My Dad’s disease was more progressive then expected and while seeing a movement disorders specialist at Rush Hospital, the topic of DBS (deep brain stimulation) surgery came up. Without hesitation he decided to go ahead with the surgery because he was sick and tired of being sick and tired. The odds of any major complications were so low that we didn’t think much about it. The disease had started to take a tole on his life so he was actually looking forward to the surgery. He was excited at the chance of a life changing procedure…..well life changing it was.
In September 2011, my Dad went in for surgery and after 9 hours of brain surgery, suffered an intracranial hemorrhage (the chances of hemorrhaging from the implant were 0.4-0.6%). He then had to be rushed into emergency surgery which lasted another 3 hours. The pressure and bleeding built up so quickly that he suffered permanent brain damage on the left front lobe and has lost the ability to walk along with his speech and language. He also lost complete use of his right arm. After 4 weeks in and out of ICU and 3 months of inpatient rehab, he was able to come home. After a few months of at home therapy he started outpatient therapy at Marianjoy which was awesome for him. They worked really hard with him and got him to the point of walking and going up stairs with assistance. Then over the last couple of years he has suffered a few seizures which have put him back a few steps. But as usual he gets right back to working hard at therapy.
My Dad is someone I look up to and I see his strength and determination and it makes me proud to be his daughter. He was always someone who stayed optimistic throughout the progression of the disease and always made the best of what he had. I don’t think that will change no matter what the situation is. He has always put everyone ahead of himself and now he needs our help.
I have this fundraiser every year in order to raise money to support the financial burden of having constant medical help. Between his medications, rehab, supplies and caregivers at home, the monthly financial output keeps coming…it never seems to subside. It’s been hard on us but we want to do all we can to make sure he is taken care of and comfortable. He wouldn’t have it any other way if the situation was reversed. He always has been and always will be an inspiration to me.
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