Paul is unusual in that we know of no family history of Fahr's and he is experiencing more pain than most people with the disease.
Today, Paul has trouble walking. His pain level is often to the point that he's very uncomfortable. As it's not his pain sensors that are telling him he has pain, but the way his brain is being affected, it's been difficult to find effective pain relief. He has balance issues, he's lost a lot of weight, his temperature control is often off, he's dizzy, has nearly continuous headaches, and can only walk about 50 feet before he needs to sit down. The doctors at the NIH feel that all these symptoms are due to Fahr's.
At this point, we're looking at purchasing a wheelchair van, a motorized wheelchair, and a new home (ours is not accessible for a disabled person, even with modifications). Our medical costs have also gone up a lot (we're in an HMO with large deductibles). In the future, he will probably need nursing care at home. That's where the go fund me page would come in. To help Paul move in our own home and have him be able to see the world outside and not have him confined to a few seats in the house.
- James Levy
- Anne Ling
- Dariusz Kowalczyk
Organizer and beneficiary
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