PATIENT NEWS - Drew Smith ¦ Nidia Santiago

 

1. Drew Smith, US

 

We have heard recently from patient Drew Smith, about his experiences of Deep Brain Stimulation.  

 

"Last summer I moved back home to Lexington to be closer to doctors. In October I had Deep Brain Stimulation DBS surgery.  Doctors have been following me closely and have publications coming out soon.  DBS is mostly for tremors, dystonia and Parkinson's patients- pretty interesting stuff!

"I feel better, look better and am doing a lot better than last summer. It's been a roller coaster of a year but good! I am staying active, running, boxing skating and golfing which I struggled last summer and spring at! I could not sit still, but now I can!  Unfortunately, I am not teaching because of my health but staying active has been my job.

"I recently had a feeding tube put in. While my swallowing is good I am not great at keeping the food in.  I am not gaining weight but losing weight. The way l see it, if I can gain weight through a feeding tube, it may help with my movements and help with DBS.  Still will be able to eat and drink. This will alleviate stress, weakness and beef me up?!" 

Ruth Walker has offered this commentary on Drew's article elsewhere in NA News.  

 


 

2. Nidia Santiago, Puerto Rico

 

"I share with you a photo of Nidia and our three daughters in our most recent visit to the Ponce Art Museum."

 

"In Puerto Rico it is warm as always. We hope your winter is not too cold. Nidia's condition has continued to evolve as is natural in her illness. We keep adapting continuously to enjoy being together as a family. Although it is increasingly difficult for Nidia to communicate with her tablet, she continues to contribute with her opinions and advice to our marriage and to the education of our daughters."

 

"Over time we have learned to value and enjoy the daily moments of everyday life and to thank God for each one of them. In our case, the experience with God that we shared from youth, has been the key to face the challenges of Nidia's illness and to be able to educate and guide our daughters, now 14, 20 and 21 years old."

 

"We sincerely appreciate the efforts of NA Advocacy for your commitment and dedication to support and guide those who, as part of our lives, face the challenge of living with this disease. Thank you for everything and to continue your efforts, you will always be in our prayers."

"I appreciate your communication because by writing me it allowed me to resume contact with Eliut and Vivian, whom I called, after your first email. Nidia was having some major problems to be able to eat and at risk of perspiration, which put Nidia's health at risk. When I spoke with Eliut it turned out that Vivian had gone through the same problem and in an occasion when eating she transpired and had a respiratory arrest, but she is ok now. After Eliut and Vivian visited us, it helps us to Nidia accept the need to attend to her condition and the medical recommendation for a long time. Almost one month ago Nidia was operated to place a PEG and be able to eat properly. It has not been easy for Nidia or for us; but it has helped us reduce the risk at eating and ensure a more adequate diet. As you can see, your commitment and emails make a lot of difference. Thanks!"

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