I’d like to share this news recently reported from Tel Aviv University about stem cell research aimed at finding a cure for MS. The Israelis have been very successful in stem cell research in other fields, particularly Cardiology, finding a way to differentiate stem cells taken from a patient and using them to stimulate the patient’s heart muscle to repair it’s own heart damage after heart attack. With that kind of success and the progress reported here regarding MS, progress in repairing myelin sheath seems very possible and maybe soon.
This news report came into my inbox today and I thought many of you would be interested. MS often strikes women before they have had children or before they’ve had all the children they want, so this report holds some good news for those women. Nice to have good news once in a while!
Recently, I drove around the neighborhood running errands. I went to the dry cleaner, picked up prescriptions at the pharmacy, did some shopping at the bookstore, and picked up weekend supplies at the grocery store. At every stop, there were people who smiled and interacted with me in pleasant ways, with whom I had small conversations that made my afternoon very nice. On the way home, I found myself smiling with an overwhelming feeling of gladness. I realized that I had done all these things in one afternoon and was on my way home with enough energy, both emotional and physical, to unload the car.
Part of this is a positive effect of the low-dose Naltrexone I started 2 months ago, part of it is that the weather is getting cooler and my fatigue isn’t constantly triggered by heat anymore, and part of it is good planning and energy conservation on my part. But the biggest part was just enjoying good moments on a good day. I am generally a pretty positive person, but this day was nicer than most and for no real concrete reason, it was just because I took a moment to smell the roses, to appreciate the little moments that came my way that day.
Since I posted the blog last Monday, “Don’t Look Back,” I have talked with many people about the concept of not looking back regretfully with regard to life with MS. Overwhelmingly, the topic that comes up next in these conversations is that not only is it best not to dwell on what used to be but that in your decisive movement forward it is important and beneficial to go slowly enough to notice the moments in your life that are really good. There are always times in life when it feels good to be where you are, when you can appreciate a smile from someone, or an important accomplishment, or just that moment when you feel that you are really in this spot for a reason. I don’t believe anyone’s life is without those moments, but sometimes it’s hard to see them when there are so many worries and fears crowding your mind. When you can recognize and savor those moments, your life is enriched in very positive ways and in fact, those around you benefit, too.
I just wanted to share that with you…that the other day I suddenly noticed the scent of roses wafting my way in the car, on the way home from the grocery store, on just an average day.
They sure smelled good.
There’s a lot of history to the idea that one should move forward with one’s life and not look back, with either longing or regret. There’s that old saying “you can never go home again” meaning you can’t ever go back to the way it was. People say of their lives, “I have no regrets” as if it’s a big accomplishment, and it is, to be happy with the life you’ve lived that brought you to where you are today. There’s the biblical story of Lot and his wife, banished from their hometown and told never to look back, and not to regret leaving because it was a bad place to be. Lot’s wife, however, could not quite forget the home it had been to them; she had to look back and she turned to a pillar of salt, just as she had been warned.
Last weekend was one of those weekends when the past came to haunt me in spades. There were so many memories of people and activities and work and past expectations that came to remind me that my options are very different now, for as many reasons as there were memories.
It started with the weather on Saturday. In years past, on a day like that, with weather perfectly clear, breeze light and crisp, sun beginning that descent in the sky that gives the light a clarity that it only has in the fall and winter, I would not have hesitated to hop in the car with a tripod and a few cameras and to head off for a photo shoot somewhere in the near vicinity. I used to take little day jaunts several times every fall and winter, whenever a weekend arrived with weather like that. It’s when the air is clearest and hence the light is the best. My favorite, most popular and most famous shots were taken on those weekend day trips. I’ve built whole series and whole exhibits on some of those weekend shoots. You wouldn’t believe how blue the sky will photograph on days like that, and the textures in black and white: phenomenal.
But I can’t do that anymore. I can manage a shoot standing in an area of about 10 feet in diameter, for an hour, with a chair close by. Driving isn’t a problem, it’s the getting all the equipment in and out of the car, setting up, all the walking and moving around, taking equipment down and packing it back in the car that’s the problem. Besides that, I have neither the energy nor the strength to put together an exhibit anymore, nor the money with which to do it because I am not able to work much now.
