, I was convinced that I was destined to become a famous Broadway actress. I loved to act, sing and dance, performing in numerous community theatre productions. I had big dreams, and no one was going to steer me away from them. Being on a stage made me feel a way I had never felt before, and I recall looking out into those glaring stage lights that hid the audience from view, belting out songs I would have been far too shy to sing to my own family in a small room.
Life has a tendency to steer us in directions we may not have imagined. The best written plans typically fall away, evolving into forgotten memories, as we march along our paths.
Recently, during a chat with my mom, she made a very interesting comment on my life. “All those years of wanting to achieve something great, and of all things, MS is what made that happen.” I took a moment and really let that statement sink in, and I slowly realized that my greatest impact on the world might indeed be a result of multiple sclerosis. Who would have ever imagined that on my day of diagnosis? The day that life felt as though it had come to an end, that there was no hope, and all was lost. At that moment, my diagnosis was definitely the lowest point in my life, the biggest “bad” event I had ever experienced.
Looking back, however; it has led me to incredible places, and allowed me to connect with some of the most inspiring, caring people throughout the world. It has allowed me to pursue my old passion of writing, allowed me to slow my professional medical career and spend more time with my children and husband. It has given me strength and perseverance, tested my resolve, and shown me that I am not a weak minded person. It has challenged me physically, but strengthened me psychologically. I no longer question whether I am loved, or whether those who truly care about me will stick by my side in tough times.
I received a beautiful comment on my previous blog, from a reader in Australia just before writing this. She told me that she is a mother who was recently diagnosed, and that my writing has helped her cope with her illness. Being able to reach out across continents virtually, and make even the slightest difference in the life of another mother with MS is such a gift. How can I possibly feel cheated? How can I possibly label this diagnosis entirely “bad?”
The lesson for me is, don’t assume that everything that initially appears negative actually is. Life has an amazing way of teaching endless lessons, and though we may not always be in the mood to learn them at the moment, we may eventually look back and think:
“Now I understand.”
Parents with MS: Please tell me I am not insane.
During my last relapse, I experienced a very sudden and dramatic loss of vision in one eye, and I immediately went to the ER (my former workplace and my husband’s current workplace.) I am very comfortable there after ten years as a nurse, and the staff are basically a second family to me. I am very fortunate to have them, and they always treat me like a queen when I have to visit.
They provide me with warm blankets, food, and the much needed care I require. My last relapse happened on a Friday, and the outpatient infusion center is closed on weekends. Normally, I receive my 3-day steroid infusions there, and stay at home rather than the hospital. This time, however, the weekend would prevent that. My Neurologist recommended admitting me to the hospital during the 3-day course of IV steroids. Most people would see this as a bad thing. Parents with MS- not so much. My mind immediately thought of what an amazing break this might be for me!
Three days of rest? Peace and quiet? Meals brought to me while I lounge in bed? Every need met for me, while I relaxed and recovered? That sounds like heaven.
Parents with MS don’t get any of those things at home. Children are demanding, regardless of my physical condition. They don’t understand when my energy is low, and I am not myself due to a relapse. They still have needs, and my husband still has shifts to work, despite my illness. I knew in my heart I wouldn’t get the much-needed rest I required at home, and I started to say “sounds great,” when offered a hospital stay. Before I could get the words out, my husband and nursing friends began making special arrangements for me to receive my infusions in the ER, going home in-between, convinced that I would never want to stay in the hospital for 3 days. Who would? My heart sank. But, I felt too strange saying, “No! Let me stay in the hospital!”
At that point, I realized that I had really lost it.
I had fully transitioned from the competent healthcare provider to the exhausted, debilitated patient I had cared for so many times before. I was officially in need of the nurturing I had given for so many years. It would be one thing if I had a quiet, relaxing, peaceful home to return to to heal…but that was not the case for me. I had many little ones depending on me there, and this offered to time to recover and heal.
This is the predicament many parents with MS find themselves in. I am not alone in this experience, I am sure. We simply don’t get the chance to heal and rest the way others might, and at this point I was feeling quite sorry for myself. As I returned home, I feared the worst. I feared that I would be overwhelmed with responsibilities and obligations, neglecting my own body and needs as always.
