“First I must say I have been steadily getting better. Everyone notices it. My long distance friends have all commented on the vitality and clarity in my voice. So much is changing in my body for the better. I can’t thank the staff at the SCI enough for saving my life. And of course, my beloved Dr Cheney, who knew better than anyone how sick I was … I feel such gratitude.
I was slipping into dementia from severe and unremitting CFS. I was desperate for help and when Dr Cheney invited me to go there in May, in my heart I knew I was going to get my life back. I was so sick that almost any quality of life was gone for me and I either wanted to die or get better. I was at the end of my rope as I was in constant and unrelenting pain, slipping away with dementia and fully bed-bound and home bound for several years after being vibrantly alive, loving life as an artist and a professor at the University of Minnesota, mother, wife and lover of life.
“I’ve regained peristalsis after 13 yrs. No more falling! No more chest pain, no more visits to the ER! I wake up the each day full of energy, not crashed. Thank you from the bottom of my heart… “
Although I state very enthusiastically my improvements, I still have a way to go; but because the improvements have been so marked I feel like there has already been an amazing transformation. Here are some of the improvements:
- Anyone who speaks to me on the phone comments on how well I sound. Lately, I have heard in my voice an “authority” and sense of articulation that I once had when I was a professor and artist. My brain is healing and I have energy everyday. I still must rest most days but I want to get up and begin to rebuild my life. Incipit Vita Nova- Here begins the new life! I feel inspired! Before stem cells, I spoke often in a whisper as my vocal cord were weak and I would quickly tire, slur my speech and need to stop talking as it would exhaust me. I easily crashed from less than 10 minutes of phone conversation.
- Comments from friends regarding getting well- ”woo yaa! Susan, you are lucid!” “You are back!…”look at you, your cognitive function is so much better.” I hear these comments everyday.
- I was able to titrate from 40 mg to 5 mg of Cortef shortly after my 2nd visit to Panama. Now I plan to titrate off Cortef completely. With that, the bloating and weight gain is finally coming off my body.
- I’ve regained peristalsis after 13 yrs.
- No more falling! My balance is good and am able to climb out of, for example, a bath tub – I’m getting stronger! Falling was a constant worry and I did eventually fall and break my back recently. That was the final straw and I developed PTSD. I feel less pain now in the area of the herniated discs and I wonder if the stem cells will repair such injuries . Falling was a constant worry for my husband, there was a sense that my feet were not connected to my brain. Now that worry is in the past.
- No more chest pain, no more visits to the ER! (15 visits last year!)
- Fat turning into muscle, I can now stand up from a sitting position without the help of my arms pressing me up. My family comments on my form transforming.
- Overall, more resiliency, vitality and cognitive improvement.
- I am able to organize. I’ve been able to declutter and organize much of the piles of paperwork and miscellanea that have been piling up for a decade. . CFS made organizing impossible for me. I’ve heard that this is not uncommon.
- I now have the energy to stay focused for 2 – 4 hrs at a time sitting in a chair doing paperwork or some task ( I have not had the strength to sit in a chair for 5 – 6 yrs. I wake up the each day full of energy, not crashed. Although I do feel muscle and joint pain from moving and so still need pain meds. But the most important thing is I rarely crash. I can be modestly active every day.
- Memory! Although not perfect (I believe in part due to morphine) I am so much better. I can remember combinations of numbers on the spot. I know what I did the day before, the week before and what is planned in the future. I can remember what I wanted to do from day to day.
I am able to feel inspired and that is carried through the day to the next and the next. No amount of occupational therapy with strategies to support my memory ever worked. It’s hard to explain how far gone I was. I was lost to myself and I think it was the most terribly painful part of my experience of CFS. Regaining myself did not begin until after I was home from the 2nd stem cell protocol. And I am certain I needed the 30 day MS Protocol. None of these brain problems improved the first time and I could feel I was on a slow and disappointing slide backwards.
I wanted to thank you for all you have done for the benefit of myself and my family. My daughter, who moved home to help me out, has tears well up in her eyes regularly when she sees me interact with her in ways I haven’t since she was 14. You have been a bright light in the dark and desperate days of severe CFS. Thank you from the bottom of my heart from me and from that of my beautiful family, Chris and Christina.”