I have been having occasional bouts of insomnia in recent weeks. While I have been able to keep active with all my activities, including volunteer patient sessions and workout classes, I was concerned that it might affect my health.

I went to see my neurologist for my annual meeting on April 14. He was encouraged as the lesion at C1 had disappeared. He said it was good news as it indicates that I am able to heal. We will schedule another MRI for next year. I told him I had stopped the drug Tecfidera because of increased risks of PML.

I also had several really good volunteer patient sessions and even had the chance to catch up with the Dr. who was my first ray of hope throughout my ordeal, Dr. Silke Cresswell. She was pleased to see me looking so well. She remembered my case very clearly and told me she felt so bad for me as my suffering was acute.

About a week ago I started to notice that the roof of my mouth on my left side was feeling a bit numb. this has progressed to include my lips. And on Thursday evening, I had a small shock under my left eye. This is the potential nightmare with MS — having TN on both sides of the face. I know the routine. The first time I got shocks on the right side of my face, I had a full year before I had excruciating pain. But at least now I know where to turn for help, I know which drugs work and don’t work for me.

I sent a message to my neuro and we’ll be having another visit in October to discuss options. That will give me time to think a bit more about it.

Over time, my life gets smaller and less engaged. And I’m still ambulatory and nobody can even tell I have MS. Each year it gets harder and harder to ask for donations for the MS Walk . You don’t want people to donate out of pity but it is so easy to be forgotten. That’s another post for another day.

The best donations are the regular ones who give every year right away. And some of them send the most beautiful notes, like this one:

“You have our support my dear friend. You are a hero and inspiration to all.

And yesterday I received an unsolicited contribution from a staff member at my old high school. That was extra special. I’m not sure how she found me but it was a pleasant surprise.

This past week we’ve had some warm, summery temperatures. On Friday (two days ago), I put on a summer dress and rode my bike to my new volunteer position. Later on, Daniel took a photo of me with a little bit of a lilac tree we rescued from a house demolition last year and it seems to be doing very well. I love lilacs and look forward to having this tree in the back yard.

Over the past month I have worked on a few little projects. I did six sessions as a volunteer patient at VGH with five neurologists and one neurosurgeon. I was the ‘symptomatic’ patient for cranial nerve exams. One of the instructors was the head of the MS Clinic. I made sure that was on my best behaviour for that! Different instructors take different approaches with me. Some let me tell a lot of my story and others don’t. My favourite of the last batch was Dr. Esma Dilli. She was kind and really smart. She knows a lot about TN and I was really impressed.

I have been fundraising again for the MS Walk for our team, Wahls Warriors. Right now, our team is #1 in Vancouver and I’m #2 individual fundraiser . These things will change closer to the walk but I’m pleased so far. Getting donations every year has its challenges. Most people I ask don’t ever give but if I don’t ask, it won’t happen! Some people give once and never again. The former friends who have dropped out of my life are simply gone. No more donations, emails, phone calls or invitations. Others give consistently every year right away when I ask. I do know that there are so many reasons to give to many different causes, so I do my best not to take it personally.

The MS Society held an official launch for the walk last Tuesday in the heart of downtown Vancouver, and as a top fundraiser for the walk, I was invited to attend. It was nice to be included. I took a few photos of the presentations. When I downloaded them at home, I was really pleased to see my team from last year in the photo on the screen behind the speaker, Stephanie Mosher.

Other than all of these things, the regular activities that consume my time are shopping for food at the farmers market and my local organic stores, Organic Acres and Choices . And along with the shopping for food comes cooking and washing dishes! My daily routines revolve around food and chores around the house.

The sun is shining again! Time to go for a walk.

Well, activity in my life has picked up so much that I’m falling behind in the blog posts. We had our big successful MS Walk this past Sunday. The group that I started and facilitate for the MS Society formed a team and we raised more than the goal of $7,500 that I set in February. The $8,802 means our group will receive $880 for our group activities!

