MS & Me: A Community Blog for People Living with MS

  • Photo for article: Diagnosed with MS. Now What?

    Diagnosed with MS. Now What?

    This week Christina McDonald goes deep into the experience of being diagnosed with MS. From being scared and grieving, she’s learned to doing things differently. More than ever before, she’s chasing her dreams.  There was something in the words “You have MS” that filled me with mixed emotions and changed my life. The different stages of grief I went through after my diagnosis somehow helped me come to terms with MS.  If you are newly diagnosed, it’s important that you know that these feelings are normal. Yes, they may recur, but things do get better. There have been days where I have felt chronic pain and others where I have sat feeling sorry for myself. And there have also been good days. I’ve learned to accept that my body has new limitations. I am still the same person and am still able to do things. I am just mastering new ways of doing them. My diagnosis is not what defines me; it has opened a new chapter in my life. It has given me a new outlook on life and I know I want to live it to the fullest of my potential. After my diagnosis, I started to put my health into perspective. I began looking after my physical and mental wellbeing and started to eat healthier. I feel that I am one of the lucky ones - I’m fortunate enough that my body allows me to do gentle exercise. It’s important to remember to listen to your body and what it is telling you. If you are having a bad day where you need to rest, don’t be afraid to use your voice. The people who love and care for you will understand if you have to cancel plans due to fatigue or bad symptoms.  My diagnosis has given me a thirst for a better life and sparked a drive in me to pursue my dreams and ambitions. I know MS couldn’t stop me from achieving my goals but it has definitely changed my perspective on things, especially chasing my dreams. I learned not to worry about the things that aren’t actually important but rather to appreciate the little things that are. I have struggled since my diagnosis but it has also put things into perspective for me. I decided to return to education to do my Masters in primary education and I honestly don’t think I would have had the courage to do it if it wasn’t for diagnosis.  Being given an MS diagnosis is tough and it can be scary but I have tried to use it to encourage me rather than frighten me. Research and educate yourself on MS using the wealth of material that there is available. Don’t rely on Google to tell you what’s going on! Educating yourself gives you the knowledge to educate your friends and family and to also spread awareness. If you have recently been diagnosed with MS and are worrying about what happens next, remember MS is not a death sentence. You can still do the things you want to do in life, you’ll just be doing things a bit differently.  

    Author: Christina McDonald - 19 Apr 2018

  • Photo for article: Life’s Lessons Learned by the MS & Me Blog Team

    Life’s Lessons Learned by the MS & Me Blog Team

    With a combined 175 years of living with the diagnosis of multiple sclerosis, the MS & Me blog team shares some golden nuggets of lessons learned. We asked our cadre of MS & Me bloggers what lessons they might have learned living with multiple sclerosis. Our editorial team was surprised – but then, once we thought about it we weren’t surprised at all- at how similar our contributors’ advice was. Yes, everyone’s MS is different. And just as everyone’s life experience differs, the way we cope with the challenges and adversities the disease visits upon us will vary. Still, there were several common themes running through their responses and we hope you find them helpful. #1 Don’t let others tell you how you should feel, behave, or live your life with MS. Nobody knows your life better than you; listen to your body. Learn to deal with insensitive comments, because people can say the most insensitive thing.  #2 It’s okay not to be okay sometimes. Give yourself permission to leave that super hero cape in the wardrobe. #3 Accepting help is not a failure and doesn't mean you are a burden. People who care about you are just as frustrated with MS and want to do something to help. It makes them feel better. The price to be paid for overdoing things can be high, so learn to differentiate between doing as much as you can and doing as much as is reasonable. Ask yourself, “Can an assisted device of some sort make this task easier?”  “Would that improve my quality of life?” If the answer is yes, use the damned device. #4 Self-care is not the same as being selfish. It’s okay to put myself first. It’s okay to say, “No”.  #5 Don’t be afraid or embarrassed to talk to your medical team about anything… ANYTHING! From sex to toileting to cognition to palliative care and your fears, talk about it. Embarrassment gets in the way of you receiving the best possible care.  #6 You have nothing for which to apologize when it comes to multiple sclerosis. MS is not your fault and MS is not something of which you need be ashamed, so MS doesn’t get an “I'm sorry”. Save the apologies for when they really matter.  #7 Learn to adapt to the moving target of your ‘new normal’. Make allowances and be realistic about what you can and can't do. Everyone has his or her limits. We just might face them more regularly. #8 Life stops for nothing, not even MS. Don't let the disease stop you from living, loving, and laughing. MS will take the steering wheel if you let it…. Don’t Let It!  #9 Be kind to yourself. Living with an oft-invisible illness can be tough. Be grateful for what you have and still be willing to share of yourself with those who make a positive difference in your life and the lives of others. You have great gifts worth sharing. #10 Not everything that goes wrong with your health (or your life, for that matter) is necessarily MS related. If you need to talk it out, find someone you trust to talk to. If it’s a professional, make sure they’re trained and accredited. Bonus Lesson: Don't ignore your medical team's advice. That said, it’s your life. If you have done the research and feel that it’s best for you to disregard their suggestions, don’t go rogue. Let them know what you are doing or not doing, what you are taking or not taking and why because, well…see lesson # 1. Wishing you and your family the best of health. Cheers.

