Was wondering if there as a association for ones that have CBD
My sister of 70 has it , would like more information on it, with hands on.
These diseases are hard to handle.
But know there is a better place waiting for them, and they well be healed . Praise God .
Dear Sislin,
My husband had CBD. We are in Canada. I don't know your country, but I found that there are so few patients who have CBD, that the only associations/groups that knew what it was are the PSP associations. The PSPA - the PSP Association of the UK seems to me to be the best, and their information is the most thorough. If you are in the UK, they may be able to identify a local support group for you. They have a 1-800 number there, I believe and you could call them. If you are in the US, there is the CurePSP Association which is equivalent. They try to hook you up with local support groups. Look at their web site.
If you are in another country, you may find a local Parkinson's group to be a little bit helpful. It is not the same disease at all, but the group leader MAY be interested enough to look into CBD and try to understand it.
Good luck to you! XX
Anne G.
what is CBD?
CBD is Corticobasal Degeneration. CBD for short. It is where we make too much protein in our brain, called Tau, which attack’s certain brain cells. This starts with the loss of the use of a limb. In my case this is my right arm, but it goes on to disable other parts of the body, such as other limbs and your ability to swallow. At the moment there is no cure, but research is being carried out. If you wish to know more about this dreadful disease you can find details on the NHS website, under Corticobasal degeneration. I hope this helps.
My wife has CBD and I have found this to be the best site. There is loads of information. There is a site in the States CBDG which I follow but mostly I discover how blessed we are in the UK with the NHS and the PSPA.
Anne G's comments are very helpful, she helped me a lot when I first joined the site. There is a freephone number for PSPA in the U.K. 0300 0110 122 you can also email them at helpline@pspassociation.org.uk
Good luck & God bless. Ken.
Hi Sislin!
Lo siento, PSP ha entrado en tu familia.
Hay varios tipos de PSP.
PSP-CBD (o PSP-CBS) es diferente de su "primo" PSP-RS más frecuente pero comparte muchos síntomas y problemas que son comunes a ellos. Nuestro caso es PSP-RS.
Las sugerencias de mis colegas de "chat" son sabias y se basan en sus diferentes experiencias. En mi caso han sido de mucha ayuda.
Esta enfermedad se manifiesta de manera similar pero diferente en cada paciente. Los participantes en chats como este ofrecen prácticas y soluciones para aprender y, a través del método de "prueba y error", logrando una calidad de vida con momentos interesantes a pesar de todo.
Por correo privado, le envío nuestras experiencias particulares en PSP-RS que esperamos le puedan ser útiles.
Abrazo y suerte.
Luis
Dad had CBD, in the US. I cared for him up till the last year then he went into a nursing home. We have a support group for PSP/CBD not to far away but Dad would never attend.
Ron
Hi...my beautiful,funny,smart big sister Linda is also a victim of this awful disease..she was diagnosed 4 years ago. It's her left brain that Is dying...her diagnosis also includes alien limb. I'm finding a few more people are just hearing about CBD w/ alien limb. She no longer has use of either hands,she shuffles instead of steps,her speech is halted..she still eats small amounts ( she has to be fed) incontinence is very bear,she will let you know when to take her,shes hallucinating after 5pm ( sundownig for sure) but she is sill IN there...she does crack herself up when she mixes up words,her vision has really,really changed. Her husband of 35 years is her caregiver at home..he is a saint!! I'm so sorry you're going through this awful journey...hugs to you!!! I'm her baby sister and am on 2 Websites ..that helps me...read everything you can to understand!!!!
Hi robiric,
Interesting what you say about sundowners. My husband has CBD but for the longest time the neurologist would not rule out Alzheimer’s as a dx. He did not have the sundowners syndrome that is frequently a symptom of Alzheimer’s, but I gather they are both tauopathies. (Something like: tau in the back of the brain more likely to be Alzheimer’s tau in the cerebral cortex, more likely to be PSP or CBD?)
Anne G
Dear Sislin,
I am sorry that you, your sister and your family must face this illness. Knowing that you are there for her is very comforting. May I ask where your sister lives (country)?
My husband has had a diagnosis of CBD since 2012. He is now 73 and neurologists believe he has been dealing with it since 2006, when he was 61. It is worth mentioning, again, that these neurodegenerative conditions are "presumably" diagnosed. Since an examination of the brain, post mortem, is the only way to conclusively know what the condition was, it's helpful to remember that diagnoses and recommendations for care can change. Our medical experience here in the U. S. has been a positive one. The frustrating part was the early years when we both knew something was wrong, but local internists keep testing him for an atypical Alzheimers. However, once we got to a major medical center where neurologists see CBD, PSP and MSA with some regularity and have broader experience with these rare disorders, we received good counsel and he began some medications and therapies (physical therapy, speech, and swallowing). There are no magical cures, unfortunately, but I do think that the treatment he has received has helped to slow his decline. Not sure whether this is relevant to you, but the Veterans Medical Center in our area has been extremely helpful as I have worked to adapt our home to his condition. This website is an amazing resource for caregivers; I hope you find it so.
Marilyn
As mentioned in a previous post, the PSPA helpline is a free number to call, and they have information packs, with the various stages, also they describe the difference in PSP and CBD, they also have a gap version for professionals who register, I have told our surgery to order one, my husband has been diagnosed 11 years with CBD, so we are along way down the track now, but his symptoms have plateaued recently, hope that is spelt correctly 😆
Janet
There are a couple of CBD groups on Facebook :
Sister had CBD
CBD decline
CBD
CBD Pops
Cbd
