"Brain Donation: A Personal Story by Solna Braude"
(This is an email I sent to the local support group in early July '08. The LBDA is driving me crazy with all their web links changes. Poor Boeve Continuum paper! So no guarantees that the link below works any more but presumably you can still find the old issues of the Lewy Body Digest on lbda.org.)
Here's a personal story about brain donation by local support group member Solna. Her story appears in the current issue of the Lewy Body Digest. While alive, her brother (also a physician) was misdiagnosed with PSP, MSA (by one of the world's experts in MSA), and other disorders. (Solna doesn't mention the PSP misdiagnosis below.) Upon autopsy, it was discovered he had LBD.
As Solna mentions in her story, advance planning is critical. This cannot wait until the loved one's death is imminent. Solna has attended our support group meetings in the past, where she has encouraged brain donation.
http://www.lbda.org/category/3477/the-l ... letter.htm
--> download the Summer 2008 newsletter from this webpage; Solna's story is on page 2
Brain Donation: A Personal Story by Solna Braude
Lewy Body Digest
The best doctors do not always get it right â my brother was misdiagnosed. In fact, my brother went to many doctors and received at least five different diagnoses.
He originally complained of weakness in his left arm and left leg and
fatigue, so his general practitioner (doctor #1) referred him to a neurologist
(doctor #2). There he received an initial diagnosis of Parkinsonâs disease
and was referred to a movement disorder neurologist (doctor #3) who
specialized in Young Onset Parkinson disease. The doctor told him that he had Parkinsonâs disease and instructed him to take medication (Sinemet) and go back to work. There were unpleasant side effects from the Sinemet (fuzziness, fogginess and drowsiness) and there was no improvement in his symptoms. The doctor told him that he was not trying hard enough and that most patients would be kneeling down and kissing his feet thanking him for giving him a renewed lease on life. He fired that doctor and went to a clinic (doctor #4) where he was given a battery of tests and they concluded that he probably had Parkinsonism unresponsive to Sinemet, which we already knew. This was not helpful to my brother so we started visiting doctors (doctors #5, 6, 7) on both the East and West Coast and Canada having PET scans and MRIs in an effort to get an accurate diagnosis. We went to England to see an expert (doctor #8) and this time got a diagnosis of Multiple System Atrophy. The doctor was adamant that it was MSA and was astounded that everyone else had missed this diagnosis. I never realized how difficult it was to get a diagnosis for a common disease!
My brother (a physician himself) decided that he should have a brain autopsy at death to get a positive diagnosis. In order to have a brain autopsy my brother needed to make plans in advance. The first decision he had to make was which brain bank to donate his brain to. Then he had to work out the logistics of harvesting (removing) the brain, like where the harvesting would take place and who would do the harvesting. At first I found this very disturbing, depressing and even gruesome and morbid. I hated it! But as my brother insisted that his brain be donated for research and for a great cause, I helped him work on the details of the donation. I found that it was very therapeutic and it prepared me for the inevitable early death of my only brother. As I worked through the process I met very kind and caring people who gave me moral support and lots of assistance with legal and technical details concerning donating organs and tissue for research.
My brother died on Saturday at midnight and as thorough plans had been
made in advance I had a checklist of what to do. Once the hospice nurse
had declared him dead, she contacted the coroner for a death certificate. I
called the funeral home and the harvester at 2 a.m.; his brain was removed
by 6 a.m. and was on its way by air to the Mayo Clinic in Florida that
afternoon. It was actually a huge relief for me to have everything planned in advance. If it had not been so thoughtfully and thoroughly planned beforehand I would have been too distraught to have carried out his wishes for a brain autopsy. The most amazing thing is how helpful and how much emotional support I received from everyone. These people work with death all the time and are very understanding. All of the planning made the donation easy and made for a great sense of comfort when he died. I was relieved it all worked as planned. Soon after the brain was received by the Mayo Clinic, Jacksonville, I received the autopsy report confirming Parkinson disease with Lewy body disease, brainstem predominant. While I was working through my grief I was able to notify and report back to each doctor that my brother had consulted and send them a copy of the autopsy reportÂ every doctor thanked me profusely and commented how useful this would be in their diagnosis of other patients. It helped me immensely in dealing with the death of my brother knowing that others would benefit because diagnosing brain disorders is really, really hard. I am very happy that my brother and I spent so much time preparing and planning for his brain donation as it helped me deal with his death and my loss.