PSP v CBS

[Lindaca]

Thank you all for your messages and support, can anyone tell me what the difference between PSP and CBS is, my husband has CBS and reading through all your posts can I expect the same problems? I am beginning to realise I have a long and hard road ahead, and I am scared I will be unable to deal with it.

[NanBabs]

Sorry Lindaca but I can`t tell you what differences there are between PSP & CBD, I do know they share several symptoms.

I am sure you feel scared about the future, as we all do, but please try not to dwell on it, instead try to set in place NOW any help you are going to need i.e. home care, day centre, hospice nurses, incontinence nurse ,physio, OT (occupational therapist), SALT (speech & language therapist), community matron, get your GP on board and maybe a social worker - some can be really helpful but unfortunately ours isn`t. Prepare your house with any adaptions (walk-in shower, handrails, remove loose mats etc, etc), ask for a hospital bed, a wheelchair and maybe a ramp. Lots of these things will be supplied through your OT - ours was brilliant. Be prepared to badger people for what your husband will need, we all start off as quiet and polite !

I know it feels totally overwhelming but start to put things in place now, before they become an emergency.

Best wishes to you, we all know how you feel.

xx

[easterncedar]

Hi, Linda. I am sorry you have this dreadful diagnosis to deal with. It is a shock, I know. I had to do some reading just now, because I didn't know the difference between CBS, or CBD, and PSP. It seems they are similar, but because of the different areas of the brain affected they have somewhat different symptoms. In short, PSP patients may lose motivation where CBD patients tend to lose inhibition, according to the Northwestern University Medical School website. The basic degeneration of of movement is similar. However, everyone progresses differently, some very slowly and some very quickly. My guy, with PSP, had a couple of pretty stable years post diagnosis. We were able to travel a bit with little trouble.

We all chase symptoms, and trying to prepare ahead of time can be overwhelming. One thing at a time! The thing I wish I had done earlier is to remove clutter from our home. The falling is bad for him and the furnishings! Simplify where you can.

And I recommend finding something for yourself, tai chi, an art class, a friend you can meet for lunch, whatever nourishes your soul, and get in the habit of taking that hour or two.

How is your husband now?

Hang on, don't worry more than you can help, and stay in touch. Love and peace, Easterncedar

[quickjel]

If you intended to type CBD (s and d being adjacent on the key board) then the differences between it and PSP are briefly outlined below. Please bare in mind I’m not a medic but my wife was first diagnosed with CBD and three months later it was changed to PSP.

CBD tends to affect one side of the body more than the other and can involve an alien limb feeling whereby a particular limb is no longer under your control and feels as if it is not part of your body. Happily in my wife’s case this symptom was transient.

PSP I believe typically starts by affecting the eyes such that it becomes difficult to look up and to generally control their movement. Loss of balance is another early indication. Further down the line there are a whole host of symptoms to do with loss of muscle control that it would not help to list because they vary both in degree and order of appearance with each individual.

I’m sorry if none of this helps but please discuss with your neurologist or doctor how to go about assembling a team of professional helpers. You do not have to face this alone and cannot manage the latter stages of care without a considerable amount of help. Unfortunately, as you will appreciate from contributors to this site, accessing help is not as straightforward as it should be, so the sooner you start the better.

I found our local hospice a tremendous resource both in offering day care and putting me in touch with other helpful people and organisations.

The OT proved invaluable and arranged for the delivery of all sorts of equipment long before I’d identified the need, much of it I didn’t even know existed but contributed greatly to my wife’s comfort.

As many contributors point out, take each day as it comes and try to ensure the arrangements you put in place allow for you to get enough sleep. Manageable problems seem insurmountable when you are sleep deprived and exhausted.

As if that were not enough try to maintain a sense of humour, particularly when dealing with the authorities, it could save you from an assault charge!!!

Very best wishes, Jerry.

[abirke]

Googling CBD will be a great asset to you. Also CurePSP.org has alot of information that if nothing else , you can compare and contrast your husband's diagnosis with a PSP patients. Also and foremost talk to husband's Dr. preferably his neurologist for answers. It is good for you to have a list of questions to ask when you see the dr.

As you have read misdiagnosis often comes with lack of knowledge. And since PSP is so rare, even doctors do not know what it is and or how to treat it. You are your husbands first advocate....if they (the medical field) don't know, then you have to educate them!

