I am a little overwhelmed today. I read these posts each day from my newsfeed of the demise of loved ones and newly diagnosed PSP/CBD individuals. Those posts keep coming. A little over 6 months ago, I had never heard of this disease. Sometimes I have to go away from this forum
I am struggling here at home with my wife. For the last couple weeks she is pacing/walking in circles around the house. She bumps into furniture and walls constantly. Surprisingly she is not leaning as she was previously. She is a little different in that she had always been athletic and able to walk without falling much(when she is not leaning). She however is unable to communicate in complete/coherent sentences, so I can’t find out what she is anxious about or where she is trying to walk. When I take her out of the house to take advantage of this energy she goes limp and can only sit or lean against me. I try to get her to sit and watch tv, but it doesn’t hold her attention. It is also a ordeal to get her to eat(which she can no longer feed herself), so she is skin and bones. She is on anti anxiety meds, so I would hate to see what it is like with out them.
Thanks for letting me vent,
Bobby
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Beads0122
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Oh Bobby sorry you are having so many different problems, george was never really walking about, he has a good appetite, has to be fed the lady 4 months. In a wheelchair all the time. Could you not got back to your doctor? Lots of different things going on, sending you a big hug seems like you need it. Yvonne x
Thanks Yvonne. Our doctor is very good about communicating via email, but she has only offered sympathy on the pacing. She has been more helpful on other issues.
I’m so sorry. I have no answers regarding the pacing, but can understand the frustration with the inability to meaningfully communicate. My husband has has that problem from early on with this disease. He seems to sometimes understand everything and other times not. However, I think his feeling and emotions remain.
If you have the strength to be patient, one day she may find a way to communicate her feelings.
Maybe speaking to a psychologist would be helpful. Sometimes they know just the right questions to help. They interviewed my husband with him responding with head shakes.
Best of luck. It’s all tough.
Karyn
Sorry to hear of your ordeals. Just trying to think outside the box... how long has your wife been on the anti-Anxiety meds? Some of those meds have anxiety-like issues as a side effect, especially if the person has only been on them a short while.
She has been on escitolopram for about 5 years now. It was originally prescribed when she was diagnosed with early onset Alzheimer’s and anxiety. Your note did spark my interest in rechecking the side effects and although there is a listing of about everything you can think of, it does indicate a possible increased agitation and anxiety. I’ll speak with her neurologist again on it.
My heart aches for you: we have lots of suggestions for physical symptoms, but the fronto-temporal and cognitive issues that seem to be so often part of CBD leave us a lot more uncertain.
Does it happen more often in evening and night,,? Did the neurologist who dx'd her seem to know about FT symptoms and give any guidance at the time? I find precious little guidance on how to handle the cognitive/mental/FT symptoms of CBD. Psychiatrist referrals take forever...maybe a gerentologist or Nurse Practitioner who deals with "garden variety" dementia symptoms would bemore helpful?
I woyld press your GP for more support wirh these symptoms from another specialist....
Bobby could it be any meds she is on? I know you mentioned anxiety meds but my husband was taken off his heart medication which I was really surprised at. Thinking back I never asked why as he came off them one at a time! I just assumed there must be a conflict. I really think you need to talk to another doctor.
Has your wife seen a movement specialist? If not he/she might be able to help. Be aware however that most doctors are clueless about these conditions. Only doctors at specialist centres seem to know anything about it. Maybe you could ask for a second opinion? Never be afraid to fight for your wife and yourself! Nobody else will do it?
