Cortical basal syndrome was diagnosed at the Mayo clinic in Rochester Minnesota… My wife’s condition was diagnosed in July 2015… Looking back we could see that it started 4 years before that … She was starting to have trouble with balance and stepping across changing thresholds...In 2016 she began falling … She fell 7 times ...She is now in a wheelchair, a recliner, or in bed… She has lost the ability to write and watches a lot of TV programs and movies… Her speech is getting softer and more difficult… She is doing Moderate articulation drills..... her left arm is atrophied and rigid… SHe was doing Botox injections with EMG but has decided she does not receive the desired effect of Botox which is relaxing the rigid muscles … We use a pivot device on the floor to transfer her from wheelchair to bed, or from wheelchair to recliner, or from recliner to wheelchair… The pivot device is like an 18 inch Lazy Susan that she puts her feet on and we are able to turn her so that she can be seated More easily as her feet just to not Get messages from the brain… CBD is a hideous neurological movement disorder… When the neurologist at Mayo clinic diagnosed The disease…He said…” This is a tough hand to be dealt”... Our faith and trust in God has deepened We wish you good fortune as you endure… Good thoughts ,Hionarock
Diagnosis of Cortical basal syndrome - PSP Association
Diagnosis of Cortical basal syndrome
Dear Hi,
I remember your first post. I'm sorry you and your wife have to go through this. The disease is so unfair and cruel. What did our beloved spouses ever do to deserve this fate?
Are you managing ok? Do you have enough support so you can cope without burning yourself out?
Sending you hugs XXX
Anne G (former CBD spouse).
We have a really good team of caregivers as well as lots of friends and family that are very supportive and visit whenever my wife feels like it… We found a local neurologist that trained under the head neurologist at Mayo clinic… He currently has three patients with CBD… He understands as best he can the symptoms/consequences of the disease.... A local pain clinic has been most helpful in directing appropriate meds… The most frustrating thing for my wife are the tremors in her left side… And it’s starting to cause itching in the left breast area… Thanks for your support… Hionarock
Does your wife have trouble with her vision, or eyes red and burning??
She has had trouble with her right eye burning and we use Lumnify.... she really can’t read very well anymore or write
Reading your wife’s story it could be my story as her symptoms appear to be the same as mine. I feel so much sympathy for her as the future unfolds. It’s a truly dreadful disease which not only affects the suffer but their nearest and dearest as well. I feel like such a huge burden on my family that I would be quite happy to be out of it and give them their lives back. Sorry if this sounds defeatist but I know the worst is yet to come and frankly it’s very scary.
Self pity session over for now. Sorry folks
Thanks for sharing your struggle.
My mom has corticobasal degeneration and I would never want my life back over having her in mine. Even though I have already lost her in some forms I’ll take whatever I can get. It is tough for us but I can’t imagine how you must have to cope. Know you are worth it!!! Sending love and prayers.
Hello. So sorry to hear of your spouse's continued decline. My husband (CBD patient) and I also sought out the Mayo Clinic, Rochester, initially to confirm Emory University Neuro Clinic's diagnosis and then two years later for an assessment of his status. Worked with Drs. Jones and Josephs, who seemed quite knowledgeable. Working now with head of Mayo's Movement Disorders Department in Jacksonville, as husband can no longer travel very far. It sounds as though you have good support and have done a good job of taking initiative to find people and assistive aids to help her. My husband is emphatically all done with Botox; it helped rigid muscles in his neck two years ago, but the injections of March, 2018 made him dramatically worse. We are awaiting a power mobility chair which has been customized for him . It will tilt his body and "rotate" his center of gravity so that he is sitting in the chair with his head tilted back and supported since he can longer lift his neck enough to see people. I don't have a lot of advice on how you can stay positive; I am worn out right now with his care and tired of watching him decline. I am trying to stay close to my faith because it has sustained me through many difficult moments.
Marilyn
Dear Marilyn,
Since my CBD hubby has passed, it has often struck me how cruel it is that in the last few years or months of our beloved's life - the last year(s) of ever getting to hug them, look them in the eyes, appreciate their alive selves (no matter their condition) - we are too exhausted and burned out to do more than make it through the day's chores.
Just another cruelty of the disease 😔
Hugs to you XXX
Anne G.
You are so right, wise lady!
Not to mention the bad tempered outbursts on my part before diagnosis made sense of my love's "failings". I think an early diagnosis, apart from its devastation, possibly gives time to adjust. At least I buried the hatchet in his last 6 months!
Hugs
Jen xxx
Dear Marilyn. How did you get the custom power chair? Did the Mayo Clinic drs order it or a therapist? Who did you order it from?
Thank you for your consideration.
Hello, mj.
While we consult Mayo Clinic neurologists from time to time, most of my husband's week-to-week care comes the Veterans' Administration Medical Center in our region; the resources there have been awesome and the staff very committed to helping him. My husband is now receiving at-home primary care from a team comprised of internal medicine practitioners, a physical therapist, an audiologist, a dietitian, a pharmacist and a social worker. Physical therapist recommended that we take a look at the power mobility chair and put us in touch with people who could help us " try one on for size," order it and customize it for him. It should arrive in a few weeks and then I will know more about its true value to him. The company that handles the order is called "Pride Mobility" and chair we have ordered is a Quantum Q6 Edge. I'm in the process, now, of getting threshold ramps installed in the house and looking at minivans that can be converted to accommodate the necessary adaptations for mobility chair transports, but will wait until chair arrives before I purchase car and begin the mechanics of changing vehicles. Just as an aside, we know a talented young neurologist who left our neuro care team to pursue a post-doc in Palliative Neurology and each day I am reminded of the importance of this new discipline in Neurology, as neurodegenerative conditions defy cures but are in desperate need of protocols and aids that relieve the suffering and improve the quality of life of our loved ones.