The lesson I learned at that moment was that I needed to be my own advocate. I needed to express my needs to my loved ones, to communicate what I was feeling more than ever. At times like this, I need to clearly state what I was and was not capable of doing, and give my family a chance to provide for me. The moment I spoke up and stopped pretending to be the “hero,” the help was all around me. I had a neighbor offer to cook meals and watch my children. I had my mother who was immediately in my home, cleaning and picking up groceries. I had friends who offered to bring coffees, and a husband who spent his days off taking care of me. I was overwhelmed by the love and support I felt at that moment. I realized that I had made a mistake in the past, keeping my feelings locked inside and refusing to admit that I needed help. I needed to be honest, and I never needed to feel alone. I now know how fortunate I am to have so many in my life who care about me, and even the kids were happy to pick up a share of chores. The lesson is, don’t ever feel guilty asking for help like I did. Don’t keep your feelings inside, feeling frustrated and alone. Speak up, reach out, and ask for help. You may be pleasantly surprised at the love that surrounds you.
I recently had the opportunity to interview Marie, an RRMS patient from Australia who opted to try Lemtrada after doing a great deal of research about her options. She is open and candid about her experience, and I am so grateful to her for sharing this information in such detail. Here is our interview. Thank you, Marie!
1. What made you choose Lemtrada?
After being diagnosed in March 2014 and overcoming the initial shock and grief, I commenced interferon beta 1a (Rebif). I researched my options extensively. All evidence was suggesting that a more aggressive treatment approach was best undertaken early in the disease course. I needed to have an effective treatment within what I saw as my window of opportunity, even if that meant taking on risks while I felt otherwise well. I was fully aware that the measures of disease activity currently used only look at the tip of the iceberg. There was no guarantee that I wasn’t acquiring subclinical damage not measurable by current standards and that my reserve capacity wasn’t being slowly destroyed behind the scenes.
HSCT (Hematopoetic Stem Cell Transplant) — intensive chemotherapy followed by the infusion of the patient’s own stem cells – is only in trial phase in Australia and I didn’t meet the strict eligibility criteria. I could have elected to travel to receive this treatment overseas, but after two years of relative disease stability, I looked at other options that might be more appropriate for my disease status.
Lemtrada (Alemtuzumab) is an induction treatment that was listed on the pharmaceutical benefits scheme in Australia in April 2015. This means that the aim of the treatment is to produce an effect without ongoing lifelong maintenance. Whilst this was appealing to me, it was not the main factor in my decision. I wanted an effective treatment that offered the chance of long term remission. I also wanted to minimise brain atrophy, a factor not routinely measured but that is associated with long term disability outcomes. I considered the risks and felt that these were mitigated with close monitoring to allow timely and successful intervention if necessary.
I’d surrounded myself with a wonderful professional support team. My neurologist was initially apprehensive in prescribing such a treatment for me, but after careful consideration and after an MRI showed a new lesion in early 2016, he felt that this was a considered and reasonable treatment choice. I’d also consulted a haematologist when looking into HSCT and Lemtrada. Since both treatments have been used to treat haematological conditions for a long time, he provided valuable insight into the history and application of the treatments and was a key factor in my decision. The MS Society in my state has two wonderful and knowledgable nurses. I had a specific MS Infusion Nurse assigned to my treatment. My local General Practitioner was supportive and genuinely interested in my treatment.
2. What was the experience of the infusion like for you?
I received the treatment as an outpatient, where I attended the hospital day infusion ward for five days. I received IV methylprednisolone each day before the Lemtrada infusion. I was required to stay in the department for a two hour observation after the Lemtrada had finished each day. I felt confident in the abilities and experience of the doctors and nurses on the day infusion ward. I spent much of my time reading, watching a TV series and talking to my wonderful mother, best friend and brother and sister who all came to visit.
3. Was there anything unpleasant about the treatment?
I was fortunate in that I didn’t experience the common infusion related side effects such as a rash, nausea or headache. I did however experience tachycardia, chest tightness and heart palpitations.
This was very disconcerting for both myself and my doctors. Testing ruled out any serious heart or lung abnormalities and it was thought likely that these symptoms were a direct but temporary reaction to the histamines released in response to the Lemtrada. Under close observation I completed the treatment course with no real issues.
4. How are you feeling now, after the treatment?
Right now I’m only two weeks post treatment. As the effect of the steroids wore off in the days immediately after, I felt very lethargic. But over the next week I regained this energy and I actually feel back to baseline. Fortunately I didn’t go into the treatment with any significant disability, so I’m not looking for major symptom reversal. Stopping further progression of the disease is my primary goal.