Later on Saturday, as I was having lunch and thinking about what I’d do instead of photography on such a perfect day, I got a message on Facebook from a friend in Sri Lanka. I met her husband while setting up one of my exhibits years ago and I instantly became friends with them both. We were part of a gang of friends at the time who were all involved in architecture and photography and we frequently got together over art and business and food and fun. My friends moved back to Sri Lanka a few years ago and it wasn’t long before the whole gang sort of dissolved; people moved back to their homelands, others got married and had babies, and some got new jobs taking them in different directions, just the usual stuff that happens in life. I looked at some photos on her and her husband’s Facebook pages and saw how great they look and how beautiful their surroundings are. I miss them and the times we had back then, I miss the social scene we had created, I miss all the people, and I miss the events we participated in. I am sorry those times are over and that most of those people are gone now but very glad to have had those times.
Talking to my Sri Lankan friend also reminded me of all the traveling I’ve done. The scenes in photos where I see them in Sri Lanka remind me a lot of the time I spent in Asia many years ago when my parents lived in Malaysia. The architecture and landscape and even how they have described their home reminds me of Hong Kong, Kuala Lumpur, Bangkok and Singapore. I’ve been to a lot of other places around the world, too, but nothing really compares to the wonder and adventure of Asia, where things and people are so different from home. I always thought that by this point in my life I would be ready to travel more, not less, but things don’t always turn out as planned.
With changing circumstances, though, come changing opportunities. Writing and blogging and interacting with others who have health conditions similar to mine have created new opportunities for friendship that I would never have found otherwise. I am so glad that I have managed to not be frozen by the things I can’t do anymore, that I have not turned to a pillar of salt with regret over what I have lost in the past several years, because that would have denied me the new people and opportunities that have come my way and those still waiting just around the next corner.
It’s different making friends all over the country, even all over the world, without ever meeting them in person, but this is the modern age where distance is no longer an impediment. I talk with my new friend Amy, who lives in New Jersey, as if she’s next door and I truly feel no less close to her because she’s not. I interact with people in distant, isolated places where there is no one close by who understands their conditions or how it must feel to be so changed by uncontrollable disease. Being able to give them an understanding ear gives me a huge sense of satisfaction. Through all of this I am also finding a voice with which to write more in the future and that is something I can do without leaving home. Interestingly, the charge that writing gives my internal creative “battery” is not dissimilar to what I feel from a day out shooting photographs; so in some sense and as I am beginning to see it now, the loss of one has led to the creation of the other.
I understand the pillar of salt warning in a different way now. It’s about not looking back in a way that petrifies your future. It’s about not being so upset about what you have to leave behind that you can’t move forward in your life, so regretful that you turn into an unmoving, lifeless pillar of salt who is left behind by everyone else who goes forward with their lives.
So, I am learning and I’m trying to remember not to look back but instead to look forward to what’s coming, whatever it might be. Still, sometimes it is still very hard not to look back.
When we named our son, we were told that his name in the Hebrew meant “to hear or be heard” with some connotation of hearing a different drummer. I had no idea at the time how true that would be about him, both in his penchant for being heard and his marching to a slightly different drummer. At the time, I just thought, “Cool, that’s the way I’ve always been, too!” I didn’t even know back then how true that was going to be for me, either. I was a healthy, first-time mom with nothing but hope for the future.
Honestly, maybe “marching” isn’t quite accurate in my case now, but I think the phrase applies anyway. For this post I am going to write a different story about my experience with MS. This story might be different from most of the stories you’ve heard, it’s different from most I’ve heard, and that’s why I want to tell it. It’s not that I think my path is the right path for anyone other than me. I share it because it might be a path that would be good for someone else and it is a path that is not often heard. Almost daily I review my choices in comparison to what I read from other people, always wondering if where I am today would be different had I approached my healthcare, specifically the treatment of my MS, differently…most assuredly the result would have been different, but would it have been better? Maybe so, maybe not, but I value the comparative process for its ability to give me some hindsight as I move forward every day, making new decisions with my doctor as to how we’ll proceed from here.
