Name: Linda Duffy
Home city/ country: San Antonio, Texas/USA
Current Occupation: (student, current job, etc.): I had a wonderful career as a special education teacher. After 35 years I retired and 11 months later I was diagnosed with ALS, which has no cure. It is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord which causes your muscles to die. Two years in I can no longer talk, eat (I have a feeding tube), use my arms or hands and l can’t walk. In time I will no longer be able to breathe on my own. Fortunately I can still move my legs and feet enough to type with my toes and a track ball, which is how I typed this. Most people die within two to five years after diagnosis and it affects individuals in their 20’s on up.
My new focus is to be grateful for the time I have left on this earth and share the lessons I have learned as my body fails me and I have to simplify my life. The one thing ALS does not rob you of is your ability to think.
Unfortunately, my retired husband has a new full time job taking care of me. I really hate that this disease has robbed him of so much of his time but he really meant “in sickness and in health”.
****Something to ponder: Life can change in an instant! Prioritize what is truly important to you. When looking for love you may think the love of your life has to meet certain predetermined characteristics but what truly matters is the core of who they truly are…will they be by your side when things get tough. Also be thankful for what your body helps you do, no matter what it looks like, if it moves it is a beautiful machine!
Time I wake up: I used to wake up around 7:00 when I was independent but now I have to wait until my husband gets up. He likes to stay up late and sleep in so we get up mid morning. A small price to pay for the wonderful care my husband blesses me with.
****Something to ponder: If something really bothers you about your significant other or friend, don’t forget to look at the whole package. Is it something you can live with based on all the positive things you get out of the relationship? Keep things in perspective.
First thing I do in the morning: My husband gets me up for my morning routine which is a 2 hour process. It involves him doing following for me:
- Take my Trilogy mask off and put the machine away. (It blows air into my lungs to help me breathe more effectively while I sleep.)
- Gives me 2 large syringes of water and 2 of my morning smoothie. This little boast helps get my digestive system going.
- Change me and put my pants on while I’m laying down.
- Position the sling under me and attach it to the hoist. (This saves his back!)
- Lower me into my electric wheelchair and position me.
- Put on my blouse.
- My teeth brushing routine
- He gives me a 5 minute mini facial.
- Brush my hair…and many other little details!
- Off to the kitchen table for breakfast and medicine, which has to be crushed and dissolved to go into my feeding tube.
****Something to ponder: Could you do this for someone every morning before thinking of yourself?
My typical breakfast: A homemade breakfast smoothie. We tried the canned type formula that was delivered to us but we discovered it had too much sugar in it. This caused me to get lightheaded and shaky and it would zap my energy. It was also causing me to have bad reflux throughout the day.
****Something to ponder: Listen to your body. If you want to feel better then maybe you should stop or cut back on certain things you put in your body.
Here's what my morning commute is like: About 30 seconds! (from the kitchen table to the living room)
I spend most of my day doing: I am very blessed to have a great family and many amazing friends! Monday –Friday I have friends who come to my house to stretch my arms, hands and legs so they don’t atrophy from non use. Now that my ability to communicate without my computer is limited they often just tell me what’s going on with them, which I enjoy listening to. I also have a low tech alphabet card that helps me communicate when I can’t use my computer and toes. My beautiful family also makes it possible for me to have a massage twice a week. This also helps my muscles relax since they are spastic and I sometimes have full body spasms. Sometimes they are isolated and occur only in my legs. They now tend to happen when I’m trying to type or sleep.
I also have friends who come over to visit, water my plants, bring my guys (my 26 year old son moved back in to help) food, to do my nails, bring me communion and pray with me. I am certainly blessed.
****Something to ponder: Surround yourself with friends who are a positive influence and help you grow as a person.
After work or school, I like to: By 3:00, no matter what I did in the morning, l am usually wiped out and need a nap. Then I like to watch the world and local news.
A fun night for me includes: Being with family/friends, writing or listening to music while on Facebook (It keeps me connected.) I also like watching shows like America’s Got Talent and Dancing with the Stars.
