An interview with Lotti Sand on Living with Parkinson’s on July 10, 2023 by George Ackerman, Ph.D, J.D.
Biography
I trained at the teacher training college 29 years ago. I have worked as an after-school teacher since then. This means that what the class teachers teach theoretically,
I teach them practically. We receive the students before the start of school if they need care and after, when the parents need to work. We are open from 06.00 – 18.00 every weekday.
I studied to be a massage therapist at the same time when I was in college. I have also had my own massage business. From there, I know a lot about how the body, muscles & cells work.
Please tell me a little about your background.
When I think back, the disease started creeping up much earlier than I knew about the disease.
I lived in Stockholm and had strange symptoms. I walked in my sleep, had small epileptic fits, saw black shadows in the corners of my eyes, etc. It was when I was working, and my daughter was little. Contacted a neurologist but never really got clarity on what was wrong with me. The stress was at its peak and far too little sleep.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
We moved from Stockholm, and it was calmer for a while anyway. We moved too short. Stockholm is growing and so is the small town of Mariefred. I work as a teacher and all moving in affects the number of students at the school and in each class.
My Story
I started to notice the symptoms again when the stress increases. What becomes decisive is the accident at work I slip while playing with the students in 2016. I do not get help from the health care because they consider me healthy because I can walk, exercise, and take care of my dog.
I’m struggling and in constant excruciating pain. I can handle arguing with the healthcare system in batches. Finally, I got a new doctor. He prescribed strong painkillers. Suddenly, I was able to move and did so with confidence.
My husband ended up carrying me into the ER, I couldn’t walk or talk I was like a package, I had probably drained all the dopamine I had left. But it would take another few months before I was diagnosed. When it was established that I had it, the doctors said here is our phone number you will have so many questions that you can contact us at any time and then they said goodbye and left.
My whole life was turned upside down. When I got home, I started googling. I didn’t get much “tools” with me on how to learn to live with the disease. It wasn’t just Parkinson’s, it was the hip too, but it couldn’t hurt, it must be the disease, eat more dopamine and you’ll be fine, the doctors thought.
I contacted people who had lived with the disease for a long time and learned from them. The advice I got was: Eliminate as much stress as you can.
Sleep is very important.
The diet
Routines
Alarm on the medicine so it is not forgotten.
Clean out the “backpack”, tidy up and get ready with everything in your life.
It was good advice, but since I have a hard time just accepting that I will only get worse, I looked for cause, effect and tried to figure out how I could influence the disease myself. One thing I have reflected on is those I have meet have all had difficulty emptying their bowels, everyone including myself is very hard in the stomach.
What I have done/am doing is: Avoids stress, learned to breathe correctly, yoga, cold shower for 2 minutes every morning, dances, orienteering, , strength training back and stomach especially, looked over my sugar intake, keeps my stomach in shape so I can empty my bowels, eats anti-inflammatory diet as much as possible, activities, yoga, eat certain supplements, make my own Kombucha, make sure I have contact with the Vagus nerve.
When I work, my day looks like this:
Wake up : 5.30
Yoga
Cold shower 2 min
Breakfast
Goes to work at 7.30
Morning Coffee
8.00 – 16.30 at work has regular breaks
17.00
Dinner
21.00 Go to bed.
Fix a bit at home after resting, working out or doing yoga. The most important thing is to listen to the body and what it needs. February 2023, I slipped again, felt it was just like the first injury.
This time I refused to go home before the x-ray was done. Since at the first injury I notified pretty much everyone involved, I suddenly got time for an X-ray. It turned out that the right side was two of the tendons of the hamstring muscle about to come loose. When the orthopedist came and said – It’s your old injury that has flared up, I looked at him and said – Yes, I’ve been injured!!!!! He was ashamed.
Now these months I have been able to train and rest to get better in my leg. What I discovered was that when it hurts the most, it strangles the nerve on the right side and my “Parkinson symptoms” get worse. When the pain goes away, I can walk normally, because it is the nerve that is affected.
What I miss in healthcare is that they often only look at a symptom and treat it. I wish they would go through one’s whole life situation before pumping in meds. Of course, there must be medication, but there can be so much more to the bottom line. I was about to have DBS brain surgery because I was so bad before I changed my life. From eating about 14 tablets/day and was about to eat more, some days I currently take 6 tablets, on quiet weekends 4 tablets. There is little difference. I am glad to have found so many helpful people with Parkinson to help me along the way. My goal is to be able to work and feel as well as possible even though I have a disease in me. But the dream is to be able to rewire the brain signals yourself without the DBS operation. We’ll see if I succeed.
My dad said when I was a child. I hope you get to use your stubbornness one day. It drives me crazy how stubborn you are. I guess that`s my saving grace and that I have a positive attitude.
How has Parkinson’s affected your daily life?
I have always tried to find answers or solutions to everything. I love my work with the students because they still have an open mind. I always say – never stop asking questions. Those who ask the most questions are usually the wisest. I have a hard time accepting things before I’ve tried them. My stubbornness I suppose.
How can someone get in touch?
I use Instagram @ Parkingson.mitt.i.livet
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Every new day is a new opportunity to change your life.