New to the Site

I've been following the site for a while but this is my 1st post. I am the caregiver for my dad who was diagnosed with CBD in Jan. 2016. Dad lives with me and my family, we've setup his room with hospital bed etc. He is being medically cared for with the US Veterans Admin Dept. and they have been fantastic! He is enrolled in the Home Based Primary Care program so his doctor, nurse and support people come directly to the house instead of us going to them. We only have to go there if specialty work or tests are needed.

Piecing together what info I have (dad didn't live close to me for a number of years) I am guessing he is about 5 yrs into the disease. He is wheelchair bound now, well basically 100% dependent for everything.

The one concern I have that no doctors have been able to answer is recently he has been having what I call I "waking blackout" for a short period he forgets everything but is awake and can answer questions. Sometimes he gets really emotionally when it is occurring and he NEVER remembers the event. The episodes are sporadic and usually preceded or followed by a bad headache.

One day at a time, always forward...

Ron

6 Replies

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  • Welcome. My guy is also getting his care through the VA, and they have been fantastic. i can't believe sometimes how much help they have provided, and am very grateful for the kindness and patience that have characterized all our interactions.

    The episodes sound awful - maybe like seizures? I don't have any experience with that with my sweetheart, but one of my sisters has epilepsy, and used to have symptoms very much as you describe.

    Best wishes,

    ec

  • Never saw anything as obvious as this with my husband, but believe something similar was occurring frequently. He did have the odd headache and some brief "fazed out" periods. Only when in hospital and the doc sent him off for a scan as she thought he may have had a stroke, did I begin to put 2 and 2 together.

    My purely personal interpretation - with no medical background! - is that when the tau proteins clog neurological pathways, they must interfere with brain function in similar way to a clot in the tiny arteries and produce a similar effect. Makes sense to me!

    Just like a small stroke, or an epilepsy incident, also with a brain tumour, there is damage done. Sometimes there is loss of memory too. Not always permanent, depending on how big the incident is.

    My love would spend days/hours not 'in this world' and then become himself again. We did not have time to consider all the events in detail, but YES do believe this could be 'normal'.

    My thoughts are with you and your dad having to endure these episodes. Sort of on auto pilot! Sounds like he needs reassurance that all is OK which I am sure you give him. And then put it behind you. Suggest you look at his ability and behavior afterwards to see if you can pick any minor sign of a downward trend. Does get more difficult as he loses more as there is less to notice.

    Thinking of you both on this horrid journey.

    Hugs to you both

    Jen xxx

  • That makes sense to me, Jen. Good advice, too!

  • Thanks for the quick replies. Dad's psychologist coming on Monday, I have made her aware of the latest event, and primary Doctor has reached out to neurology dept. at the VA to see what they'd like to do. Dad had been referred to a movement specialist neurologist outside the VA but recently the VA pulled him back due to no visible treatment plan was being administered, long story about the outside VA insurance plan......

  • Dadshelper Hi Ron is he on any medication, you have to watch side affect, my wife has psp but i won't put on any prescribed medication unless it has proven to have any benefit, one thing we use is coconut oil taken in tea,coffee, 1 teaspoon we have found great benefit, use organic virgin coconut oil, all the best . Peter

  • Lucky no other meds then a few vitamins, tried the usual Parkinsons meds but off those now. He does use a nebulizer few times a day to help with some breathing issues. To be honest other then the CBD and it's complications he is in good health, blood pressure, heart rate, etc are always good numbers.

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