    Author: MS & Me Blog Team - 12 Apr 2018

  • Photo for article: MS Fatigue

    MS Fatigue

    Read the first blog for MS and Me from Katie St. Lawrence (24). She shares her experience of what it means to have fatigue, how she deals with it and how, thanks to being strategic about rest, energy and listening to her body, life is as enjoyable as ever. I never knew when I was first diagnosed that fatigue would be one of my biggest challenges in my battle with multiple sclerosis. During the diagnosis process, I was always asked by the doctors and nurses how my energy levels/fatigue were. I never had any complaints.  This changed a year after my first relapse. It was during the summer time when I started experiencing fatigue. I began to notice that the smallest of tasks would leave me feeling wrecked and needing to take a break. Jobs like preparing the dinner or cleaning my room (which never used to be an issue for me before) left me feeling like I had just completed a mini-marathon! I started to get jealous when I looked around and saw other people around me doing these tasks without any difficulties. I also felt angry with myself when I thought about all the times, pre-MS, when I sat around doing nothing. I could have been enjoying myself! Little did I know then that I would be suffering from what I could only describe as the Ultimate Tiredness x10 for basic tasks. Katie’s Fatigue = waking up after a full night’s sleep only to feel as if I’ve not had any sleep at all. Or being so tired that I can barely move and have to talk yourself into moving. Fatigue is when a hot shower can drain every ounce of whatever remaining energy out of your body. It leaves you feeling completely shattered and defeated.  Like many people with MS, I have my good days and bad days when it comes to dealing with fatigue. Fatigue is with me all year round but is so much worse in the summer time in the higher temperatures. On my good days I can go most places or do most things without it affecting me too much- only a little bit fatigued. But on my bad days, I wake up feeling completely wrecked and basic tasks almost wipe me out. Since the first year, I have learned to deal with my fatigue. I’m more strategic now- if I have an event coming up I prepare by taking things easier in the days leading up to it. I have also learned to listen to my body more and if I feel as if I am over doing things, I take a rest or get an early night. While fatigue can be extremely difficult to deal with, I try not to let it rule my life. When I listen to my body, I can manage. Things are very different to pre-MS but  despite the fatigue, by making small changes, listening to the changing needs of my body, the most important thing is I still get to enjoy myself. 

    Author: Katie St. Lawrence - 05 Apr 2018

  • Photo for article: Living With MS For 20 Years

    Living With MS For 20 Years

    For her very first MS and Me blog, Teresa McShane delivers a tale of her fast-paced and effervescent years as an advertising executive in London but soon discovered that life had other ideas.  I never realised I shared the renaissance of my existence with such an auspicious period in cultural history. Apparently, 1994 was a very good year. I say, the renaissance of my existence because pre-1994, I was the original version of me. The version that at 23 could see my future in the fun, fast and furious lanes of the world of advertising in London Town. The version of me that was willingly and wantonly soaking up the endless media messages, the flashing lights, the billboards, the posters in the tube stations, the TV ads. It was all in your face… all in my face! Orange Tango’s ‘slap in the face’, Eva Herzagova’s ‘Wonderful, Wonder Bra’, Pot Noodles, the surreal golden Dunlop tyre man and Rab C. Nesbitt in the latest Hamlet Cigar ad. I was all about the media then. And anything was possible…. I soon discovered that life had other ideas.  Everything I thought about myself and how my life might be was blown to smithereens by a diagnosis gleaned from the base of my spine. The bright lights and dizzy posters towering above me that once served as aspirations and opportunity now weighed heavily on me and ground… me…down. I stayed down. I was too scared to come up. Too scared to wonder what might become of me?   By the age of 21, I had already backpacked around the world, worked in Dublin, Paris, London and Sydney and swum with alligators. And now, here I was at 23 at what seemed like the end of the road…. The ‘old me’ had died. When you are working on an advertising campaign you have to figure out your strategy. Work out who you’re talking to and what you want to say about your product. Stay close to the brief. If it’s not working, or the strategy changes direction, then you need to start again. And so, I did. I cannot deny it has been a rollercoaster of a journey for me, both mentally and physically. In the early years, the arrival of erratic and spontaneous symptoms cast the shadow of uncertainty over my future and played heavily on my mind. It drained me emotionally and the light at the end of the tunnel was very dim. As time went by, I ‘got to know’ my illness and figured out, for the most part, how to work around it. I adjusted my career aspirations and succumbed to my physical limitations.   Over 20 years later, my main brief is my family and looking after my two amazing boys. MS has cramped my style and I do get pangs of anger and regret of what ‘might have been?’. But who the heck knows what might have been?  It’s not 1994 anymore. This is where I am and by all accounts, 2018 is shaping up to be a very good year. 

