Dan's CRPS Treatment Fund

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Raised by 135 people in 20 months
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In January 2017 our Dad, Dan DiGennaro, underwent a routine total knee replacement surgery.  His doctors expected it to go smoothly. Unfortunately, following the replacement, he experiened a cascade of complicaitons including a blood clot, recurrent cellulitis infection, and arterial blockage.  While were were able to resolve all of those issues, because of the trauma and damage to his nervous system he was diagnosed with Complex Regional Pain Syndrome (CRPS). 

What is CRPS?
If you are unfamiliar with CRPS you can learn a bit more about it HERE . It is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury. The pain is typically accompanied by swelling, skin changes, extreme sensitivity, and can often be debilitating. It usually affects one or more of the four limbs but can occur in any part of the body and in over 70% of the victims it spreads to additional areas.

According to the McGill Pain Index, CRPS has a rating of 42 out of 50. CRPS is chronic which means he feels this pain all the time. There is no known cause or cure. Some symptoms of CRPS include:

· Continuous burning or throbbing pain, usually in your arm, leg, hand or foot

· Sensitivity to touch or cold

· Swelling of the painful area

· Changes in skin temperature — at times your skin may be sweaty; at other times it may be cold

· Changes in skin color, which can range from white and mottled to red or blue

· Changes in skin texture, which may become tender, thin or shiny in the affected area

· Changes in hair and nail growth

· Joint stiffness, swelling and damage

· Muscle spasms, weakness and loss (atrophy)

· Decreased ability to move the affected body part

For our Dad, his CRPS currently affects his right foot and ankle.  The pain is best described as that of being set on fire. The accompanying swelling and immobility make it almost impossible for him to walk.  Due to his lack of use of his foot, he is now suffering from osteoporosis. One of his specialists at John Hopkins University said his foot is essentially falling apart. 
(Actual photo of Dan's foot)

Those are the physical symptoms, now try to imagine what kind of toll this disease has on his mental health. Depression and emotional disturbance are inevitable in CRPS patients. Since January our Dad has become home bound. He is unable to work, drive, go to dinner or a movie, play with his grandchildren, the list goes on.  At the moment he can only tolerate being up and moving for about 2 hours before the pain becomes too unbearable. Because of the physical pain, and mental anxiety he has not slept in months, he just takes a series of naps each day. To make things more complicated, our 90 year old grandmother lives with him, and he helps care for her. He is at a point where his quality of life is so low, it is hard for him to see any light at the end of the tunnel. He went from living a healthy, active life, to being confined to his couch in extreme pain, keeping his foot elevated. 

Our Dad has tried several treatments to help manage his condition, including physical therapy, narcotics, neuropathic pain medications, and spinal injections. Unfortunately, he has had no success with these treatments, and his condition is continuing to deteriorate. Time is of the essence with CRPS and we are moving as quickly as we can to get him into remission, as this is our best option for him to regain his quality of life.  There is no cure for CRPS, but patients can go into remission and that is what we are hoping for!

Here is what we are funding:

1. 10 weeks of treatment at The Neurologic Relief Center in Fayetteville, Arkansas $18,000 USD
2. 10 weeks of hotel stay $5000 USD
3. Living expenses for 12 week stay $2000 USD
4. Airfare $1500 USD
5. Transportation during stay $800 USD
6. Frequency Specific Microcurrent Machine for him to use when he returns home (he will use this for the rest of his life to hopefully keep him in remission and manage his pain) $3000 USD
7. Medical bills from various hospital stays January 2017-March 2017

Any donation helps! We hope to raise the full amount for this 10 week course of treatment. Any money raised over that will go towards paying his medical bills from the previous months. 

Please help us to get our Dad and Grandpa back!

Thank you!
Danielle & Emily
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Hello everyone!

I am so sorry for the incredibly delayed update on this page - Dan came home at the end of October 2017 and we all were caught up in getting him settled and home, and then the whirlwind of holidays hit!

But I just have to thank you all so much for your love and support last year! It has been such a journey, especially for our Dad. And it is with a grateful and happy heart I can share the update you have all been waiting for.

It's a long post! So if you'd like skip to the video of his "graduation" from the Neurologic Relief Center you can copy and paste this link into your browser: https://www.facebook.com/TheNeurologicReliefCenter/videos/1735291439836367/

In August 2017, Mike (Danielle's husband) flew out with Dan to Arkansas to begin his treatment at the Neurologic Relief Center with Dr. Katinka van der Merwe. I know some people thought we were crazy. It was in Arkansas, there were so many arrangements to be made (lodging, transportation since he couldn't drive, grocery shopping, etc.), it was very costly, and the treatments were unlike anything we had heard of, far from the typical medication/surgery route recommended by most doctors. But after speaking with Dr. Katinka back in June we knew this was our BEST chance for him to HEAL. To truly get to the root of the problem, let his body heal itself, and not just put a bandaid on it with another pill or invasive procedure.

