Life with MS

We spoke with Manoj and Annie Joseph, the husband and wife co-leaders of the Our Lives With MS Social Group. Manoj, who was diagnosed in February 1998, and Annie started the group in 2015.

About MS

When were you diagnosed with MS?
M - February 1998

What did the MS diagnosis mean for you?
M - At first I did not know the seriousness of the diagnosis because I didn’t know about MS at all. After searching the internet for answers, I realized my life would never be the same again.

What lifestyle changes did you make, if any?
M - At first I didn’t make any changes. Then eight years after my diagnosis I was left no choice but to retire from my position at the New Rochelle Police Department.

What would you say was your biggest obstacle and how did you overcome it?
M - As my symptoms worsened, my morale started to decrease. I tried to get involved with more church and community events.

Tell me something about yourself that people might not readily know. 
M - I was raised by my grandparents in the small town called Chengannur, which is in Kerala, India.
 

The Support Group

What is the name of your support group?
A - Our Lives with MS

Why did you choose that name?
A - We chose this name because we wanted to include everyone who is affected by MS, which includes those who have MS, their family members, caretakers, and friends. This is why Manoj and I co-lead this group. It’s good that we both have a different way of looking at MS.

When did you start the support group?
A - Our first meeting was on June 6, 2015

Why did you start the support group?
A - We have been to many different groups over the years, both in Florida and New York, and have experienced some good groups and some not so positive groups. When we realized that there was not an active group in our area, we thought it would be an awesome opportunity to start a positive and empowering group to be a part of and help others in the process. It is very important to have a support system. That system can include caretakers, family, and friends. Sometimes we also need the support of others who understand what we are going through. That is when having a support group in the area is needed. Our group provides that support to the MSers, their caretakers, family and friends, but in a social environment.

How many members does the group have?
A - We have about 40 members, which includes MSers, their caretakers and/or family.

How many members did the group start with?
A - The group started with 10 members.

Does each meeting follow a planned itinerary, or is each one different?
A - Each of our meetings is different. We are a more social group, but we also have educational meetings as well. Our meetings vary in topic and activity. We have had guest speakers who discuss MS in general, symptom management, diet, physical therapy, exercise, and SSDI. Our more social activities include game days, coloring and music therapy, casino trips, food drives, holiday crafts, which we then hand out to the residents of Royal Palm Beach Health and Rehabilitation Center during annual our holiday visit.

What is the most fun, or memorable, activity that you’ve done with the group?
A - Our most memorable activity was our first holiday visit to the Royal Palm Beach Health and Rehabilitation Center. We came up with the idea do something in the community during the holidays. Manoj had spent more than a month in a rehab center in NY after his last major relapse. It was an eye-opening and humbling experience. Most of the residents never had visitors while I was with Manoj every day. We decided to walk around and talk to other residents. It made us feel so good to see the smiles on their faces. We thought as a group, if we could do the same thing it would make the group feel good as well. We brought the crafts and cards we had made during our meeting the month before and handed it out to the residents. The most memorable moment for us was when we saw a resident hold the card and ornament we made close to her chest. It was as if she had never received a gift before. That day itself we decided we would make a visit at least once a year.

How has the group affected your personal lives?
A - Manoj and I love running the group. Yes, it has kept us busy, but it has been even more rewarding. We have made some good friends and met many wonderful people. They have all touched our lives in some positive way or another.

What would you say most motivates you to do what you do?
A - In the beginning, we were looking to be a part of a positive group. As we saw the group grow, our motivation became to help the group in whatever way possible. Now, the group motivates us. We see how much it has helped us all to have this support system around us.
 

Advice

What would you say to someone who has recently been diagnosed with MS?
M - You may have MS, but don’t let MS have you. When I was diagnosed there were only a few treatment options available. Today there are over 15 options. We must take medications to stop or reduce the progression of MS. Don’t let the MS stop you, you have to live your life.

What would you say to someone who is currently struggling with their MS?
M - You need to have a good support system. You may be having a bad day but there will be better days ahead. Don’t give up, take the medicines, have a proper diet, and move around as much as you can.

How do you handle the responsibilities and everything that there is to do for the group?
M - Annie and I do this together. To be honest, she does most of it, but I’m always there to help her. We try to plan out events and topics ahead of time. It’s easier if you get things done right away so you don’t fall behind. It does happen sometimes, since there are so many other things happening around us.

What advice would you give to someone who wants to start a support group?
A - Starting a group can be one of the most rewarding things you do, but it’s not easy. Find someone who can help you to co-lead the group. Having two people run the group together will help keep you more focused and organized.

What do you think it takes to be a support group leader? Why?
A - It takes time and dedication to be a support group leader. Also, you have to have a lot of positive energy and patience. Take the time to go to MS events around you. Knowing people helps a lot when it comes to planning meetings and programs. Also, this is how you can meet new people to invite to your group.

What would you say if someone said to you that they couldn't do what you do?
A - Sure you can, just take the time to plan ahead and organize. If you have any questions or need any help, just contact MS Focus. Manoj and I had many questions in the beginning but after the first few months it got easier. We are also here to help you in whatever way possible.

Anything else you would like to add?
A - The group is not successful because of Manoj and me alone, it’s successful because we run it together as a group. We try to take everyone’s suggestions and ideas and plan our meetings and programs around those suggestions. We are truly blessed to have such and positive and friendly group.