MS Madness! A "Giggle More, Cry Less" Story of Multiple Sclerosis Book Review

 MS Madness!  A "Giggle More, Cry Less" Story of Multiple Sclerosis by Yvonne deSousa is exactly what it promises. Lots of laughs! Whether you have MS or not, this book is extremely enjoyable and explains the crazy, bizarre symptoms that can happen with MS and makes you laugh all the way. 

Yvonne was diagnosed in 2009 with Relapse Remitting MS and since then has made it her mission to laugh at MS and make others laugh along with her. She has had me laughing long before her book came out, as she blogs at http://yvonnedesousa.com about her journey with MS.

This book is definitely one I would recommended. Before being diagnosed we all have had symptoms we ignored, and then there were the ones we had that we could not ignore that led us to our diagnosis. 

In the book Yvonne talks about working full time as a receptionist in a medical office. As time went on, and changes were made within the office and Yvonne's symptoms increased, she realized she could not continue working. I am sure it was a difficult decision as she had worked there for many years, but it seems it was the right choice. Stress can intensify symptoms, and it certainly did for Yvonne.

Like all of us, we need to figure out what works for us post MS diagnosis, and figure out what adjustments we need to make to our lives. One of the most common symptoms, which Yvonne and I share, is fatigue. Yvonne talks about her learning experience and what changes she had to make with the many symptoms she was experiencing. Yvonne has many funny stories about her "brain fog" or "cog fog" and an amusing tale about buying a much more expensive computer than planned while on "legal speed." An incident that I can relate to is when Yvonne had a friend visit. It was a tradition for them to go the same restaurant.  Being the summer on Cape Cod, the restaurant was very busy and Yvonne started to get a headache from the loud and crowded restaurant. I have come to realize places I also need to avoid and when I can and can't participate in outings with friends.

I am lucky to call Yvonne my friend, and we once met. (Yes, only once even though we live in the same state!) Once a month I go to a local support group and quite a few years ago one of the leaders asked if she could give Yvonne my email address as she knew we both had a passion for writing and raising MS awareness.  Our friendship bloomed from there.  I am sure we will someday meet again! But, the mean time we encourage and support each other through emails and Facebook. Yvonne has been an inspiration to me and I am sure after reading her book, she will become one to you too! And you will be thankful to be able to laugh at MS too!

P.S. If you would like to buy Yvonne's book here are a few links where to buy it and you can feel good about this purchase as a portion of the proceeds of each book goes to agencies helping people with chronic illness.

Amazon

Barnes and Noble

Abe Books

"When I Walk"

 "When I Walk" by Jason DaSilva is a film I first saw last summer at the Museum of Fine Arts in Boston with Abe. It premiered at the 2013 Sundance film festival and later that year had its theatrical release. It now will be aired on PBS tomorrow, Monday, June 23rd.

 

Jason DaSilva is a film maker and after being diagnosed with primary-progressive MS, he decided to document his journey.  Jason was 25 years old when he received his diagnosis and like all of us MSers had our lives turned upside down.  Jason has a lot of challenges and his condition gets worse as he goes from walking, to needing a cane, a wheelchair and now a scooter.  Along the way, Jason meets Alice and they fall in love and get married in 2010. They now have a son, Jase. Alice becomes Jason's caretaker as well, and at times that is difficult. Not only does she help him with everyday tasks, but she also helps him with this film. (And now being a mother and Jason's caretaker.. I don't know how she does it! Kudos to Alice!!) Check out the website at http://wheniwalk.com.

 

During Jason's filmmaking, he came up with a great idea for an app called AXS Map (pronounced access map) where everyday people can post places from restaurants to stores that are truly handicap accessible. Getting around on public transportation is extremely difficult if you are not able to walk, which you will truly understand once you see this film. Often when people with walking aids like a wheelchair finally get to their destination they find there are few steps, and therefore not handicap accessible. How frustrating after a maybe 2-3 hour commute that would take a mobile person 30 minutes!! AXS Map will help those who still want to go out find places that they are accessible. Find out more about this incredible project at http://wheniwalk.com/axs-map.

