Iris' Story part 2: What I learned from Mimi S

Iris L.

That would be Mimi Steffen, an emeritus member. Mimi was one of the first members I met on the board. She was in her 80s and had a diagnosis of Alzheimer's Disease. She was also a myasthenia Gravis patient. Mimi gave us hope. She wore a bracelet, "A Reason for Hope" and she sent me one. In those days, there was no hope for PWDs. The thinking was, your life was over. Just let nature take its course. Give up. Mimi gave us motivation for living. She gave us motivation to take charge of our lives, as best we could. She was a role model for us, because she lived what she told us.

Mimi believed in independent living, we do not have to move in with relatives. Mimi lived on her own for many years in a town in Pennsylvania. She wrote two books after having dementia. She was interviewed for a PBS program about living with dementia. Mimi vigorously promoted Best Practices as a way to improve functioning and to prolong the early stages. Mimi promoted socialization in small groups or one-on-one. Mimi encouraged vigouous exercise. Mimi encouraged learning about Alzheimer's Disease, especially the diagnostic process. She wanted us to read the book, The Alzheimer's Action Plan, by Gwyther and Doraiswamy. Mimi encouraged getting involved with the local Alzheimer's Association chapter, also getting involved in a clinical trial if possible. Every April there was an Alzheimer's Association convention in Washington, D.C., and Mimi encouraged members to visit their state's representatives to advocate for more funding for research for Alzheimer's Disease.

Mimi believed in making use of the memory medications, if tolerated. She also gave guidelines as to when to stop medications. At a certain point, she planned to stop all medications and interventions. Mimi had children but didn't want to live with them. With the help of her son, she investigated assisted living facilities close to where her son lived in Colorado, and made plans to move there when the time came. She was proactive and made her wishes known. Mimi was one of the main persons who motivated me to fight for my life and to change my perspective on having memory loss when I was in a deep depression. If you Google search her name, Mimi Steffen, you can read her own words at the PA General Assembly.

Iris

concerned_sister

I think I'd like that. I am grateful for you and others that pay it forward.

Larrytherunner

Iris, I don't understand. As a physician you know that chronic inflammation is a main driver in the aging process. Alzheimer's, heart disease, kidney disease, many other medical conditions increase in severity with chronic inflammation. Every week I read about research on how the immune system drives neuro-inflammation. Montelukast has been proven to inhibit leukotrienes and reduce neuro-inflammation in animal models. It promotes deeper sleep and it is very safe for adults. I have taken it multiple times a day for eight years and the results have been incredible. My extreme mental fatigue disappeared within a week and I have been normal ever since.

The main complaint I get from people is that they can't get a prescription. As a physician, don't you know someone who could write a prescription. I hate to see you suffer unnecessarily because you don't want to try something new.

This reminds me of a urologist at the University of Cape Coast that I met about three years ago. It took me two years before I finally convinced him to treat some of his patients with enlarged prostate with montelukast 10 mg twice a day, of course with their informed consent. He found that it works far better than any drug approved for this condition. He has already started a clinical trial in Navrongo in northern Ghana and it should be registered with clinicaltrials.gov within a few months. My belief is if the science is there and the medication has a proven safety record for adults, why not try it for at least a few weeks. See if you feel a lot better. I sure you will.

I have some new posts on my website

www.montelukast-repurposed.org

Iris L.

Larry, I did ask my neurologist about montelukast years ago, when you first mentioned it in the boards. At the time, he said he was waiting for more studies. You have been posting about current studies. With my lupus treatment, I was on anti-inflammatory medication. The chronic global pain was treated and I believe my memory was stable while I was on the medication.

One of the principles of medical treatment is to try one treatment at a time. My neurologist has indicated that much of my problem is due to poor brain blood flow, from sleep apnea and hypertension in combination. I am working on both.

Frankly, I had forgotten about montelukast. I'll bring it up at my next appointment. I have a lot of things going on now and I don't want to rock the boat.

I'm glad you keep posting about montelukast. We need more options.

Iris

Iris L.

Another thing that I learned from Mimi was about Validation Therapy. People are supposed to validate the PWDs feelings. Validation Therapy was promoted or developed by Naomi Feil, who recently passed away.

Iris

Iris L.

Here is the address of Mimi's obituary.

https://www.rileyville.com/MimiSteffen.html

If you Google "Mimi Steffen" and go down the page, you will see TESTIMONY of Mimi Steffen at PA Assembly. Please read, it is very informative snd inspirational!

Iris

concerned_sister

https://alzconnected.org/discussion/comment/206897#Comment_206897

I read the obit. It sounds like a life well lived. I share her fondness for genealogy.

concerned_sister

I found her contribution to the Maria Shriver book online here:

https://books.google.com/books?id=PhNGy-9utp0C&pg=PT11&lpg=PT11&dq=%22Mimi+Steffen%22&source=bl&ots=E2BxoYQT7t&sig=ACfU3U2U3pG2ORfGD_s-hTBQ9ry1-J-zkw&hl=en&sa=X&ved=2ahUKEwjLz53y8NmFAxVf5MkDHQh-CVkQ6AF6BAgbEAM#v=onepage&q=%22Mimi%20Steffen%22&f=false

Jackie_K

Thank you Iris!

I too have Myasthenia Gravis - I don't know anyone else who has it (and never heard of it myself when I was diagnosed a few years ago), so now I feel even more connected to her story. Thank you for sharing it with us and for continuing to pay it forward to the rest of us.

Thank you too for the reminder about validation. I know that this is often all my mom needs but in the stress of everything that is going on, this can get lost.

Have a great night.

Iris L.

Thank you, CS and Jackie K. I saw the table of contents with Mimi's name, but I could not read what she wrote.

As for paying it forward, I am trying to give the newly diagnosed the benefit of what I have learned, solely from the members, so that they don't become devastated as I was and fall into a deep depression. There is little to nothing available in the outside world. Last year the message board's programming was changed and all of Mimi's postings were lost. I'm trying to reconstruct as best as I can what Mimi gave to us, especially me.

Iris

concerned_sister

It's been a help to me, and in turn to DB.

David1946

Iris L.

TTT for the new members. Mimi was an inspiration!