Time I go to sleep: Since my husband is a night owl I go to bed between 10pm-2am. It depends on when we have to get up. My bedtime routine takes my husband an hour.
Last thing I do at night: My husband gives me a kiss, puts on my breathing mask and I thank God for all of my blessings and another day of life.
****Something to ponder: When things are tough or hectic take a few minutes to close your eyes, breathe deep and give thanks for the blessings in your life. We often focus on the negative things in our life. Gratitude helps put things in perspective.
My favorite thing to do for fun: Just to enjoy the present! Thankful for what yesterday taught me and what tomorrow will bring.
My biggest fear right now: What this disease will continue to put my family through.
My biggest hope right now: ALS can affect anyone. Nobody knows what causes it and it is a very underfunded disease. It was discovered in 1869 and finally a lot of good progress was made in the research when the ice bucket challenge brought awareness to the disease.
The problem is the money isn’t coming in as it once was. ALS-TDI in Boston (I’m in a study there.) just had to cut back on staff (including a scientist) because of lack of funding. My hope is that people will continue to donate. If they would just give up one new outfit or one meal out and donate that money it would help. A cure may not come in time for me but I don’t want anyone else or their family to have to endure this horrible disease.
****Something to ponder: Would you be willing to give up one thing that cost money and instead donate the money to help stop this disease? https://www.alstdi.org/donate/
Someday I'd like to: Venture out and take a road trip. We had saved to buy an RV but purchased a handicapped accessible van instead. Bathroom issues and the amount of equipment I have to take have kept me from traveling. We need to do it soon!
****Something to ponder: We were frugal and saved for retirement, which has really helped. Don’t put off saving for the future, even if you can only put away a little every month. It comes faster than you think!
The biggest challenge I have overcome so far: When I was first diagnosed I panicked thinking about all of the “stuff” that my husband and sons would have to go through when I died. It was something I had planned to do after I retired because I just wanted to unclutter my life but I had done a long term sub job and hadn’t gotten to it yet. Before long I needed the help of my sisters and mom and I’ve purged a lot.
****Something to ponder: As I’ve gotten older I realized that so many the things I thought I needed just cluttered my life. Clutter in your home just weighs you down. Purging what you don’t need causes a calming effect. Does your clutter weigh you down?
The biggest challenge I hope to overcome: At the age of 59 I can look back and say that the time I spent thinking about self doubt is my biggest regret. I feel I accomplished a lot in my career but even being named the 2001 Texas State Teacher of the Year didn’t ease my self doubt. I wish I would have just enjoyed the journey without so much self doubt.
****Something to ponder: Don't let failure bring on self doubt. Just know it is an inevitable part of life and see it as a learning opportunity.
Being a woman is wonderful because: We have so many opportunities in this country to be successful doing what we are passionate about. I don’t take for granted that there are women who are oppressed.
Being a woman is a challenge because: Advertising gives us a narrow view of what beauty is as we grow up to be women. Images are often unattainable because of digital changes and we can be so critical of ourselves. I’m glad to see that there have been some changes in this area.
****Something to ponder: As a teacher of young children for 35 years I saw the innocence of young girls change over time. They are exposed to so much via the media. It is so important to teach our children to value each other’s differences and let them have opportunities to share things about each other’s lives outside of school. This allows them to go beyond superficial understanding of each other.
What's one thing people don't understand about your culture that you'd like to clarify to the international community? I wish this wasn’t a question that needs to be asked. People should be judged for who they are. There are good and bad people in every culture.
What's your favorite meal or recipe that is a specialty of your culture? There are too many to name. I am not so much hungry for food but I do miss enjoying a meal with others.
If you could ask the Mogul community anything, what would it be? Why can women be so critical of one another? Sometimes we’re our own worst enemies.
I am a Mogul because: Getting ALS allowed me to realize that I enjoy writing. Adversity can help you discover a talent you didn’t know you had.