 

In the last Momentum MS Magazine, Jason DaSilva was featured. Read his story here and more about the film. http://www.momentummagazineonline.com/reel-life-ms/

 

The film premiers on television tomorrow, Monday, June 23rd.

Locally, it airs at 10pm, but here is the link to find out exactly what time it will be aired in your area. http://www.pbs.org/pov/wheniwalk/

 

This is a powerful film and I urge you to watch. Share with your friends and family so they can watch too and learn more about what it really means to have MS. Jason has spread MS Awareness and continues to do so. He has really become an activist for all of us MSers and I could not be prouder!

 

Now let the rest of us help spread MS Awareness too!

 

 

 

Bean's Spring Update

It's been a while since I've made a post. I haven't been feeling the best as I have been getting a lot of headaches and fatigue. While working a full time job, these aren't the easiest symptoms to deal with. I have a hard time falling asleep and started a new medication to help me sleep through the night. The periodontal office where I work has been going through renovations and keeping the office open during the renovations has been challenging at times. Also, I have been having asthma issues (my inhalers are no longer working) and I am scheduled for testing next week to try to figure out what's going on with me. (Look forward to the next post to find out!)

The past few months have also been busy as I am spending time with my sister and my new niece, Melanie. Melanie was born premature on February 7th (my anniversary with Abe!) but now is growing fast and becoming stronger and stronger every day! I visit my sister, her husband and Melanie on the weekends and help out any way I can. I have been enjoying seeing Melanie grow and her developments. She now smiles and I look forward to hear her giggle!


In April I participated in Boston's Walk MS for the 6th year. Walk MS is such a fantastic event and I am proud to say I raised $3,673 and in total Team Kaliope raised $4,353!  It always is amazing to see the amount of people who come together to find a cure for MS. The Boston walk was in a new location this year, and we walked 3.5 miles down Commonwealth Avenue by Boston University and looped around the Charles River for a bit before walking back up Commonwealth Avenue to the BU Indoor Track and Tennis Center. This year Team Kaliope was a little smaller, as I mentioned in my  that my sister had a baby so she and her family were not able to walk with us this year. I am now looking forward to next year's walk more than ever knowing my adorable little niece will be with us!

In May I had another JC virus test since I am on Tysabri, a monthly infusion, for my MS. I am thrilled that it came back negative! It is such a relief because Tysabri has been working so well for me, and if the test came back positive I am not sure I would continue on it. In comparison to other MSers, I know I have it pretty good. I thank Tysabri for that. July10, 2008 was my first Tysabri infusion, and am thankful I have been on this medication for almost 6 years! Next month will also be my 8th MS anniversary.

Regardless what is going on with MS, I just take one look at Melanie and all my problems just fall away! She has become one of the most important people in my life and my MS will not stop me from being the auntie she can count on!

Walk MS 2014

On Sunday, April 6th I will be participating in Boston's Walk MS for the 6th year leading Team Kaliope. This year the walk is 3.5 miles and in a new location, the Boston University campus. I am very excited to see the new route for the walk! The first year I participated in Walk MS in 2009, I didn't know what to expect. When I entered the Harvard Stadium I was overwhelmed by the sight of thousands of people. We were all there for the same reason and I was overcome with emotion. Each year the sight of so many people still effects me, and I am so proud to  be a part of such a special day!

Every year Abe and my sister, Annie have walked by my side to help encourage me. This year my sister will not be able to walk with Team Kaliope as she had a baby last month. Melanie was born pre-mature on February 7, 2014 at 3.2 pounds. I will miss having Annie by my side, but find this year is more important than ever to walk and fundraise as I never want Melanie or anyone else hear that there is no cure for MS!

In order to end MS we need to do it together! If you are able to help me achieve my fundraising goals, please go here to get to my secure personal page to make a donation of any amount. Every dollar counts!

This year I am hoping for nice, warm weather as Boston desperately would like spring to arrive. I have met many people along my journey and it is always so nice to see so many familiar faces at the walk and to have a friend walk with me. I always document the event with many photos to help remember the great time. I will be sure to blog about the event and share some of those photos with you!