After my speech on March 31 at the WAMS event, Jody Wilson-Raybould offered to join the team. It was so great to have her at the walk too!. One of the photos published by the MS Society shows her and her campaign team member Lea with signs showing support for me! ( You can see all the photos selected by the MS Society to represent the walk here. )

Fortunately, I know one of the volunteer photographers and she sent me a couple of additional shots of our team that I liked. (We had a volunteer take photos for us but I haven’t received them yet.)

We wore aprons as Wahls Warriors have to cook our own food to make sure we can control what we eat. I brought a big wooden spoon as part of my costume. And as a team captain, I got a nice baseball hat, like the one seen below. The woman wearing the hat is Stephanie Mosher, the MS Society staff person in charge corporate relations and of WAMS. She’s a lot of fun and we get along great. And it’s a really nice photo of her.

The event started with a speech from my friend, Sarah Le Huray of team Making Lemonade. And the very end of the event, after the awards were given out, two of our Wahls Warriors crossed the finish line, almost unwitnessed except by me, Daniel and one other man, who cheered these two for their accomplishment of a 5 km walk. Ravina was the very last one and she crossed with her two sons. She told me she wouldn’t have been able to do this a few months ago!

So proud of you, Ravina!

Well done, Wahls Warriors!!!

I started my fundraising for the 2015 MS Walk last month. I am so grateful for the people who contribute year after year. I know that it’s hard for people to be asked every year but I also think it’s important for people to realize or understand that MS doesn’t just go away. It’s with you for the rest of your life. Perhaps by continuing to ask each year some of my donors will understand that we live with this condition every single day.

I have started a self-help group with the support of the MS Society for people interested in learning about The Wahls Protocol , the diet and lifestyle approach to healing autoimmune conditions, developed by the amazing Dr. Terry Wahls . I participated in all three levels of her online “ quickstart programs ” and wanted to share what I’ve learned. Peer support is really helpful to make some of the big changes and the commitment required to be successful.

The money we are raising goes to support so many programs, including our self-help group, as well as education, research and advocacy. With over 100,000 people in Canada with MS, we need to figure out how to prevent and cure the disease.

As of today, I am in first place for online donations in Vancouver, and our team Wahls Warriors is the top-ranked team. I know we won’t stay in first place as there are heavy hitters on Team Elayne, but I hope we will stay in the top five.

If you are interested in supporting any member of our team, you can find us at the MS Walk Wahls Warriors page.

We had a beautiful day for the MS Walk. We took our time doing the longer route and when we got to the finish, most people had left! We missed the announcement of the total raised for the day, $125,000. It was a great success. I finally had a chance to meet Dr. Traboulsee who decided to walk in Vancouver this year.

I didn’t raise as much money this year as I did last year. I decided to give people a break and I only sent out one notice to all the donors from last year and told them I would not ask again. About half of them responded and contributed. My combined total for the last two years is just over $10,000.

Our team had set a modest goal of $6,100 and we surpassed it by a couple of hundred dollars. There were only five of us who did any fundraising, so I’m pleased with that.

A special thanks to all of my generous donors!

Dear Friends,

Another year has passed and again, I am asking for support from you for this year’s MS Walk. The MS Society provides many types of supports to people with MS that are not available in the health care system. In addition, they are involved in significant advocacy for people with MS.

I am fortunate that I am ambulatory, I have a nice home, good food and a loving husband.

I am also fortunate that my disease is relatively slow in its progression. My severe facial pain has been gone now for fourteen months. I get occasional ‘reminders’ that there is something not quite right but I have been able to eat and talk without pain, and that is a blessing. I have numbness and tingling in my hands and feet but I can still walk and manage stairs with no problem.

Others are not so fortunate. Their disease is more aggressive and they live with increasing disability, and often pain. All of us have our own personal stories of tragedy, perseverance and sometimes even triumphs. Through these experiences we learn how important we all are to each other.

Never being one to ask for help, I have now found myself in the position of needing help and being vulnerable. We all know it could happen to any of us at any time. I just didn’t think it would happen to me so soon!

I would be honoured to have your support in the 2014 MS Walk.

The lives of over 100,000 Canadians would be greatly improved if we were able to find the cause and the cure for MS. And we won’t get there without the funds for research.

The link to my secure personal fundraising page can be found here: http://bit.ly/ND00UL

Any support you can provide the cause would be greatly appreciated.