I have heard the stories of many, many MS patients from all over the world. I really don’t know how representative of all MS patients they are, or how statistically accurate my perceptions are based on these stories, blog comments and posts, articles on information sites, entries on discussion sites, and stories in periodical magazines and papers. What I can say is that among all the stories I’ve read and heard, I have seen some definite patterns among these patients. Rarely do I read a story from a patient whose path sounds very much like mine. Don’t get me wrong, my symptoms are very much like everyone else’s, each of us having our own particular collection but sharing the typical types of problems. It is my treatment path that is so different from most I’ve read. I wonder if there are others like me who just aren’t writing now, or if I really have had a different experience from most.
I am particularly interested in patients who have had MS as long as I have. I have 20 years of history with this disease and 20 years of experience living with it, around it, and despite it. I have learned a lot along the way and figured out a lot of coping strategies, but still I like to hear what other people have discovered works for them…I never know when something they do might work well for me, too.
Since we’re all a little different, let me start with a brief history of my version of MS in case you haven’t read all my previous posts. If you have, then you can skip the next 5 or 6 paragraphs…🙂
In November, 1989, I was walking along in the zoo with my husband, 2 kids and my father-in-law. I was pushing my 8 month old in the stroller when suddenly I felt a feeling like a switch was tripped in my head that sent an electrical shock-like feeling traveling from my head down my right arm and right leg causing my right arm and leg to instantly become intensely tingly and the muscles rigid. I was literally frozen in my tracks. I called to my husband and he rushed over to where I was standing like a statue. The spasm passed in a minute or two and he helped me to a nearby bench where we sat for some time until I felt like walking on to the car.
Those spasms continued to happen frequently, spontaneously several times an hour and additionally, every time I moved, talked or laughed. I felt a continuous and very disturbing buzzing sensation all over my body and very quickly my muscles became very sore from the repeated spasmic tensing.
When we went to the emergency room, the doctors did some blood tests and a physical exam but were stumped. They gave me a prescription for a muscle relaxer and told me to find a neurologist. The muscle relaxer, actually a central nervous system depressant, helped immediately to reduce the buzzing sensation and lessened but did not alleviate the spasms that were gripping my right side. They reassured us that whatever it was, it was not life threatening and that I would be ok until we got in to see the neurologist.
We got in to see a neurologist a few days later. He ordered an electro-encephalogram while the technician watched my spasm activity and marked on the read-out when each one happened…this gave him no useful information as the spasms did not show up on the EEG as anything unusual. Other symptoms had appeared in the few days before I saw him, of which he took note in my medical record…slight slurring of my speech during the spasms, nystagmus in my eyes when really tired, extreme muscle weakness, dizziness and unsteadiness, an odd kind of nausea that was a kind of vertigo, an electrical shock sensation when I tipped my head downward (l’Hermitte’s symptom), uncoordinated gait during spasms due to inability to control the right side, tingling and numbness in extremities along with a general buzzing-like sensation everywhere except my head and a pattern of spasms happening whenever I attempted a movement…triggered by intention, the doctor said. I was particularly puzzled by the stimulation of spasms if I laughed; I began to try not to, which was as unpleasant as all the rest of those symptoms.
The doctor saw the MRI I had a few years earlier for headaches and said it didn’t show anything he could use to diagnose the problem. He and the radiologist who originally looked at the MRI when it was done both said there were white spots on my brain, but back then they didn’t know they were MS lesions! He conducted a neuro exam and then announced that none of the tests were definitive and he would have to observe my condition over a period of several months to determine the diagnosis by differentiation from other diseases through observation. That was and sometimes still is the common way to diagnose MS and I am sure that many of you had that same frustrating answer if you were diagnosed back in the Stone Age. He finally diagnosed MS a year later by which time I had already figured that out for myself just based on what I read during that year. He didn’t call it Relapsing/Remitting MS for at least another year.
