Cortico Basilar Degeneration (CBD) or Corticobasal Ganglionic Degeneration (CBGD) is a rare, progressive neurodegenerative disease that involves the cerebral cortex and the basal ganglia. It is often referred to as one of the neurological disorders that falls under the title of "parkinsonism" because as the disease evolves, a person begins to demonstrate characteristics that can be confused with Parkinsons disease. In fact there are many patients who are initially diagnosed with Parkinsons disease, only to be told "down the road" that they don't have true or ideopathic Parkinsons disease, but rather one of the "imitators," which CBD is sometimes called.
You can find information about this disease on the internet, but one of the frustrating things about being diagnosed with a condition like CBD, is that the symptoms are not as consistently similar from patient to patient, like the symptoms that most Parkinsons patients have, and the disease does not respond to the use of Carbidopa/Levodopa, like Parkinsons Disease does.
So, the primary challenge in managing this condition is the need for the patient and the care-partner to keep a watchful eye on how the medication the patient is given, changes the symptoms that the patient experiences. For example; if a medication is prescribed by your doctor, you can go to the Forms Tab and download a Symptom Tracking Chart. With this chart you can circle the time you take your medication that is supposed to improve your function, and then monitor if your ability to function improves or seems to worsen. The bonus with this approach is that you can take concrete information back to your physician or medical treatment team and show them which symptoms improve or worsen or stay the same.
There are some medications that can give more side effects than benefits. That is what you want to be able to determine. The reason why this is so important is because you need to manage these diseases. Usually there are no quick fixes for these conditions. The goal has to be to maintain the best quality of life possible, while experiencing functional changes.
For example if you are taking Carbidopa/Levodopa and have been told by your doctor that they are not sure if you or your loved one actually has Parkinsons Disease, then all the more reason for you to follow your symptoms after taking the medication to see if the medication improves your condition. If not, report it to your doctor. Let them decide whether or not to try to reduce your medication, and see what happens to your symptoms. You have to have an open line of communication with your medical providers. If the medicine isn't helping, you need to let them know, and let them advise you on how to reduce the medication and see if you feel better off the medication (or on a smaller dose).
There are different symptoms that occur with this condition, that separate it from Parkinson's Disease. A few features of this condition that are not like Parkinson's Disease would be the development of a lack of awareness of a limb (usually one arm), to the point that when a person walks, they actually may experience that they unconsciously hold one of their arms behind themselves. In fact, when you point out that their arm is not along their side, it is something that they don't recognize as happening. The separation of one arm from the rest of the body can also have a noted increase in sensation or sensitivity. Many patients feel that they have an increase in pain and stiffness in the arm that they have difficulty "controlling." Some patients will have problems controlling the movement of the leg that is on the same side of the body. Balance is commonly affected. Depression is common as well.
Go to the Home Management Tab and see if you can get some ideas as to how you might be able to improve your ability to function at home. Remember that different adaptations work for some people and others need to modify things in another way. NEVER sacrifice your safety. Always remember that SAFETY IS OUR FIRST PRIORITY. Remember that if you are having problems walking now, just think how hard it is to rehabilitate a person and teach them to walk again, when you already have a balance problem. We want to avoid falls, and if you need to use adaptive equipment to avoid a fall, like a wheelchair, walker or a type of power mobility device, it is more important to be safe than worry about what you look like..or what you THINK you look like. We are usually harder on ourselves than our friends and family are toward us. Our Goal is to help you manage this condition and have the best quality of life possible..."Now let's get going!" xo Sally
If you would like to learn more about Sally Thimm OTR/L Occupational Therapy Services visit: Professional Case Management of SWFL