We actually see two neurologist (who do consult with each other). A regular neurologist (who had originally diagnosed her with early onset Alzheimer’s, which is understandable with the frontal temporal aspects of CBD) and the specialist who deals with PSP/CBD and research’s these neurological diseases. Unfortunately I feel like we are just another data point in the specialist’s database of information on people with CBD/PSP
Hi Bobby. I already admire you so much! I have been diagnosed with PSP (was previously diagnosed in 2014 with CBD), along with cerebral ataxia with dementia. Guess that means I walk funny and forget a lot! I have told my husband about this site, but he just says he doesn’t use “computers” (although he does for his work). Anyway, I think I can understand some of what your wife is experiencing. I am also on anti anxiety meds, have been for several years since my first diagnosis. I lean a lot these days, but can still communicate well enough on most. Walking...not so much. I am able to stay busy playing simple games on my iPad, but dislike much chaos. I prefer no TV, radio- any noise really. The outside light coming in a window can really bother my eyes. It’s difficult to read now. Going outside the house is often too stimulating and can upset me. I do sometimes enjoy going on trips if it’s just riding in the car. Too much traffic, like city traffic, can often be scary. Shopping is the worst! Too many noises, colors, lights, talking and too many “things” to see for my brain to handle. If/when I can no longer use my iPad for distraction, I am pretty sure I’ll be pacing too. Often I don’t sleep, even with a prescription medication for that purpose. I sleep well only every 2-3 days, then for 6-8 hours if I’m lucky. Otherwise I’m on my phone or iPad, trying not to disturb my husband at night, trying to keep occupied during the day. The ringing house phone, company or someone coming to the door can be distressing. Also, I have no desire to eat, no appetite whatsoever. Things that are cool/cold and sweet have the best chance to tempt my appetite, especially fruit, room temperature or cold puddings, ice cream, etc. My very best days involve a quiet, slightly dim house or my favorite music quietly, very quietly playing. I still also see a psychiatrist and counselor (for as long as I can communicate) since I was diagnosed. They were recommended by my neurologist. I see a movement disorder clinic doctor at the University of Iowa when my condition worsens. That’s more for their information/studies than me. I’m sorry this is so long, but as long as I can still communicate fairly well (my husband had to help me find a few words my brain had “lost”), I hope this can help. Maybe i’m Way off base, but I feel like I understand her because I can see myself doing this when I lose my way as “it” takes over more. I think i’ll Copy this for my husband and children to read when my turn at pacing comes. BTW- I also have an extra calm, quiet companion usually at my side. My Lacey is a 7pound Chihuahua (dog) who loves to cuddle in bed, on the sofa or in the car with me. The key words here are “extra calm and quiet”. She has brought me unbelievable comfort 24/7 for the past year. She even stayed with me during the day when I was in Intensive Care this past week! Pet therapy with your own or someone else’s pet, with the right temperament, can be a wonderful help. Sending my prayers and support to you and your wife. -Deborah
What a great reply, GmaDeb!!! You have helped by reminding me how much better "calm" is for my husband. Often after finally getting out to the grocery store, he will suddenly want to go home. It makes more sense now. He is happy and comfortable at home in peace and quiet.
I wish you well ~ sounds like you are doing the best you can.
I admire you and the others who participate in this forum who have this cruel disease. My wife is now unable to interact with her iPad and could not share this much information. Like everything else with this disease, it was a slow progression from misunderstanding some of the apps, to where she can’t use it at all. This was a progression over the last 3 years.
Your insights on stimuli are helpful and make sense with her responses, especially when we venture out of the house. I tend to be a little loud and have found that to be very disquieting to her.
We arucally did adopt two senior dogs earlier this year. They do tend to calm her, but both struggle to interact with each other. The dogs are a little afraid of her because of unpredictable behaviors and jerky motions. One of the bonded pair tends to be more empathetic and yesterday curled up next to her when she sat for a moment.
My thoughts and prayers are with you. Thanks for the insights.
Hi Bobby. I think I can understand your wife's pacing. It's an energy that has to be released because of the worry.
When I am angry or worried, I am well known for rattling the pots and pans that need washing in the sink; or cleaning a bench top. So I can relate to that need to release.
It must be distressing for you to watch! Can you hold her hand and walk beside her? Show her you want to be with her and help?
I wonder if you could dance quietly with her instead. Put on some gentle walz or smoochy music, hold her in your arms and show her she is not alone.