Of course my immune system will remain suppressed for a while and I will need to be vigilant avoiding illness as best I can. This can be difficult with two young children, but I need to do my best to allow my body and immune system to recover.
5. What does the treatment plan consist of?
In March next year (12 months after my initial course) I’ll have three more infusions over consecutive days again. Then if all goes as hoped, I won’t require any further treatment and my ms will remain in remission! But if I do ever show new MRI or clinical activity, I can have subsequent infusions.
Importantly, I must have a monthly blood and urine test for the next five years (or four years after the last treatment course). This is essential to detect any secondary autoimmune diseases so that they can be treated early. The most common being thyroid disease (30%), ITP (2%) and Good Pastures (0.3%). The latter two are considered more serious, but are fortunately treatable if detected early.
So while I’ve had the treatment, it’s important I remain vigilant with ongoing monitoring.
6. If there’s anything else you can think of, or want to add, please feel free!
Some individuals liken treatments such as Lemtrada, which involve rapid and intensive suppression of the immune system, to ‘using a sledgehammer to crack a nut’. They feel it produces unacceptable amounts of collateral damage. But how can a more specific approach be developed when we don’t know the actual cause of the disease? What we do know is that ms is likely an autoimmune disease which involves the immune system mistakingly attacking myelin. Almost all licensed treatments (excluding Glatiramer Acetate) work by manipulating or suppressing the immune system. Lemtrada utilises this principle, albeit to a stronger degree.
MS is renowned for being unpredictable and unique to each individual. Consequently, what treatment option is suitable for one person may not be for another. Many elect to forgo all treatment and deal with consequences as they arise. Others prefer a more conservative approach using treatments that have a longer term safety profile. Then there are individuals like myself who are prepared to take on greater risk, but with potential greater reward.
Such a wide spectrum of disease severity also produces a huge variation in opinions in terms of treatment approaches even amongst neurologists. But since no one could tell me my prognosis, I felt it only fair that I have a say in what treatment I undertake. My neurologist guided and helped educate me on my options and ensured that I was fully aware of all risks associated with treatment.
I strongly believe that we are our own best advocate. No one is as invested in our own health as much as we are. Knowledge is power. Do as much research as you can and if you can’t, surround yourself with people who care as much about your health and your treatment as you do.
After a lengthy hiatus due to multiple relapses, I believe I found my voice again.
These past few months have brought challenges, physical and psychological. After more than 6 years with MS, I was convinced I had mastered the nature of my illness. I believed I could somehow predict what the monster would do next, its routines and habits. It was my own resident monster, after all.
I believed I had a firm grasp on it, that my medications were keeping things fairly stable and balanced. I was convinced that this would be the course of my illness, with long periods of relative normalcy in between relapses. The past 6 months have taught me otherwise.
I was met head-on by a speeding train, with multiple relapses, back-to-back. I was hit in the places I always counted on: My cognition, my reasoning, my intellect. I found myself struggling to put two words together, let alone blog and author books as I had in the previous year. My memory was horrendous, and I found myself misplacing objects, forgetting dates and appointments and becoming incredibly disorganized.
I felt utterly and completely out of control.
I began to play the role of the “sick person,” which I despised. I threw myself completely into my new role, shuffling around the house with slippers and sweatpants; deciding not to even attempt to do my hair or put on make-up. Taking a shower was completely exhausting, and just the thought of it was too much at times. My husband launched himself into his new role of caregiver. He shouldered more responsibilities, took the kids away from the house so I could rest. He became an incredible support, but I felt guilty watching him take this on.
I have slowly returned to the living world, regaining small amounts of energy and cognitive power. I just recently realized that I had grown tired of my role, that I no longer wanted to play it. I wanted to return to my former self, and I had to make a conscious effort to do so. It would not happen without effort, and I was determined. These roles we play…..they are only in our minds. We may have physical and cognitive challenges with MS, but we do not need to be held prisoner by them. We always have the option to change our thought processes, to refuse to sink into the deep hole that is the “sick person” role. We are each so much more than our illness, and the goal is to always remember this. Remember who you were when you were well, before your diagnosis….and keep that person alive.
