Dan has received an initial three day infusion treatment of high dose steroids. Mayo discovered he had a high amount of protein and immunoglobins in his brain. This is causing inflammation in the brain and treatment might give him some recovery. The first night he spoke about 10 words (more then he usually says all day). We were very hopeful. He is now back to few words and often just looks at me with a blank stare. We took him to church for Christmas , but it was truly a horrible struggle. Our heArts are all broken,. To see my children suffer is also is tough. Caring for him is difficult . We were using two people to help him take a few steps to get into a wheelchair, out if the car etc. Yesterday his feet were buckling. I have not cried as has everyone else. I feel I have become void of emotion. PSP has made life so hard that if I feel that once I gave into it I would be unable to do what is necessary to care for him.
May you are find peace and feel love and support this holiday season. Thank you for providing me with insight and motivation to keep going.
Karyn
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Karynleitner
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The only thing I know to do for my husband is help him be as comfortable as possible and tell him all the time how much i love him and how important he is to me - even not talking or "doing" anything anymore; that just his living ptesence is gold to me. Im trying hard to keep my alarm & stress "out of sight" to him (..so thank heavens for this site, right?!).. You have more experience than me so I have nothing much to offer except to say "Hang in there - you're a wonderful partner" and hope Christmas day has some good loving moments.
Hi Karyn, my husband was diagnosed with CBD by a neurologist. He prescribed 5 days of steroids, and like Dan, had positive short term improvement, but not long lasting. The next step was to be a lumbar puncture, but that proved too difficult and invasive for him at his age.
Am sorry you have had only short term improvements only. It must be one of the treatments being tried to provide improvement. They will find one some day.
It may seem a morbid thing to consider, but wonder if Dan would/be able to discuss brain donation to research. We found it does need planning in advance and is not something that can be done at death unless the correct procedures are followed. As a result, my husband's brain did not go to research and we did not get confirmation of the disease.
That is a lovely photo of you all! Dan looks like he would be at home on a Harley! And do I detect familarity in the bearded young man on right? Same hairline, eyes and beard? No doubt a similar smile on Dan's face when he can smile!
Thanks for the reply . Dan did have a lumbar puncture which showed protein levels in the brain over 10 times what they should be . Also immunoglobulins, which is alarming. From this they know that there is a large amount of inflammation in the brain. They were hopeful that this might give him a 40% recovery. We had hoped he could just really smile and talk to us a little for Christmas.
The tall man on the far right is actually our son in law, the two dark haired men are our sons, the two women our daughters and the two little girls our granddaughters. We also have a 19 year old son and a 11 year old grandson who were not able to be at church with us .
I just read the book "Brain on Fire" So many interesting things are coming up - This young woman was able to recover from one of the many forms of encephalitis that a few years ago would have ended her life.
After a brain biopsy, a complicated treatment plan withmassive amounts of stuff went on. - I've passed the book on so can't be specific - if you google the book you may get to more info.
Although they have confirmed that dan has an alarming amount of inflammation in his brain, the treatment gave him a bit more speech and brightness right after the initial treatments, but now he seems to be deteriorating. I am worried.
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