Walk MS is really a special event, and if you haven't participated before, I suggest you check your local National MS Society chapter. Walks take place all over! I hope you will find the walk just as magical as me!

 

MS Warrior: An Interview with Lori Grande



Lori Grande hosted the Fashion Plates event I attended in November 2013. She is a strong and funny woman and I wanted to learn more about her. Lori Grande is the co-host of the Boston morning show "JW and Lori in the Morning" on Country 102.5FM. I reached out to her and she was so receptive to the idea of an interview.

 

1. When were you diagnosed with MS?

I was diagnosed with MS 6 years ago. I had visited a friend of mine in London. When I came back I noticed my feet were very cold and tingly like they were asleep. I soaked them in hot water, rubbed them, and put on extra socks. Nothing worked.. so I went to the doctors and she was smart enough to send me to a neurologist. Then the many, many tests began. After I was diagnosed I remembered periods of weakness in my legs and times I was unable to walk for a few minutes. All those things started making sense.

 

2. What was your initial reaction to your diagnosis?

My initial reaction was total fear. I just thought, "I don't want this!" I wanted it not to be true. I spent the weekend alone on the computer reading stories about people in wheelchairs and using canes. I thought well I will be in a wheelchair next year. I had no conception of what the diagnosis actually meant. Now, I wish I could pass along to other women and men that you can live a happy, healthy, productive life WITH MS.
 

3. How did your diagnosis effect your job, if any?

I have been very lucky to have had long periods of time without any problems. I did not tell anyone at work. I was scared to death.. afraid I would lose my job. In fact when I had told my boss that I would be hosting the Fashion Plates Luncheon and that all the models had MS, he "Can any of them walk?" So, with that kind of response, I knew I wouldn't be telling him anytime soon. But, now that I have several healthy years under my belt, I had no problem telling him recently. He was wonderful about it. And I know I educated him. After one MRI, a couple years ago, the doctor found some new lesions. So I had to go in for steroid infusions for a couple days. Well, I worked the morning show, went for the infusions and then hosted a Country night at a restaurant. So luckily it all has gone very smoothly.
 

4. What is something positive MS has brought to your life?

I have met some of the most wonderful people in the world. People I most likely would not have met otherwise. At one point a few years ago, I was at a brunch at Piper McNeely's house talking with several lovely women...and I thought Wow, I am exactly where I belong. It made me feel so good.
 



5. How do you manage your MS?

Now that I understand MS... I try not to get overtired or overheated. For instance, I won't go for a walk in the middle of the day in the high heat. I also take vitamin D every day. I make sure I never miss a doctor's appointment or MRI. I inject Copaxone once a day.
 

6. How did you get involved with Fashion Plates?

It was serendipitous!!! Anthony Edwards had a conflict and was unable to do it so someone asked Candy O'Terry from Magic [106.7 FM]. She couldn't do it and asked ME! No one knew I had MS.. I thought.. How perfect that I would be involved with this particular luncheon. And of course the women are so wonderful, kind, and inspirational. And I was able to see all these beautiful ladies who were living healthy lives with "my" disease.
 

7. Are you involved with any other MS fundraisers?

I was lucky enough to do the MS ride on Martha's Vineyard a couple years ago. I trained for it by increasing the length of my rides leading up to it. When I finished.. I must say.. it was the best moment of my life. Better than the day I got married.. Better than the day I got divorced. I never would have thought I could do that. And here I was doing it WITH MS. I will never forget that day.. and hope to do the ride again. I also have hosted the Climb to the Top at the Hancock tower for the past couple years. Another inspirational day.. especially seeing firefighters in full gear making the climb. Just this past winter I took part in an event to raise money for the MS Society at a store in the Natick Mall called Vineyard Vines. We had a band and a bar.. and the store donated a portion of the money people spent on clothes that day.
 

8. Do you ever talk about your MS on your morning show?

I have not talked about it on the air. But I have mentioned the luncheon and the inspirational women that take part in it. My partner JW knows I have it. I have not "come out" yet on the air. I don't want to make my work with the MS society all about me. But I very interested in doing more with them and hopefully educating people about MS. The message I would like to get across to people recently diagnosed is that you don't need to be so fearful. You can live a happy healthy life. There are so many fantastic medications available to people now. And that is because of all the amazing work that people have done at the MS society.

