My husband is in the late stages of CBD, which for those of you who don’t know, is a close relation to PSP. He is totally bed/wheelchair bound and has very limited speech. He has been choking on everything and nothing. I read on this site about Donepezil helping with that. He started taking it about a month ago and for him, it has had significant success. While he does still choke, it is nowhere near as frequently or severe as before. I hope this is of some benefit to some of you as you fight this awful disease. God be with all of you on this journey.
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Indiana-Girl
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Hi many thanks for sharing this very helpful experience. Would you be able to share whether it has adversely or positively impacted on cognition and mobility. Sending warm wishes Millidog
I thought I would contribute my experience. My husband had PSP. One of the first symptoms my husband experienced was irritability and frustration over limitations caused by worsening health. He was prescribed Bupropion which vastly improved his feelings of wellbeing. In year 4 after symptoms started he started Donepezil and began using a rolling walker 3 years later he started using a wheelchair. In year 10 of PSP he was still able to stand and assist with transfers before he slid out of the hospital bed and suffered a Subdural Hematoma.
In answer to your question, I see no change in my husband’s cognition or mobility. He has no ability to move anything but his left arm and that has not changed. But it does seem to have lessened the quantity and severity of his choking. I do hope this answers your questions. Everyone’s journey through this seems to be different and yet the same. I do pray you have strength, patience, understanding and endurance as you deal,with all of this.
Dear Indiana- Girl, I've been away from this forum since my husband passed from CBD on September 26. Towards the end he was also bedridden and could not even be transferred to a wheel chair any longer. He made the choice last spring to go on hospice when he still had quality of life but was aware that things were deteriorating rapidly. I am forever thankful he made that decision because the hospice people enabled me to keep him home so that he could pass in the comfort of our living room. His pain and anxiety were completely controlled the last few weeks of his life and his passing was peaceful and calm . God's timing was perfect since our two sons had arrived 3 days before and the 3 of us were standing by his bed assuring him he could let go and we would be o.k.. I couldn't help but add that I would miss him every moment of every day. The grief and sorrow that I'm experiencing is tempered by my faith and by the knowledge that he is finely free of this insidious degeneration. During the years since his diagnosis in 2018, the thought of being able to live without this only man I ever loved since I was 17 was inconceivable, but because of my trust in Jesus I'm able to cope and along with the sadness and tears there are moments of joy and laughter. I was moved to respond to you because of earlier posts when I was regularly checking this site. We are about the same age and I could identify with you and I know exactly what you and your husband are going through. About 10 days before Tom passed he started sleeping through breakfast, lunch and dinner and when he was awake he was only able to say a few words in mostly a whisper. I could no longer give him ground up pills in pudding or ice cream because he couldn't swallow. He had a patch for pain, sublingual morphine and lorazapam. I am forever thankful he had no pain and passed peacefully.
Thank you for your kind response. As you know, this disease is horrendous. Right now my husband can be transferred with the aid of a lift. He is sleeping more and more but his spirits are high and his smile contagious. He speaks only a few words and only in whispers. He is in hospice at this time and they are a wonderful resource. His nurses love him and he they. You are so right about faith. Without the knowledge that we do not walk alone and that Jesus is always with us, I would be lost. Even with this cruel disease, I can see His hand at work with the many wonderful people he has put in our path and the way my husband has affected them. I can see His hand in directing me to this group. I know He walks with me and I know His hand comforts you in your loss. May God bless you for the love and care you gave your husband to the very end.
I am the wife that wrote about her husband with PSP having positive response with Donepezil. First he was given 10 mg then later 20 mg. The first day or two after starting the medication he had some loose stools which corrected on it's own. I am thrilled that your husband was able to see some benefit in trying this medication. Wishing you and your husband my best.
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