I looked in the mirror today, and I was shocked that I didn’t look like the elderly, sick, hopeless person I felt I was. I still looked like me.
I recently had the opportunity to interview the man I consider to be the “ultimate MS blogger,” Marc Stecker, otherwise known as the “Wheelchair Kamikaze!” Marc has been blogging since 2008, and has created an incredible collection of articles on just about every MS related topic, always with a touch of his trademark humor. Marc also includes video diaries of his travels via wheelchair (at top speed!) around New York City, where he lives with his wife, Karen.
I’m Marc, a 50-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker “Wheelchair Kamikaze”. I’ve managed to rig a camera to my chair, so I’m able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here. Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire… Prior to my enlistment in the Evil Empire, I worked as a video producer and editor. I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock ‘n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
Q: What have you learned about yourself since being diagnosed with MS that you may not have known before?
A: Well, I’ve learned some things about myself that have definitely been positives, and a few that I could have lived without ever knowing. Among the latter is that I have a high tolerance for pain (yippee!), and I seem to have a knack for understanding medical research papers, which often times seem like they are written in code. And, in fact, they really are, I think in order to keep the “sacred knowledge” in the hands of the privileged few (physicians and other researchers). Although there are, of course, exceptions, lots of the medical research out there isn’t really all that complicated, it’s just written using acronyms and million dollar words to make it appear almost indecipherable.
Among the more positive things I’ve learned about myself since I was diagnosed is that I’m much more resilient than I ever thought I could be, and that I have an inner scientist that had been asleep ever since I put away my chemistry set for the last time when I was about 14 years old. As my disease has progressed and forcibly stripped away many of the bells and whistles of life, in which it’s so easy to get lost, I’ve come to rediscover parts of myself that had been long hidden behind by the veneer of career, romance, social status, etc.
Though our culture tries awfully hard to convince us otherwise, I’ve learned that the true worth of a person can’t be judged by the title they hold at work, the car they drive, the clothes they wear, the grandeur of the place in which they live, or the physical attractiveness of the person on their arm, but rather by their inner essence, the core components of their personality that includes their basic values, moral compass, and general belief system. This disease gives you plenty of time to be introspective, and by peering within I’ve identified the parts of myself that I don’t like, and other parts of which I’m quite fond. Hopefully, I’ve been able to do a good bit of purging of the bad stuff, and I’ve tried to do my best to accentuate the positives.
I’ve always hated dishonesty, but now I have a seething disdain for it, especially dishonesty to self. Along those same lines, I’ve rediscovered the value of kindness, and especially kindness to self. In many ways, that’s the hardest type of kindness to practice. Not that you should on a wholesale basis absolve yourself of all of your sins, but you should try to clearly recognize and then endeavor to never repeat them. Part of this process is learning not to beat yourself up over your foibles, which can be very hard for those of us who are extremely self-critical. Thing is, the disease will do a good enough job of beating you up all on its own…
Q: Who are your heroes? Who inspires you the most?
A: Even when I was a kid, I had very few heroes. Not really sure why, I guess it’s just very early on I realized that there’s a jerk lurking somewhere beneath the surface of everyone, and that heroes only exist in the pages of comic books. That said, these days, if forced to name one person, I’d have to go with Robert Kennedy, JFK’s brother who was assassinated in 1968. He was a fascinating human being, who went from working on Sen. Joe McCarthy’s communist witch hunt to championing the poor and downtrodden, and who, after struggling mightily with his brother’s murder, committed himself to seeking justice for all members of society. His brother, Ted Kennedy, said this about him when delivering the eulogy at RFK’s funeral:
“My brother need not be idealized, or enlarged in death beyond what he was in life, to be remembered simply as a good and decent man, who saw wrong and tried to right it, saw suffering and tried to heal it, saw war and tried to stop it.”
To be remembered as a good and decent person, I think that may be the grandest aspiration of all. I admire Robert Kennedy’s intellect and depth of soul, which I think were best displayed during an improvised speech he gave to a potentially hostile crowd on the night that Martin Luther King was assassinated. The speech was made almost entirely off-the-cuff, and displays a basic sense of humanity, fed at least in part by the pain he felt that the loss of his own brother, Pres. John F. Kennedy, that makes RFK’s assassination one of the greatest tragedies this nation has endured. Had he been elected president 1968 one can only imagine how different these past 40+ years would have played out. In case anybody wants to see/listen to RFK’s speech, here’s a link to it on YouTube:
Q: What motivates you on your “bad days,” and gives you the strength to carry on?