I was asked last month if I would be interested in telling my story in the hopes that we could get some media coverage in Vancouver about the MS Walk on April 28. I didn’t see anything, so it appears that the Vancouver market is a hard one to crack. There were articles in lots of the suburban community papers, but we were unsuccessful getting anything into the Vancouver Courier.

Stephanie Snowden, a recent SFU grad, wrote this article after reading my website and asking me a few questions. I think she did a nice job.

Vancouver Speech Pathologist takes the Reins against MS

VANCOUVER – On November 15, 2012, Jennifer Sweeney – who worked as a speech-language pathologist in Vancouver– was officially diagnosed with multiple sclerosis (MS) after suffering for years with undiagnosed physical problems and pain. Dissatisfied with sitting in the patients’ chair, Sweeney has taken her unique knowledge and experience to encourage the fight against MS by leading a team in critical fundraising efforts.

Like many Canadians impacted with MS, Sweeney’s diagnosis was a long and frustrating experience. “I don’t know if you can imagine how hard it was for me to sit in a third neurologist’s office as he told me that I didn’t have MS,” said Sweeney, “having studied the brain and worked with people who have had strokes and brain injuries at G.F. Strong Rehab Centre, I was able to identify some of the classic lesions seen in MS easily [after viewing the first MRI].” When doctors were finally able to establish the cause of her symptoms, Sweeney states she was grateful, as it gave her answers to physical problems that persistently affected her.

Though only recently being diagnosed with MS, Sweeney is an advocate for finding ways to end the disease, supporting others to understand and cope with the chronic and sometimes disabling disease. Currently, she is leading one of the top fundraising teams, “Kits Kruisers”, in the 2013 Scotiabank MS Walk in Vancouver.  The Kitsilano MS Self Help group set an initial goal to raise $6,000 to support the work of the MS Society, but has since surpassed their objective by more than 100%, generating over $15,000 in donations and pledges to be used for research and support programs.

“For me personally, I wanted to participate in the Walk and do all I could to raise money to thank the MS Society for being there for me when I needed them,” says Sweeney, “I suffered a lot before being diagnosed and it helped to have access to the support group and the educational sessions hosted by the MS Society.” The 2013 Scotiabank Vancouver Walk will occur on April 28 ^th at Ceperley Park in Stanley Park. This year’s goal is to raise $1.2 million in BC and the Yukon to support the MS Society of Canada’s mission to be a leader in finding a cure for MS.

When we first started talking about the MS Walk in February, I asked the group how much they managed to bring in last year. It was about $5,000. So, I encouraged them to raise the goal and see. So, we decided we would try to raise $6,000.

Yesterday afternoon, our group passed $12,000, double our original goal. I am so proud of everyone for digging deep and working for it. It’s hard to ask people for money, especially when you have a mysterious disability. And MS is scary.

As of 10:00 this morning, for online contributions, our team is #2 in Vancouver. I am #3 of individual fundraisers, nearing $6,000.

You can help me reach $6,000 by making a donation. I only have $222 to go. My personal fundraising page can be found here.

Daniel met Tom Browne when Tom was doing his Ph.D. in mechanical engineering. at McGill. (Daniel’s Ph.D. is also in mech eng from Sherbrooke University.) They worked for the same research institute, Tom at the head office in Montreal, Daniel in the educational branch in Vancouver. Over the years they became friends. And when Daniel and I met, visits with Tom were part of his business trips out here. Whenever Daniel went to Montreal on business, visits to Tom and Mary were part of the routine. Mary and I didn’t travel back and forth as much, but we did get a chance to meet a few times.

When I sent out my first e-mail to ask for contributions, it was also an opportunity for me to tell people what was happening in our lives. I included Tom in the group mailing somewhat reluctantly as we knew that Mary was involved in her own battle with cancer. I was surprised and choked up with the response — a touching note and the largest donation I’ve received to date. It galvanized me and Tom encouraged me to raise my goal and keep on.

This week I asked Tom if he would be willing to write about why he donated to my campaign. He obliged and sent photos too.