There were no available therapies for MS at that time, so I set about trying to figure out what helped and what made it worse. My different drummer was beating out the pace for me, I didn’t have time to dawdle, I had children to raise and a home to keep, and I couldn’t just sit there with a disease no one knew how to treat. I started forcing my body to do what it didn’t do normally anymore and that helped a lot. It was 20 years before anyone confirmed with me that my thought, keeping the nerve pathways active in areas where they were messed up, was a good one…it just made sense to me and I saw it work over a period of time. Reducing saturated fat and increasing lean protein in my diet helped, too, it seemed to give me more strength and energy. I learned the getting a lot of sleep every night was crucial to functioning as well as possible. I became very conscious of hygiene with everyone who stepped into our house once I realized that illness with fever completely debilitated me for a period of days. After that started, we were the healthiest family in town, no flu or cold or anything for years at a time! All of these things still help and I continue to do them.
The symptoms that appeared in my first episode took a little more than a year to remit, but they did fully remit and I was symptom free, except for the buzzing, for 5 years. When I had my first relapse 5 years later, it was much milder than the original episode and it remitted in a couple of weeks, almost completely except for a little numbness in my toes and the ever present buzzing. I still take the CNS depressant every day for that and I don’t really notice it anymore, it is sort of like background noise at this point. I continued to be vigilant about rest, diet and hygiene.
About 10 years after that relapse, my RRMS turned into Secondary Progressive MS. I say about 10 years because this was a gradual transition, I began to have more symptoms that developed gradually and stayed instead of going away as they do in RRMS. I began to notice little changes, slight symptoms, at about that time but it was not real obvious what was going on. I kept expecting it to be a prelude to an attack that never came. I haven’t had what I would call a relapse, a full-blown attack, since changing to SPMS; it is more just a slow development of more symptoms. It is only in hindsight that I know approximately when that change occurred. I had about 16 years of RRMS from that first episode that lasted a year and including that one serious but short relapse until the change to SPMS about four years ago. The literature I’ve read says that it is common for that change to occur about 15 years after the initial diagnosis of RRMS, so I guess I was right on schedule, maybe for the first time ever!
When I heard about Betaseron and immune system modulating (suppressant) therapies like Copaxone coming onto the market in the early 1990s, I approached my doctor about them, asking questions and wanting to know his opinion about using them. I will never forget his terse answer, “I don’t do those things with my patients.” Ok, so back then they were new and experimental and to many doctors, unproven, I could accept that up to a point. I went away and decided to look into the drugs anyway, finding as much info as I could back then, not having access to the internet. I figured if I decided I wanted them I could always find another doctor. I eventually decided for myself, that I didn’t want to do the interferon because the side effects seemed terrible and it was something incompatible with having children and breastfeeding. I’m glad I made that decision at that time. When Copaxone came out a little later and my doctor still was not prescribing those things, I again investigated and thought that I didn’t want to suppress my entire immune system to prevent relapse of symptoms that didn’t seem that bad. I could find no info about how taking it might impact having more children, but honestly, the immune suppression worried me more. I began to evaluate every treatment that became available from a perspective of whether it made sense to me in the healthcare of my whole body, not just from the perspective of MS therapy. I still maintain that conviction; that the health of my whole body is the goal, maximizing all systems together and not treating any part at the expense of any other part. It has taken me 20 years to fully develop that whole plan and to put together a team of doctors who support me in that effort as well.
So here’s where I am now…I live on my own in a tall house with stairs…don’t laugh, those stairs are part of my physical therapy. My kids are off at college now so I manage most things myself even if the pace I very slow. I go grocery shopping, drive myself to doctor appointments and to the gym for physical therapy. I do a two-hour physical therapy routine each week which tremendously helps my strength to walk and move. I occasionally go out with friends and entertain in my home, which is a great pleasure for me. I have to rest often and schedule activities carefully to maximize available strength, but most of the time I can do what I need and want to do. In the past few years, enzymatic digestive problems have been added to my set of symptoms, so I have begun to learn how to properly add dietary supplements to my diet to make sure my body has all it needs to stay healthy. With the addition of those supplements, I saw an immediate reduction in digestive problems but even more impressive was the marked improvement in blood pressure, cholesterol readings, and arthritis symptoms. Great!