A: Sometimes nothing motivates me on bad days, and I accept that it’s okay to listen to my body and do as close to nothing as possible if that’s the way I’m feeling. I think it’s very important for MS patients to realize this; discretion is the better part of valor, and some days it’s okay to just allow yourself to be a person with a horrible disease who just flat-out doesn’t feel good. Even on those days, though, it’s important to do nothing to the best of your ability, if that makes any sense. If you’re going to stay in bed and watch SpongeBob SquarePants all day, that’s fine, but try to enjoy the heck out of watching SpongeBob SquarePants all day while you do it, rather than just succumbing to the fear and misery that can become part of life with multiple sclerosis, using SpongeBob as a backdrop while you wallow in the muck. It’s okay to wallow every now and then, also, but don’t get stuck in the muck, whatever you do.
On most days, though, what motivates me is the knowledge that this day is the only “this day” that I’m ever going to have, this minute is the only “this minute” that I’m ever going to have, and this second is the only “this second” that I’m ever going to experience. Time is everybody’s most precious possession, and it gets more precious with each passing moment. Unfortunately, you don’t get any rebates or refunds for time you spend miserable; there’s no cosmic scorekeeper keeping track of the brownie points you might think your earning while wrapped in self-righteous unhappiness. I think back on all the time I wasted when I was healthy, tied up in knots about things that ultimately turned out to be completely insignificant– and, boy, I went out of my way to find things to be miserable about – and realize just what a fool I was.
Not saying that you can somehow just sit around grinning like a blithering idiot and smile away your problems, but we do shape our own realities through the filter of our minds, and we can control our emotions, not the other way around. Pop culture often leads us to believe that it’s our emotions that rule the day. In reality, nothing could be further from the truth, as your emotions are born of you, not you of them…
Q: Do you have any opinions about those seeking untested treatments, such as stem cell transplant, in foreign countries, especially given the recent fraudulent stem cell scam? Do you see stem cell therapy as a potential future therapy for MS?
A: Well, many MS patients, especially those with progressive MS, are caught between a rock and a hard place. There are currently no drugs that have been shown to effectively treat progressive MS, and at the very least these untested treatments offer hope, which is a very powerful thing. At the same time, one must constantly be on guard against letting hope eclipse reason, and if something sounds too good to be true, it almost always is.
Rest assured, there are plenty of unscrupulous bastards out there more than willing to make a buck by taking advantage of the desperation of sick people, so beware. I’m very well acquainted with that desperation, and my advice would be that before forking over tens of thousands of dollars to any individual or organization, make sure to do your research. Extraordinary claims demand extraordinary evidence, and the testimony of a relatively few people on the Internet does not equate to extraordinary evidence. Those same unscrupulous bastards are not above paying or otherwise compensating patients to make if not fraudulent then inflated claims about the efficacy of the treatment being marketed, not because those patients are being consciously dishonest, but because they want to curry favor with the people they think may hold the keys to their salvation.
Any honest-to-goodness, legitimate researcher will have a very easy to find paper trail of academic achievements and research studies with their names attached to them. A quick Google search should reveal just how legitimate is any individual making claims about medical research and innovative treatments. Look for scholarly papers published in legitimate scientific journals. If they don’t exist, giant red flags should start waving.
I do think that stem cells offer gargantuan potential for treating not only MS but a wide range of diseases. Right now, HSCT, the type of stem cell treatment that uses chemotherapy drugs to eradicate a patient’s immune system and then reboots it using stem cells is, on the strength of very strong research results, gaining credibility even amongst the most skeptical neurologists. Unfortunately, this type of treatment appears to have limited usefulness when applied to patients with progressive disease.
The regenerative stem cell therapies, the kind that seek to repair the damage done by MS to the nervous system, are really still in the experimental stages. Lots of potential there, but also still many, many questions to be asked and lessons to be learned. There are many extravagant claims being made about this kind of therapy by quite a few offshore clinics. All I can say is, be very, very careful. A healthy dose of skepticism can be a very valuable thing. Remember, if even half of what many of these places and the people who run them claim was true, their names would be plastered all over the mainstream news services and the individuals themselves would be buying plane tickets to pick up their Nobel prizes in Sweden. I wish with all of my heart that the answers were indeed out there, unfortunately, as far as I can tell, we’re not there yet.
