Do you ever feel isolated? I can be at home with my family and still feel lonely. I wonder if it’s because I sometimes feel like only a sliver of the person I “used” to be.
Monday, November 28, 2011
Wednesday, November 23, 2011
What a privilege and honor it has been to tell my story and to share my joys and struggles with the world through the “We Keep Moving” project. Never did I realize the impact that it would have on my family, friends and numerous others, most of whom I will never meet.
What are you thankful for this holiday season?
Monday, November 21, 2011
So, the holidays are approaching fast. There are presents to buy, friends and relatives to see, get-togethers to plan or attend, and meals to prepare or share. No wonder many of us greet this season with a mixture of excitement and panic – it’s easy to feel overwhelmed. And for anyone living with the overpowering fatigue of MS, just the thought of all this activity can be exhausting.
The shopping can be a major chore... the office celebrations start too late in the day…having people over is too stressful to even think about... people’s houses aren’t accessible…friends and family don’t really get it – they’re either trying too hard to be helpful and sympathetic (you know – those sad, worried looks that say “Oh, I’m sooo sorry”), or don’t understand the impact of MS at all (“But you look so good!”). All of these challenges can lead to feelings of loss, and a major disconnect between the way things are, the way people think they’re supposed to be at holiday time, and the way they used to be before MS came along.
Grieving over changes and losses is a process that ebbs and flows with the ups and downs of the disease. Like all grief, it can feel very painful at times, but it generally lessens with time. And believe it or not, the grieving process is what allows people to gradually let go of the way things were yesterday and begin to think creatively about how they can make them better today.
If you find that your mood has tanked, leaving you feeling sad or irritable most of every day for a few weeks, accompanied by a loss of interest in things that used to engage you, changes in your sleep patterns and/or eating habits, or thoughts about hurting yourself or suicide, let your healthcare provider know about it. Depression is very treatable. Getting a grip on your mood will make life – and the holidays – feel much easier to manage.
So if the holiday blues are grabbing you more than the holiday spirit, don’t hesitate to get the help you need – from family, friends, or a qualified mental health professional. And if you’ve found some good strategies to manage – and enjoy – the holidays, please share them!
Thursday, November 17, 2011
Are you tired of having MS? I am. I’m so tired of it I want to scream. Or at least vent, which is why I came up with the idea of venting regularly for the Society.
Monday, November 14, 2011
More takeaways from ECTRIMS/ACTRIMS – stopping MS, restoring what’s been lost, and ending MS forever
- First results from 3 late-phase clinical trials of new treatments – they include new oral options, and also therapies that are given infrequently. If they are found to be safe and beneficial, some of these treatments may become available in 2012 and 2013.
- Progress toward more individualized approaches to treating MS, or “personalized medicine.” The idea is to find imaging technology or biomarkers that might predict a person’s response to a therapy, or predict their disease course, to help with treatment decisions.
- Approaches to rehabilitation and exercise were presented for troubling symptoms like pain, cognitive issues, fatigue and tremor.
- Many new findings related to CCSVI are intriguing. While we don’t yet know the full story, there is exciting research underway in this area.
- New information about how our intestines influence immune activity could open up new doors to understanding and treating MS. And there is a lot being learned about other risk factors like genes, vitamin D and viral triggers. We’re supporting a new clinical trial to test whether vitamin D supplements, added to a standard ongoing therapy, can reduce MS severity.
Tuesday, November 8, 2011
We recently received a question about how to obtain accommodations when MS starts to get in the way of doing your job. What perfect timing! I was just about to write my first post on employment and MS …
- You work for an ADA-covered employer;
- You are “qualified” to do the job; AND
- You are a person with a disability as defined by the ADA.
- You must be able to perform the essential functions of your job. The ADA does not require employers to reduce essential job functions, but you can ask to change how you perform an essential job function. Usually employers decide which job functions are essential.
- Your employer does not have to provide you with your first choice in accommodations. The employer has to provide an accommodation that is reasonable and effective, if available—so be ready to discuss alternatives.
- How is MS affecting your job, potential job, or application process?
- Why are you requesting accommodations?
- What accommodations or changes to your work will be effective?
- What information will you need to provide to your employer (or potential employer)?
- When should you speak with your employer (or potential employer)?
- Who should you involve in the conversation?
- How should you follow-up on your request?
- What are your rights if things go wrong?