My MS is now most focused in my left leg below the hip, with some tiny traces of muscle weakness in my other leg and in my hands when I have over exhausted myself. I am extremely heat sensitive and moderately cold sensitive so if I get stuck outside in the summer heat for more that a few moments, my whole body stops working and I have to sit somewhere cool and recover. Fortunately, where I live it is not extremely cold or cold for very much of the year, so that problem is minimal. I have never had optic neuritis or any eye symptoms except nystagmus in the early years after my first episode. The skin over my toes and feet is pretty numb but underneath is not so I can feel what my feet are doing. I rarely get sick with anything, but if I get a virus or something with a fever, I am totally debilitated and bedridden until the fever passes.
With SPMS, I have redeveloped an unbalanced, unsteadiness to my gait. Strengthening my “core” with physical therapy has helped with that a lot but still sometimes I stagger a bit, or suddenly turn in an unexpected direction. I have the ubiquitous fatigue as well, sometimes in my whole body and sometimes just in specific muscles…you know the kind I mean, not like your arm is tired from playing a set of tennis and not like you didn’t get enough sleep last night, but rather the tiredness down to your bones, like the energy has just been wrung out of those limbs completely and you can’t lift them at all. Sometimes I get a little dizzy, too, and the balance is a little off. That’s where the infamous Big Stick comes in; it helps a lot with balance and allows me to maintain good posture. I have other auto immune diseases, too, thyroiditis, B12 deficiency, both controlled with medication, and arthritis which just is what it is….it has not been diagnosable so far as any particular type, it doesn’t fit any mold. My joints hurt and crack and stiffen up to a different drummer, too.
All in all though, my basic systems are very healthy, especially for my age…good blood pressure, all organs functioning well, great cholesterol readings, good vision and hearing, good cardio-pulmonary functioning, and I’m hardly ever sick with the usual stuff that goes around, maybe once every 5 years. At least I don’t have to worry about all this stuff; the bigger problems are enough.
So enough about me; what difference have I noticed among my blog, Facebook, and gmail friends and acquaintances? The most striking one is that almost everyone I’ve come to know or read about began a drug therapy regimen early on in the course of their disease, whereas I did not.
Most people who write on my Facebook page or to my email account or comment on this blog talk at some point about the drug therapy regimen they are on. They may extol the virtues and benefits of the drug their doctor has prescribed for them or they may bemoan the fact that everything they have tried has disappointed them or that they eventually had to stop taking the drug for one reason or another. Right now everyone is talking about having the flu or colds or relapses while I am just glad to be getting some cooler weather! I haven’t read stories from anyone who never took any immune modulating drugs of any kind, no Betaseron, no Copaxone, Avonex, Rebif, or any of the other drugs and therapies. Where are the others like me? They must be out there somewhere!
Even though most patients with whom I communicate took the path of drug therapy and I did not, I don’t see much difference between where I’ve ended up after 5, 10, 15 or 20 years compared with all the people whose therapy stories I’ve read. For the most part, everybody does well in the early years of RRMS, has relapses periodically, sometimes on the drug therapy, sometime when they go off. I sometimes wonder if the relapses that happen when they get off the drug are a sort of rebound effect, maybe not; it’s just a thought. But then I wonder about the relapses they get while on a drug that is supposed to prevent progression to some degree and wonder what that means. I don’t know which group, on drugs, coming off drugs, or never on drugs, has more relapses or worse relapses; that would be an interesting statistic to see. I do think I’m seeing them have more common illness than I do; maybe they have children bringing germs home from school or maybe they are not big hand washers like I am or maybe the immune suppressing drugs are allowing that. That’s something people have to weigh when considering whether to use a drug; what the side effects might be and what they are willing to tolerate.
All of this raises “what if” questions in my mind: What if I had started taken Betaseron or Copaxone when they first came out; would I be in a different condition now? Would my MS be significantly different, better or worse? Would my general health be better or worse than it is today? What if they had chosen a path more like mine, how would their conditions be different today? I’ve talked to people who began taking the drugs as soon as they appeared on the market and who are more debilitated than I am now and others who seem in about the same condition as me. Am I doing pretty well having no drug therapy all these years for reasons related to my own individual case of MS and how it progressed on it’s own, or did the choices I made contribute to that outcome? I guess we’ll never have definitive answers to the “what ifs” no matter what scenario we talk about because with a disease like this one, there is no predictability of progression or outcome. And I will always have “what ifs” popping into my mind…I think that comes with the different drummer, too.