Q: How have writing and blogging changed your daily life? Do you find writing therapeutic?
A: Writing the blog is definitely therapeutic, much more so than any of the MS therapies I’ve tried. I honestly never thought that more than a few dozen people, mostly friends and family, would ever read Wheelchair Kamikaze, and its success continues to astound me. Going back to one of your previous questions, researching items for the blog and answering email from readers is one of those things that motivates me on bad days. So, yeah, the blog has definitely impacted my daily life, in so many positive ways.
When I left work to go on disability, I wondered how I would fill my days. In all honesty, occupying my time turned out to not be that much of a problem; despite being relatively successful I never really liked working, and the freedom of no longer having to work was kind of exhilarating. I know this isn’t the case for many people, but who I was and what I did for a living very rarely meshed as I built my career. The success of Wheelchair Kamikaze really makes me wish I had devoted more time to writing when I was younger, which may have led me to a more fulfilling career. Better late than never, though, as they say. I just wish that I had something a lot more pleasant to blog about, and that there weren’t so many people who identify with my subject matter.
Q: Any advice you would have for those who are transitioning to using a wheelchair?
A: My best advice would be to just go for it. It took me way, way too long to finally get over myself and admit that I needed a wheelchair. By the time I did so, I was practically housebound, and the disease had definitely gotten the upper hand as far as my having any kind of independent social life was concerned. Believe me, there’s a big difference between Armchair Kamikaze and Wheelchair Kamikaze. In the months immediately preceding my getting the mechanical monster, my ability to leave the apartment on my own had dwindled to almost nil. The day I got my wheelchair the world was once again open for business, so to speak, and suddenly I was able to fill my days with adventurous urban excursions around New York City.
I vividly remember the day my chair was delivered. After the wheelchair tech left, I sat across from the chair giving it the stink eye, having a hard time accepting the fact that this thing was now basically a part of my broken body. Then the 12-year-old boy that lies just below the surface took note of the fact that the thing has wheels, motors, and the joystick. I dragged myself over to the chair and sat down, and was soon whizzing around my living room, recklessly smashing into and upending coffee tables, sofas, and chairs.
That evening when my wife came home she insisted we go out for a “walk”, a notion that had me horrified. Me, in public, in a wheelchair?!? Good heavens, no! With a bit of cajoling, my wife soon won out, and we were out on the streets of Manhattan, me with my backside firmly planted in a rolling electrical beast. I was certain that the attention of every pedestrian in the city would be riveted upon me, but instead nobody seemed to notice. Truth of the matter is, most people are so self-absorbed that they barely give any attention to anything outside of their own heads, and they could care less that some guy in a wheelchair is sharing the sidewalk. Gotta say, the moment I realized this was one of the few times I’ve ever been grateful that narcissism plays such a large role in human psychology.
Q: What was it like to be interviewed by Sanjay Gupta on CNN??
A: Sanjay was a really nice guy, but the total time I spent with him was probably about 20 minutes. The interview wasn’t for CNN, but for a website called everydayhealth.com, with which Dr. Gupta is associated. We actually shot the interview on two different days, which were separated by about eight months. On the first day we shot the part with Dr. Gupta interviewing me while we walked/rolled down a sidewalk in downtown Manhattan. The plan was that the journalist who was putting the piece together would interview me and my wife Karen a few weeks later, to finish the video. As it turns out I wound up having some health problems soon after shooting the Sanjay Gupta part, and then winter hit, and we really wanted to shoot the rest of the video outdoors. So we waited until spring (the part with Dr. Gupta was shot in late August), and finished up the video at Lincoln Center, which is quite a ways – several miles – from where Dr. Gupta and I took our little stroll. Just shows you how much editing plays a part in creating “movie magic”. Also shows you why you shouldn’t believe anything you see on a “reality” TV show. It’s all completely contrived…
Q: Do you realize that you have provided hope, inspiration, and healing to so many MS patients through your willingness to openly share your experience? Do you know, that through your brilliant and creative posts, you have truly changed the lives of MS patients around the world? (I mean it!) ☺
A: Okay, now I’m blushing. If even 1/1000 of what you say is true, I’m a very grateful man…