    Author: Teresa McShane - 29 Mar 2018

  • Photo for article: Treatment Interventions Menopause and MS Part 2

    Treatment Interventions Menopause and MS Part 2

    Part 2 of a special feature on Menopause and MS from Bobbie Severson, ARNP from the MS Centre at the Swedish Neuroscience Institute in Seattle, Washington, US.  Treatment interventions for symptom management of menopause and MS. An integrated approach to menopause and MS management is desired since the MS specialist may be the first to notice the symptoms of menopause and how they impact MS. He/she may therefore play a critical role in managing these symptoms or directing the woman to her primary care provider or women’s health care specialist/gynecologist. Identifying which symptom(s) are due to MS versus menopause could positively affect treatment outcomes. For instance, if a new symptom such as bladder dysfunction was due to MS, it might require a change in disease modifying medication (DMT), lifestyle, or adjustment of a general symptom management medication (eg. oxybutynin). However, if the new problem was caused by menopause, lifestyle or hormone replacement therapy (HRT) might be a more appropriate choice. Overlap of common menopause and MS symptoms and treatment interventions Fatigue: Fatigue is one of the most prevalent and disabling symptoms in MS. During menopause, fatigue often increases in severity.  The health care provider’s responsibility is to evaluate all possible contributors and not assume the fatigue is due to solely to MS and/or menopause. For example, the provider will need to assess such factors as medical history (eg anemia, hypothyroidism, depression, sleep apnea), lifestyle (caffeine consumption, sleep hygiene, activity level, work routine), medications, as well as complementary and alternative health care practices. Target the treatment to the primary problem(s). Tailor the interventions to the individual.  Mental health: Depression and anxiety are more prevalent in MS than the general population. Depression can negatively impact other MS symptoms such as fatigue, cognition, and pain. During the menopause transition, women may experience increased depression and anxiety which can further affect menopause and pre-existing MS symptoms. Treatment interventions should focus on psychotherapy (individual counseling, group therapy), social engagement, exercise, and medication management if necessary.  Cognition: Cognitive impairment may affect up to 50% of people living with MS at some point in their lives.With menopause, women may also report changes in attention, memory, executive function, and word finding difficulties. Treatment interventions could include neuropsychological testing, cognitive behavioral strategies, and more optimal management of MS and menopause contributors. Bladder: Urinary frequency, urgency, incontinence, and urinary tract infections are common in MS.  Menopausal symptoms may also include urinary stress incontinence and urinary tract infections due to a combination of urogynecologic and hormonal changes. These symptoms might be intensified in women with MS who have pre-existing bladder dysfunction. Management to include lifestyle interventions (timed voiding to keep bladder volume low, limiting fluids a few hours before bedtime to reduce nocturia, reduction in bladder irritating beverages to reduce urinary urgency and frequency) and medication management as warranted. Sex: Problems with decreased libido, altered genital sensation, atrophic vaginitis, inadequate vaginal lubrication and alterations in body image, self-esteem and sexuality may occur with menopause and MS. Interventions, regardless of cause, include a comprehensive medical evaluation encompassing a gynecological history and examination, counseling and assessing medication and equipment needs. In assessment, it is important to inquire about abuse and domestic violence since these issues can affect response to treatment interventions. For vaginal dryness, using water-soluble lubricant is helpful. For decreased sensation, vibrators can enhance stimulation. The introduction of new sexual techniques, such as body mapping, can improve intimacy, increase arousal and orgasmic response. A woman may also want to participate in individual and couples counseling to enhance communication and understanding about sexual concerns, treatment options, and goals of care. Much research is being done with hormone replacement therapy (HRT). A woman should discuss this topic with her primary care provider and gynecologist since there are several important factors to consider. Vasomotor symptoms: Many women with MS are heat sensitive. Hot flashes while perimenopausal can aggravate a woman, with MS, who has heat sensitivity and further contribute to sleep loss, fatigue, bladder, and sensory problems such as pain. Vasomotor symptoms may include hot flashes, night sweats, and cold flashes associated with menopause. However, it is important to realize they may be misinterpreted as MS exacerbations. Management to include, but not be limited to, air conditioners, cool drinks, cooling vests and/or collars, layering of clothing, exercise in cool rooms, and use of natural fibers for bed sheets, versus synthetics, since they are the most breathable and can wick away perspiration and keep a person cool.   