Thanks for sharing. Appreciate the info. My husband has been diagnosed since 2007 and had it for years before. Similar presentation but he continues to walk slowly with 2 person assist. We use 1 person in front for guidance and balance and a gait belt with another person in back to insure no falls. Would like to know if Mayo Clinic had any ideas youbthought were useful.
Your husband is indeed an outlier! That's a long time and still mostly mobile 
May you have many good (mostly) years more xxx. Anne G.
Thank you. How many others with CBD have used feeding tube? If you don’t mind me asking?
Gosh...I don't know that anyone has ever surveyed the group on this....I've seen reference to feeding tube with CBD patients...but don't know the numbers!
A.G.
Thanks for your response
Hello, mtorres--
Saw your question about utility of Mayo consult, am thinking about it and am offering a perspective on value of consults at places like Mayo. There are, sadly, no cures at this time, but both my husband and I want to know that we have talked with the physicians who, by virtue of their practices and their research, know more about the course of these conditions than most. It is not unusual, I have learned, that a neurologist in private practice may see only a few PSP or CBD conditions in a lifetime of practice. When we were at the Mayo Clinic in Rochester several years ago, I asked the neurologist how many CBD patients he sees and he said, "about one a week." Two months ago we did another Mayo consult because we seemed to have run out of "arrows in the quiver" to help my husband. After the consult, we had a plan of three things that might help him (15-40%) live more comfortably. Cynics might argue that we are just spinning our wheels but quality of life is important, especially when you know that you have a condition that defies cure. As poet Emily Dickinson wrote, "Hope is the thing with feathers/ That perches in the soul/And sings the tune without the words/And never stops at all/And sweetest in the gale is heard/And sore must be the storm/That could abash the little bird/That kept so any warm."
Marilyn
And I am wondering, what those 3 “arrows in the quiver” are that may be small but worth gold to people dealing with the day to day process of quality of life. We are out of money so sharing these things would be gold to us. Thanks again,
Hello. I am willing to share with you the suggestions my husband received, but do so with the caution that while we all share the "common denominators" of CBD, each case truly is unique. That is especially true with my husband because every Mayo physician who has seen him has said that his illness has some features of CBD, some features of an atypical Alzheimers, some features of advanced Parkinson's and some features that (again) are unique to him. That being said, because my husband has seen benefits in the past from increased doses of Sinemet, (stopped walking 15 months ago, but bumping Sinemet up to 900 mg/day and twice a week physical therapy restored his ability to walk -- s suggestion he received at the Emory University Neurology Clinic) he is now trying increased and aggressive doses of Sinemet to try to relax the muscles that have contracted in his neck. So far, we see a slight benefit but nothing dramatic. He is still not at the highest possible dose of Sinemet, so will stay with that protocol for a while. Another possibility is to try an off-label use of the drug amantadine. This drug has been around for years and was first introduced as a flu drug, but physicians noted that the "flu drug" seemed to help some Parkinson's patients. I've been told by a local neurologist that using amantadine may help movement but can hasten cognitive decline. However, I haven't done any research to evaluate the data on that. I do think that some individuals on this website have tried amantadine and they have some experiences to share. The third possibility introduced is a neurosurgery procedure called "deep brain stimulation." It has helped some patients with advanced Parkinsonisms, I understand, but my husband is reluctant, right now, to give it a lot of thought. If we get to that point, we'll do our research and he will decide. I do know that if you do the deep brain stimulation, you want to go to a hospital that does a lot of them -- better results and fewer complications.
As an aside, I have also been giving him CBD oil tablets, but he has not seen signfiicant benefit.
You mentioned that finances were tight right now. Most of us who are struggling with CBD/PSP can really understand that! The most recent Mayo consult was just over two hundred dollars, and our Medicare and Medigap insurances covered most of it. Of course, if you have imaging and other tests, costs and co-pays will go up. That was also the case at the regional center in Atlanta (Emory) where we went for several consults. Others in the US on this website have found regional medical centers with strong neurology clinics very helpful. In particular, I remember high praise for Southwest near Dallas. These clinics do try to work with you on payments. If a consult at a regional US neuro center interests you, I'd suggest pulling up US News and World Reports annual rankings of hospitals by specialty and then taking a look at the websites for the hospitals and skimming the bios of neurologists to see whether PSP or CBD are clinical interests of the providers.
You never run out of things to do with CBD (I am smiling) - but remember to take some "time-outs" from the illness. One of our daughters was here for Thanksgiving and that was such a nice interlude of good, family time.
Marilyn
Hi Marilyn. Appreciate the info on drugs and brain stimulation. Thanks for sharing. Also appreciate your beautiful heart wrenching poem. So true the breath and depth of living on life’s terms. Has taught me so many things I never knew I needed to learn. We have good support from University of Colorado Neurologist and really great care givers who have heart. My children have also been so supportive and give me a great amount of rest when needed. We are into our 12 year with this diagnosed disease and my husband is still walking.( Thanks be to God).
Keep up the good work! And thanks again for sharing
My sister has CBD 
So Fast...
Hi, I'm Bill
Is there something else we should be doing?
An idyllic afternoon... 
