Johns Hopkins researchers have identified a mutant gene in fruit flies that couldn’t sleep. This could mean another step in understanding sleep patterns and sleep disorders. Read more.
I became interested in medical cannabis ever since I noticed sometimes my left hand and arm are stiff. I had read about its therapeutic benefits when it came to muscle spasms and spasticity and I tried to learn more about it. I came to the conclusion though, that unless the use of cannabis for medical purposes is legal where you live, it’s difficult to get the best of it. So when I heard Sativex was being approved I thought that was another option finally being available to alleviate symptoms. It was developed specifically for ms patients and it is formulated as an oromucosal spray which is administered by spraying into the mouth. If it ever comes to that point where everything else has failed and my neurologist thinks it’s worth giving it a shot, I’ll definitely try it.
Read more about medical marijuana here:
Check out the i am a MoSaic project, a collection of images portraying the many faces of multiple sclerosis in Connecticut. It is a collaboration between photographer Mike Marques and the National Multiple Sclerosis Society, Connecticut Chapter.
Right after I was diagnosed, one of the many things I cried was “What am I going to tell people?” My neurologist was quick to answer. “Nothing,” she said. “You’re not going to tell anyone but your closest family and your boyfriend. You’re just going to live your normal life.” The reason, she said, is I wouldn’t believe how much prejudice and misconceptions there are about neurological conditions. I have to admit, to her credit, that before my diagnosis I thought multiple sclerosis was a disease that only happened to people over forty. So, if I had misconceptions, it would be right to assume other people did too.
I ended up telling some of my closest friends as well as my family and my now ex-boyfriend, because the first year after the diagnosis was harder than I expected, and it came to a point where I just didn’t have the energy to make any more excuses. Reactions were very different: some people were great, other people, well-intentioned as they were, wanted to protect me so much I couldn’t help but feel smothered – and guilty because I wasn’t as healthy as they anxiously wanted me to be – and other people were just disappointing in their lack of support, seemingly wanting to distance themselves from “the issue” that was now a part of me.
In her book MS and Your Feelings Allison Shadday says “Keep in mind that although they may struggle to comprehend your illness, many people are simply unable to respond with genuine solace. Their apparent lack of empathy or understanding says more about their own inability to reach out than it does about your illness.” I try to remember this but sometimes I still get sad about those disappointments. And I still wonder how much I’m going to tell when I meet someone new.
If you’re looking for a self-help book about multiple sclerosis, Allison Shadday’s MS and Your Feelings was to me the most helpful out of all I’ve read. Allison Shadday worked as medical social worker, and she worked with a lot of ms patients when she was diagnosed with ms herself. Because she found it hard to find counseling after her diagnosis, she decided to specialize in counseling for people with chronic illnesses, in the hope that she could give these people more support.
MS and Your Feelings is very useful and complete. It provides a lot of information about the disease, but mostly a lot of information about dealing with the emotional turmoil that comes with it and finding positive solutions to physical, cognitive and emotional challenges.
I personally found very useful the section about us trying to shield from intense feelings or emotions because we fear those experiences may trigger an attack. However “climbing into a shell and hiding from life won’t insulate you from illness” either, so she suggests ways to manage it all. Her suggestions are realistic, down-to-earth, not patronizing at all, and varied, because what works for someone may not work for someone else. I still use some of the techniques to alleviate stress she mentions and I compiled some of her advice in a file that walks around with me on my smartphone and that I check as a reminder whenever I feel insecure, stressed out or I’m just being mean to myself.
Shadday writes both from a professional and a personal perspective, which gives the book a sense of being close to you and trustworthy. She tells stories about herself, often with a sense of humor, that highlight many aspects being analyzed. If you have thirty minutes, this interview with her also gives a glimpse of many things you will find in the book.
Visit the Amazon link for more info:
The first time I remember waking up after a couple of hours of sleep and not being able to fall asleep again I must have been around 15. It’s possible though that my sleep issues started earlier, as I remember always being a light sleeper and always having agitated nights.
Nowadays, when I think about insomnia I think about it as a chronic illness, as much as I think about multiple sclerosis and endometriosis. Because since I was since 15 I’ve tried everything you can possibly imagine to be able to sleep well. That included diet changes, meditation, yoga, exercise, not having anything in my bedroom except things associated with rest… you name it. The only thing that seems to work is medication. Unfortunately I need to be permanently medicated for insomnia because, as research suggests, my sleepless nights may have had a negative contribution to the development of my ms.
So, if anyone has suffered from insomnia like me and has found ways to manage it other than being medicated, I’d love to hear your comments. In the meantime I’ll leave you with Alfred Hitchcock’s insights about insomnia. 😉
I’ve never been very excited about stem cells therapy for two reasons: one is that it is still going to take decades before treatments based on stem cells are available, the second is because if you don’t find the causes to brain damaging diseases you can spend the rest of your life trying to repair your brain with stem cells that your body is still going to attack whatever it is it’s attacking, whether it’s myelin or other substance.
That being said, I still found this TED Talk interesting. Doctor Siddharthan Chandran explains that, contrary to what was believed some time ago, the brain does have the ability to repair itself, it just doesn’t do it well enough, or fast enough. So what can be done to help the body regenerate and what kind of therapies can we expect in the future?
Fatigue is the most common symptom in multiple sclerosis, with around 80% of patients reporting it. Out of all these patients, a large percentage of them also report fatigue as being the most disabling symptom. I definitely include myself among them. While I have other symptoms as well, they are not so prevailing or intense as fatigue. My fatigue is chronic. Even when I have a good night sleep, I may wake up feeling tired already. Sometimes I prefer not to shower on a particular day if that means I can spend a few more minutes sleeping. Totally gross, I know, but it’s that bad. Fatigue has also had a huge impact on my social life and on my relationships.
As I’m not one to keep my arms crossed, I searched for books about fatigue in multiple sclerosis. I found a lot of practical and useful advice, mostly regarding work, exercise, the way you keep your house, not asking for help or not knowing your limits, etc. However, I also started thinking about emotions and states of mind, and I found out that many of those can cause fatigue.
So what kind of emotions and states of minds can run you down?
Doctor Gabor Mate also gives a little insight about this subject in his book When The Body Says No. I’ll leave you with an except of a dialogue he had with the mother of one of his patients that absolutely had me stop in my tracks:
“She would always tell me when she was tired of me and she needed to rest because she found me tiring.”
“This is in the last months?”
“Why do you think that is? You can’t be tiring. There’s no such thing as a tiring person.”
“My personality would tire her after a while – it was too intense.”
“When does one get tired?”
“When you’ve been working. So you think it was work for her to be with me.”
“She had to work too hard around you.”