According to recommendations from the North American Menopause Society, estradiol is the most effective therapy for treating vasomotor symptoms. Other options include Selective Serotonin Reuptake Inhibitors (SSRIs), selective noradrenergic reuptake inhibitors (SNRIs), gabapentin and additional medications. Sleep: Sleep disturbances may be managed by implementing good sleep hygiene principles, sleeping in a cool room, limiting fluids a few hours before bedtime, no caffeine before bed, taking a cool shower/bath before bedtime, and use of natural fiber sheets. Another important sleep recommendation is to shut off electronic devices a few hours before bedtime to enhance the release of melatonin. If people cannot live without their electronic devices, try using blue light screen blockers or goggles to reduce exposure from these devices. Hormone replacement therapy The North American Menopause Society recommends taking an individualized approach to HRT. This means assessing a woman’s risk/benefit profile. Rick factors, include but are not limited to, a woman’s age, history of breast cancer, heart disease, blood clots, stroke, hysterectomy status, and whether or not she smokes.  According to the Mayo Clinic, newer research exists which shows there is some scientific evidence to suggest HRT may be a good choice for certain menopausal women, depending on their risk factors.   HRT may help with bone health and it may possibly be neuroprotective.   HRT may improve some menopausal symptoms that can aggravate MS symptoms (eg fatigue, poor sleep, low libido, mood disorders).  One’s primary care provider and gynecologist/women’s health care specialist need to consider risks/benefits with respect to the most current HRT research when advising a woman about treatment options. The goal is to develop a mutually agreed upon therapy plan based on best practice guidelines. When considering HRT, the health care provider should start with lowest dose to be taken for the least amount of time to achieve the desired outcomes. The woman should also follow up for regular health care exams while receiving HRT. Important to understand that utilization of HRT is not for everyone and must be determined on an individual basis.  Directions for future research 1. Impact of hormone changes with menopause on MS disease course. 2. Role of HRT on MS disease course. 3. Larger studies to determine if HRT can be safely used to reduce the symptoms of menopause and MS. 4. If declining levels of estrogen adversely affect the pace of neurodegeneration. 5. Longitudinal placebo-controlled trials of effects of HRT in women who start perimenopause compared to those who start post-menopausal. 6. Neuroimaging studies to identify neurodegenerative changes in women, with MS, who are transitioning through menopause. 7. A better understanding of MS and menopause to more accurately evaluate therapeutic MS disease modifying therapy interventions. 8. Larger studies evaluating race as a variable in menopause and MS research and interventions Conclusion Given an increasing prevalence of women being diagnosed with MS and a median age of women living with MS that are close to menopausal age, future studies should be directed towards investigating whether modifiable changes at menopause can positively impact the future direction of the disease and enhance quality of life for all those affected by MS. See below for references of research used in this article. Here is a video of Bobbie Severson speaking about her work References i Brunk D. Clinical Neurology News, June 7, 2015 ii Gold EB, Sybil L, Crawford NE, et al. American Journal of Epidemiology July 2013; Vol 178(1); 70-83 iii Bove R, Healy BC, Musallam A, Glanz BI, De Jager, PL, Chitnis T. Multiple Sclerosis Journal 2016, Vol 22(7), 935-943 vi Bove R, Chitnis R, Houtchens M. J Neurol 2014; 261:1257-1268 and Gold EB, Bromberger J, Crawford S, et al. Am J Epidemiol 2001; 153: 865-87 v Rocca WA, Grossardt BR and Shuster LT. Brain Res 2011; 1379: 188-198. vi Bove R, et al; J Neurol. 2014; 261 (7): 1257-68 vii Bove R, Healy BC, Musallam A, Glanz BI, De Jager PL, Chitnis T. Multiple Sclerosis Journal 2016, Vol 22(7), 935-943 viii Holmquist P, Wallberg M, Hammar M, et al. Maturitas 2006 ; 54 :149-153;  Smith, R and Studd JW. J Royal Soc Med 1992; 85:612-613; Wundes A, Amtmann D, Brown T, et al. Int J MS Care 2011; 13: 47  

    Author: Bobbie Severson, ARNP - 22 Mar 2018

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