Goodluck

AVB

[Hidden]

Hi...My husband was diagnosed in 2014 with CBD. I am new to the PSP site but find it very helpful to read so much about the connection between the two. We live in NYC and he is being treated at Cornell. He is presently on 75mg Effexor and 25mg Seroquel for hallucinations. Five months ago he began seeing others in the house. Most of the day he does not recognize me as his wife (55 anniv.this year) and the house we live in for most of our marriage he does not feel is his home. He does know our friends and children but thinks I am the helper, driver, etc. We argue a lot and I feel I have so little patience as I have to do so much and he feels I am the hired help. He is completely incontinent, has trouble eating and only sleeps in a sitting position. We just ordered a state of the art lift chair as we have been sleeping on the couch for five months. He cannot dress or put on his shoes and I changed his wardrobe to pull up pants and Velcro closing sneakers. He cannot write any longer or sign his name. His hands are very weak and eating has become a disaster the past two months. We just got new utensils that bend and a dish that stays put when he is eating. I refuse to start feeding him as I feel this is his way of maintaining some independence. He does not know the severity of his illness. He has a B12 deficiency and we tell him that he has lost some cognitive ability due to the anemia. He gets B12 shots every two weeks and takes 5,000 mg. supplement a day as he does not have the enzyme to hold the B12 in his body. Joe is 78 and I am 74. We have no help at this time but two great sons who are always there for us when I need to get him out of his delirium about me. We were able to get to Disney last month and he did very well walking at least 3 to 4 hours a day for at least 4 of the 7 days we were there. He loved it.

I must say I live on Xanax as I get so frustrated with his care. He is not easy to dress and resists instead of helping and between sleeping on the couch and constantly bending my back hurts most of the time. However, I have recently learned to help him up by using a walker for him to hold on to as he rises and I don't have his weight on my arms to lift him. I just put all my weight on the walker and he gets up after a few tries. My greatest fear is that I will get ill and not be able to care for him. I am also afraid because he cannot use the phone at all. I just purchased a new system and there are pictures on the receiver and I hope he can just press the familiar one and make a call in an emergency. I never leave him alone and I take him to all my chores, shopping etc. The hardest part of this journey is that I feel I am lost in his eyes and I have disappeared. I no longer feel loved and instead feel quite lost. I am sorry to go on and on but this site has been my refuge, and my release, and I hope we can connect.

God Bless,

[Lindaca]

I am so sorry to hear all your problems, I am in the united kingdom. it seems to be mainly PSP on this site and am glad to communicate with some else experiencing CBD. My husband refuses to acknowledge there is a problem, puts it down to the aging process, he is still quite independent, takes the dog over the nature reserve, that is the only place he goes to on his own now, I can leave him at home for a while, as he can get himself a hot drink and a sandwich, but I notice that is becoming difficult for him now. he takes no medication and does not see any medical professionals, he was finally diagnosed last year, but had symptom's for a few years before. I feel I have a long way to go. That is worrying about your husbands delirium, is it caused by the medication?. I am glad your sons are near by to call on, I do not know how it is where you live but help seems to be difficult to access here judging by peoples posts on this forum, and also expensive, we retired and moved to the coast in a beautiful bungalow, I am worried now I may have to sell it to fund a nursing home when needed. It sounds such a lot of physical care you are having to give your husband. I really do not know what to say, but I feel your pain, and hope you will continue to keep in touch with me on this site. feel free to let off your frustrations. xx

[Squeak63 in reply to Lindaca]

Hi, my husband too has been diagnosed finally!!with cbd. We first noticed symptoms just over 2 years ago and it is quite daunting looking at things to come. It would be good to know the differences between psp and cbd though.Hopefully through this website we can learn and support each other. The road ahead does indeed seem daunting. I would like to know more about time scales which I appreciate is tricky as each person is unique but there surely are some time scales?? anyway I wish you all the very best. My over riding emotions right now are sadness and fear.

[Hidden]

Thank you Linda. I think your hubby will do much better because he appears to be strong willed. However, be mindful of sudden falls as I took too much for grated in the early parts of this journey and we had quite a few. I think he hurt his head when he fell down the stairs last August and we were more concerned with helping him heal a fractured collar bone and broken finger. It was six weeks later that he started this delirium and I think it is a result of that fall. I just wish I could accept it when he does not recognize me as his wife. I fear that when I do it will really feel like caring for a stranger. I hope your mate continues to do more on his own, but do be careful when he is alone. Warm regards,