 

Winter Asthma Blues

It's definitely the middle of winter here in Boston. The weather has been extremely cold (sad to say the mid-west has had it even worse) and  we have had a few snow storms. Really, there is a few more months of winter left, and I am not looking forward to it.



 In addition to MS, I also have asthma, which usually doesn't bother me at all. I was diagnosed with asthma when I was around 12. Last week, out of nowhere, I could hardly breathe. Something similar had happened last winter and I went on steroids.  It was Monday night and I was very worried and considered going to the ER, but really didn't want to. From last winter I had a few prednisone pills left and decided to take one as they had not yet expired. I didn't know if I should or shouldn't but decided that I was going to! (You shouldn't really do this, and I don't advise anyone does take leftover pills without a doctor's permission). But, I think it was the right thing to do, and was 90% sure when I went to the doctor, this is what I would be prescribed.

And I was right! I got an appointment with a doctor the next day and started on prednisone. For any of you that have been on steroids before, you know how unpleasant they are. The side effects are rough. I am very sleepy, but have trouble sleeping. It also makes me feel hungry all the time, but changes my taste buds, so I can't really taste the food well. I have now finished tapering off the prednisone, but still have the side effects as it is still in my system. I can't wait for it be out of me! I want to taste food and I want to be able to get some real sleep! It is very difficult going through all of these effects while working full time. I have been exhausted lately and haven't really wanted to do much of anything.

A concern about being on prednisone is that I am also on Tysabri, and there is contradiction to being on both medications. I contacted my neurologist and he said I would be fine to have my infusion next week. I was relieved because I don't want anything coming between me and my Tysabri! I think because the prednisone was such a low dose is why it is ok to keep the infusion, and because by the time my appointment rolls around, the steroids will be out of my system.

The problem though, is that I am still not feeling like I am breathing as normal and my heart rate is elevated. I thought by now the steroids would kick this "thing" out of my system. I am feeling better, that is for sure, but not 100%. I am going to wait until Monday and see how things are going and based on that contact my doctor. It may just be that one of my inhalers need to be changed... or something else all together!!  It seems like with MS, and now asthma, it's always something! Do any of you feel that way... you can't catch a break?! At least this weekend the weather is warming up and I am planning to try to enjoy every moment of that!

 

Fashion Plates

Fashion Plates is a fundraiser for the Greater New England National MS Society, which was held November 8th at the Sheraton Boston. I was fortunate to be invited to this wonderful event by the National MS Society.  All of the women at my table were invited for their participation in Walk MS and the Challenge Walk.


The day started with a reception where wine and mimosas were offered. There was a photo collage on display from last year's event and wonderful raffle prizes, 9 in total.  There was a sports gift basket with a football autographed by the Patriots, game tickets, memorabilia and equipment, a gift basket of $1000 worth of scratch tickets, an indulgence basket with spa treatments and a gift basket offering Lasik surgery, by the office I go to for my eye care, which I thought was extremely generous. I entered once for the indulgences gift basket and two entries for the scratch tickets twice, but didn't win. I was hoping I could write a blog about becoming a millionaire instead! ;)

The event was hosted by Lori Grande, co-host of  the "JW and Lori in the Morning” show on Country 102.5. Lori herself has MS and told us how much she enjoyed hosting the event in years past and was glad to be back.  We were served a delicious corn chowder soup, quiche and a green bean salad for lunch and a decadent chocolate banana torte for dessert. At each table setting was a party favor of pink cookie in the shape of a dress. It was adorable and delicious!



There were three parts to the fashion show and each model participated in all three sections with three different outfits and hairstyles. All of the models have MS and have amazing stories which was shared with us as they walked the runway. The models were also of all ages and progressions, which was great to see. The fashion show featured clothing lines from Ports & Co., a store in Cohasset, MA. They have beautiful clothes for everyday and special occasions.

The ballroom was filled with more than 600 people, all supporting MS research and finding a cure. It was a very special event, I am so glad I joined for this event! It is a day I will never forget!