I hope you find a way to get through to her that you are there for her.
That’s funny that you suggest the dancing. Just last night I had some smooth music and we did kind of danced. I’m not sure who was was more awkward. I tend to be rhythmically challenged. One thing that does help(incline me) is brief reassuring hugs.
There is some aspect of this where she wants to help. She will pick up things and move them as if to straighten the house, but usually results in us losing tv remotes, slippers, or lthing for a while until I can find them.
So pleased you have tried it. My hubby had no rhythm either but it doesn't matter too much if it doesn't upset your wife. The closeness and hug is the more important. Hope it helps.
Regarding 'lost' objects, how frustrating!! I do it all the time and there is only me here!
I solve my own problem by putting things in same place each time, but have developed that over 20 years.
Not sure how to improve the situation. I wonder about labels, or colours - and getting her brain to recognizing matching them..
I frequently 'lost' things and would ask hubby where 'he' had put them. This caused a small riot (!) as usually I had forgotten I had touched it in the first place! Took me a long time to change my thinking! Hope you don't have similar reactions.
I am curious if your wife has ever tried low-dose lithium orotate? (NOT carbonate) I have been reading about this supplement recently and it seems as if it might be something that could be beneficial. blog.drgina.com/tag/lithium... a thought.
Dear Bobby. No solutions or suggestions but so glad that you were able to vent. I agree that the website can be sad but it is also so useful and makes one realise that one is not on ones own. Unless you live with it no one can really understand and I find that helps. Lots of love and hugs Ali B
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I have told my husband about this site, but he just says he doesn’t use “computers” (although he does for his work). Anyway, I think I can understand some of what your wife is experiencing. I am also on anti anxiety meds, have been for several years since my first diagnosis. I lean a lot these days, but can still communicate well enough on most. Walking...not so much. I am able to stay busy playing simple games on my iPad, but dislike much chaos. I prefer no TV, radio- any noise really. The outside light coming in a window can really bother my eyes. It’s difficult to read now. Going outside the house is often too stimulating and can upset me. I do sometimes enjoy going on trips if it’s just riding in the car. Too much traffic, like city traffic, can often be scary. Shopping is the worst! Too many noises, colors, lights, talking and too many “things” to see for my brain to handle. If/when I can no longer use my iPad for distraction, I am pretty sure I’ll be pacing too. Often I don’t sleep, even with a prescription medication for that purpose. I sleep well only every 2-3 days, then for 6-8 hours if I’m lucky. Otherwise I’m on my phone or iPad, trying not to disturb my husband at night, trying to keep occupied during the day. The ringing house phone, company or someone coming to the door can be distressing. Also, I have no desire to eat, no appetite whatsoever. Things that are cool/cold and sweet have the best chance to tempt my appetite, especially fruit, room temperature or cold puddings, ice cream, etc. My very best days involve a quiet, slightly dim house or my favorite music quietly, very quietly playing. I still also see a psychiatrist and counselor (for as long as I can communicate) since I was diagnosed. They were recommended by my neurologist. I see a movement disorder clinic doctor at the University of Iowa when my condition worsens. That’s more for their information/studies than me. I’m sorry this is so long, but as long as I can still communicate fairly well (my husband had to help me find a few words my brain had “lost”), I hope this can help. Maybe i’m Way off base, but I feel like I understand her because I can see myself doing this when I lose my way as “it” takes over more. I think i’ll Copy this for my husband and children to read when my turn at pacing comes. BTW- I also have an extra calm, quiet companion usually at my side. My Lacey is a 7pound Chihuahua (dog) who loves to cuddle in bed, on the sofa or in the car with me. The key words here are “extra calm and quiet”. She has brought me unbelievable comfort 24/7 for the past year. She even stayed with me during the day when I was in Intensive Care this past week! Pet therapy with your own or someone else’s pet, with the right temperament, can be a wonderful help. Sending my prayers and support to you and your wife. -Deborah
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