Yes, life can be a challenge. I guess in our case we’ve had 32 years together, and have raised two smart kids and watched them grow up and not need us much anymore. We figured we’d have two or three more decades together, filled with travel to Tuscany or Bali, playing with grandchildren and lots of other great adventures, and the unspoken arrangement was that one of us was going to get sick first and the other one would be there as support. When Mary was diagnosed with cancer last summer, we were shocked because we just didn’t expect it to happen quite so soon.

There has been lots to work through. It is easy to blame the other, whether you are the person suffering (he/she doesn’t understand what I’m going through) or the other (he/she is always whining, what a pain). In reality the partnership is just that, a partnership, and trust and understanding on both sides is essential. Mary tries not to feel guilty about needing help, and I do my best not to get frustrated at her condition which isn’t really her fault, anyway. I agreed to be there in cases like this, which certainly seemed unlikely at the time, and in any case, if the roles were reversed, I know she would be there for me.

In times like this, focus becomes critical. I recall, a number of years ago, being solicited by a business acquaintance to support his cancer run in memory of his Mom and when I looked down the list of previous donors, there was a large number of $25 to $50 donations, and one from a mutual friend for $500. I decided from then on to focus and to provide large cheques to charities, but only in a small targeted range, precisely because a big donation can encourage others to think big. Most professionals can afford $500 (even if they don’t think they can) and most will get a decent tax break, and I know I can drop that much in a single trip to the Mountain Equipment Coop to get new riding gear, a bicycle chain and some brake pads in the spring.

So when I heard that Jennifer and Daniel were facing similar life-changing events, I figured the least I could do was support the charity, especially given that I can’t exactly drop by with a pan of brownies to cheer them up. (We are 3 time zones away, in Montreal).

Meanwhile there have been highlights: our daughter’s marriage in August 2012, followed by her pregnancy (due date mid-June 2013). My Dad’s 90th birthday is coming up in May. Each day brings joy at being alive, with close friends and family joining us regularly for meals and special occasions. We take it a day at a time.

Thanks Tom and Mary. We are blessed to have friends like you.

I met Stephen Hammond through the Vancouver chapter of the Canadian Association of Professional Speakers (CAPS). I joined because I wanted to learn how to communicate issues related to aphasia and my work as founder of the BC Aphasia Centre. I learned so much there from our guest speakers and other members. During that time, I led the organization I founded to transfer assets to a larger organization to continue the work. But I stayed involved with CAPS on the board and made plans to try to develop a new specialty area. Stephen was President of our chapter during my first year as treasurer.

Stephen is a former lawyer who in now a speaker, author, educator and trainer in workplace and community human rights. Over the years, Stephen and I have remained friends. We have a common interest in politics, and his mother was an MLA in Manitoba. Stephen and his husband Jack have been generous with us, inviting us to interesting social events. And every time I ask for a donation for something, they are there to support me. They are usually among the very first to step up. It means a lot to me to have that unquestioning support.

During my time at CAPS, I became known as a networker and informally coached a couple of colleagues on the art of networking. It served me well as I have a very good memory for faces and names. I pray that the MS doesn’t take that away from me.

In 2009, I helped Stephen get a chance to meet up with his old professor from Osgoode Hall, the former UN High Commissioner for Human Rights, Louise Arbour.

He wrote a nice blurb about it on his blog.

On Monday night at the University Women’s Club in Vancouver, I was lucky enough to get a ticket to a sold-out speech given by Louise Arbour, thanks to my friend and networking maven, Jennifer Sweeney. Anyone who knows me, knows how much of a fan I am of Ms. Arbour. I’ve talked about this uber-talented and brilliant woman, since she taught me Criminal Law at Osgoode Hall Law School years ago.

As I look at this photo and read the blog, I find myself missing that person who could ‘work a room’ and figure out who should meet whom. That was my favourite thing to do, to help people connect with each other as my way of helping. Exactly one year later, my serious facial pain started and I haven’t been the same since. But since my surgery (balloon compression rhizotomy of the right trigeminal nerve) almost four months ago, I am starting to come back . . . stay tuned.

My personal fundraising page can be found here.

Thanks Stephen and Jack for believing in me.