It amazes me that I stumbled onto a path so different from everyone else and for almost 20 years it stayed that way. Part of it was my doctor’s attitude that pushed me in that direction. But I couldn’t just sit there watching my body destroy itself, I had to do something myself. Interestingly, I hear he has changed his ways with new patients though he never changed with me. When my symptoms started to change about 4 years ago, one of my other doctors mentioned a doctor she thought might be better for me at that point. On her advice, I left the original doctor’s practice a year ago to join a more research oriented physician, only to find that not much has gone on in the development of therapies for SPMS. Still, I am finding new ideas and new things to try with SPMS, some things are helping a lot, some not so much. I am finding that maybe my drummer is even more important now that I have SPMS, to which the medical community has not paid much attention.
I’ve always marched to the beat of a different drummer, doing things differently from everyone else, being observant and trying things out for myself, listening to my doctors but making decisions based on what made sense to me. That’s the right way for me and now I wonder whether the result of the path beat by my drummer is really so different from the more conventionally traveled path. It’s hard to know really, but I do know this, my drummer’s path was and is most comfortable for me and has always felt right for me. In the end, that in itself is a very important part of good healthcare: doing what’s right for you and doing that with which you are comfortable. I also really value how much I’ve learned on this path, having to consider all the options and making my own decisions at every fork in the road. It has given me some sense of control over this uncontrollable disease and I think that’s very important to maintaining a good state of mind.
For better or worse, this is my path, marching to a different drummer.
Linda Elsegood has a very interesting post on her LDN Research Trust site in which she talks about greatly improving her condition through diet, supplements and low-dose naltrexone (LDN). You can see our conversation about this at the bottom of the comments to her blog on the link below.
I wonder what experiences everyone else has had with improvement through diet. Please add your stories here so we can all benefit by your experience. Most of us are not going to hear very much about that from our doctors, we need to hear it from each other.
I’m anxiously awaiting your comments!
I’ve been doing a lot of research and networking on MS sites lately. I spread the word about my own blog that way and I learn a lot in the process. I have found a lot of blog sites where conversation is quite lively and other sites that give information of all kinds. Even better, I’ve made some new friends from all over the world. You can meet some of them in the comment section of my blog here or on my Facebook pages linked in the right margin. The question and answer type blog sites are packed with people and they talk about all kinds of things…mostly related to MS, but sometimes not…interesting either way! I look forward to meeting more of you commenting on my blog stories and starting conversations here, too.
Someone asked me the other day why I put links on my blog that don’t exactly match my way of thinking….well duh! I am sure that everyone reading my blog has a mind of his or her own and might think differently from me! I put links on here that have information of all kinds and from as many sources as I can find not only because I want to know what’s going on out there but also because the more information you and I have, the better we can evaluate what treatments and approaches might be best for us in our individual situations.
My thought is, read all the information, try it on for size, and if the shoe fits, take it home with you. If not, leave it for someone else.
When I go see the doctor, I like to go with questions and topics in hand that I’ve read about online and think might be worth considering for my own treatment. That has often helped my doctor and me to better match treatment options to my needs and my preferences and thereby choose treatments that work best in my life, and that’s very important. After all, treating our MS is really about maintaining quality of life and understanding how that is defined by each of us as individuals is the key to achieving the best quality of life possible. The only way to really do that is to consider the pros and cons of all the options, to hear the info from the doctors, the drug companies, and the patients who go before us, and then really think about how we feel those options would, or would not, make our lives better. We have to be well informed in order to participate in defining and maintaining the life we can have despite MS. It’s by participating that we will get what we want…to the degree that it’s possible.
I work on this research and networking almost every day and I find more stuff to list almost every day. Even when I don’t find a new site, I find new info posted on sites I frequent and that’s great, too.
I hope you’ll take a look at the Links page in the right margin and check it regularly for new ones. I look forward to a growing group of you joining our conversations here and on my Facebook pages, too. I am so enjoying getting to know you all!