The first few weeks were certainly a challenge. There was a lot to figure out when Mike and Dan first arrived in Arkansas. And the week after Mike left, my Dad ended up in the hospital with kidney stones and dehydration. It was most definitely a defining moment in his road to wellness, as he needed to decide if he was going to stay in Arkansas and continue with the treatments, or come home to get better and return at another time. He made the brave choice to stay in Arkansas, because he knew that it was the best place for him to be.

After recovering from the kidney stones, he eased into a routine, and began to thrive! It is very hard to put into words what Dr. Katinka and her team do at the center, please take a minute to head over and read this article written by Dr. Katinka: https://rsds.org/crps-awareness-day14-anatomy-hope/

It so eloquently explains how she came to start the center and what exactly it is that they do. Here it is in a short list, but I encourage you to read the article for a really great explanation of everything:
1. Waking up the vagus nerve
2. Neuromuscular Reeducation
3. Frequency Specific Microcurrent Therapy
4. Nervous System Rehabilitation
5. Detoxification
6. Functional Blood Panel Analysis
7. Supplementation based on your DNA

They take a truly holistic approach to healing you from top to bottom, inside out. They are not only incredibly knowledgable, but they are also unbelievably caring and empathetic.

I know that for our Dad, his Arkansas family was a large part of his healing. Because you are there for so many weeks with the same group of people all day, each day, you get to know each other very well, essentially becoming a family. The other patients and family there became such part of the healing process, and will forever be a part of our lives.

Danielle flew down in September 2017, and again in October 2017 for Dan's last week of treatment. It was amazing to see the progress made in-between each trip. He grew stronger and healthier with each visit. When she flew down in October for his last week of treatment, he was a changed person. A complete 180 from when he first arrived in August. It was honestly shocking to see his physical and mental transformation. It is very difficult to put into words what it was like to see someone go from being so close to giving up on life, to thriving.

Dan arrived back home in Delaware at the end of October. It was quite a reunion for everyone to see him so well. Upon returning home he has been diligent in continuing to use what he learned in Arkansas (exercise, eating well, using his PRS unit) to continue to stay strong, and make even more progress! He can walk for miles, literally, with no cane or any sort of assistance. If you saw him out, you would have no idea anything had even happened.

When he returned home he initially thought he wouldn't be able to return to his previous job, as it is a bit physically demanding, requiring him to stand for long periods of time for long shifts. But after a week or two of being home (and getting a little stir crazy!) he decided he wanted to at the very least give going back to work a try. He started back to work after Thanksgiving and is doing so well!

Words are not nearly enough to express the deep gratitude we have for everything everyone has done for us to get to this place. From friends and family, Dr. Katinka and her staff, the new friends made at the center, the incredibly helpful staff at the Candlewood Suites where he stayed, Danielle's crafting community, and even strangers that found their way into our path - it was because of all of you that Dan has his life back.

And also, just as important, we hope that his story can serve as a source of hope for anyone traveling on a similar path. Do not give up! Do not settle! It might seem impossible, but it isn't! Do not be afraid to ask for help. There are so many good and kind people in this world, who will be there to lift you up in a time of need. If we had not asked for help, this would not have been a reality!

If you, or someone you know, is struggling with CRPS or other neurological pain conditions, we urge you to please reach out the Dr. Katinka at The Neurologic Relief Center in Fayetteville, Arkansas. She is a true expert in this field, and doing groundbreaking work!
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In about 3 weeks we head to Arkansas! The flights are booked and we are so anxious to get down there and have Dan begin treatment! Unfortunately, he has had some increased pain and swelling over the last few weeks, so we are very lucky that our trip is so close, to hopefully prevent any more significant decline. We cannot say thank you enough to everyone who has donated. We have raised enough to fully cover his flights, lodging for his entire 10 week treatment, and groceries. This has helped to ease not only the financial burden, but also the anxiety that such a large bill causes. We would still love to be able to help contribute to the cost of his treatment ($15,000) so please continue to donate, and share our story! Every little bit helps! Once we get down there we will begin to post more regular updates to let everyone know about his progress! We really can't thank you all enough for your kindness and support during such a difficult time! Please continue to send prayers and positive thoughts!
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I just wanted to stop by and say thank you so much to all who have donated so far! We are so thankful to those who have shared our page, and sent prayers and messages of hope and encouragment. It is hard to put into words how difficult this year has been, and with each passing day and week our Dad has felt more confused and alone. In sharing his story, and seeing people respond, I think it has helped to reassure him that he is not alone, people do care, people are thinking of him, and we are going to get him the treatment he needs! Thank you again so much! I will continue to post updates, especially as we get closer to August!
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$43,249 of $43,000 goal

Raised by 135 people in 20 months
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