The Beginning of the Last Phase

February 12, 2022

I know, it has been a long time since my last entry. A brief update from Louisville.

I completed the main “Big Idea” study this past November. Again, what that entailed was completing 160 sessions with each day representing 1 session. After setup, each session consisted of 8 hours of daily work. Six of those hours was spent monitoring my blood pressure with a Bluetooth blood pressure cuff and changing the intensity of the stimulation in order to keep my blood pressure at a healthy level. The other 2 hours was spent in the research lab standing with the assistance of the stimulation and the techs. The end result was really great, especially since I have been injured for more than 20 years longer than anyone else in the study, and I am one of the oldest participants.

As I mentioned in my October post, my blood pressure has improved, and I was able to stand on both of my legs for more than 23 minutes without any external medical device bracing or people supporting my knees. While that was happening, people were still supporting my upper trunk and hips so I was not 100% independent like the majority of participants in the study. Still, my journey continues, and the goal now is to continue to improve and integrate these accomplishments into my daily routine.

University of Louisville interview

Here is a link to an interview I did towards the end of last year. It was recently released by the University this past week.

New York man with paralysis stands 39 years after injury thanks to UofL’s spinal cord research

I hope you enjoy the article, and if you do feel compelled to support the study financially through the link in the article, please earmark it towards housing assistance for the participants.

Housing Assistance

When an individual commits to a study like this, it entails them picking up their life and moving. This comes with life expenses, which are not all picked up by the study. You always want research to be “needs blind” and this type of support does a lot to try to accomplish that goal.

Below are a few testimonials from participants of this new initiative.

One participant could not afford their apartment on his own. Dr. Harkema and team were able to develop a fund and establish a partnership with The Woods, an apartment complex that had several vacant ADA apartments.

They had another participant that had to pull out of his previously scheduled surgery date unexpectedly for financial reasons. They were able to offer him one of the ADA units at The Woods, and he moved in recently. He would not have been able to come to Louisville and participant in the study if it had not been for this supported housing.

Another participant had plans to relocate last summer but was unable to find accessible housing within his budget; this participant has very limited family support, and it was very unlikely that relocation/participation was going to happen at all due to limited financial resources. I am happy to report that he had an official relocation date this past December.  

Finally, another family that has been in Louisville for several months had been relocating several times, each to more reasonable hotels. The housing fund is now helping to support this family and ease the financial burden of paying for hotel accommodations.

If you do decide to donate, click on the donate button from this link at the top of the page. After you select an amount, please check off the box in the “Select a Designation,” choose the “Susan Harkema Research Gifts” option and, in the additional detail section, add the words “participant housing assistance.” Sounds a bit cumbersome, but I just did it and it’s easy.

Mapping out our remaining time

There are still many challenges ahead. With the University winter breaks, inclement weather, and the horrible surge in Covid, the past couple of months has made all of us pull back from our daily routines and limit our exposures. December and January was much quieter for me than I wanted, but things are now beginning to ramp back up.

The last leg of this journey is the home integration piece. The researchers continue to work with me on trying to tap into my neural network to allow me to move my legs voluntarily without a negative blood pressure reaction. In addition, I am working with new interface technology that is more dynamic and, hopefully, more beneficial in the long-run. Due to my lack of activity, my standing capacity needs to be built back up while I continue to work on new core/abdominal exercises. There is much work still to be done, but I’m sure I will get back to where I was and continue to improve. With that said, I don’t know if I’ll ever achieve the same level of independence experienced by the majority of the participants, but it will not be due to a lack of effort.

Thank you for the support, and I promise I will check back in with you more frequently during this last phase.

Happy early Valentine’s Day and Go Bengals!

PS – Here is how Kentucky florists deliver flowers. Check out the extra!