What is Cortical Basal Ganglionic Degeneration?
CBD is a very rare brain disease. It's so rare in fact that the doctor's looking after my Nan don't even know about it and they're relying on the fact's from my granddad. CBD is caused when the natural protein in our brain, known as tau, doesn't break down enough. It causes clots in the brain, killing and damaging the cell's. It affects not only the brains surface (cortex) but it also affects deeper down in the brain, know as the Basal ganglia, hense the name CBD.
Diagnosis:
There is no one way to test for CBD. Patients are put through many test's and thing's are ruled out. They often look for things such as Motor Neurone Disease (ALS) and Parkinson's first. They will rule out diseases such as these and thing's such as strokes before they can diagnose them with CBD.
Symptoms of CBD:
There are quite a few symptoms of CBD and they're taken very seriously. They consist of:
- Struggles Swallowing
- Struggles controlling limbs
- Struggles talking
- Memory problems
- Muscle Stiffness
- Slow and slurred speech
- Balance is off
- Lack of Coordination
The symptom's tend to develop over a long period of time.They tend to find that one limb will become uncontrollable first on one side of the body and over time it will spread to several limbs.
Complications of CBD:
CBD causes many complications due to the brain cell's not being there anymore.In my Nan's case, CBD has meant:
- She has to be fed through a tube, known as a Peg. This is because she is unable to swallow food's due to the muscles in her mouth being attacked. It also mean's she's unable to drink properly and tend's to drink via a swab. This is just a little sponge that get's dunked in her drink that she has to suck on.
- She can't stand on her own without the help of people. Because her muscles are wasting away and getting attacked, it mean's her balance is very off. If she was to try and stand by herself, she would most likely fall over causing broken bones and further damage.
- Violence. Following on from the dementia symptoms, it often causes my Nan to become violent. She can go from a fantastic mood to telling everyone to f*ck off and leave her alone withing 2 seconds.
- Due to the clot's in her brain that CBD is creating, it gives her a higher chance of contacting Phenomina, which can be deadly in normal circumstances, let alone this one.
Treatment:
There is currently no treatment for CBD. Once you have CBD there is no cure for it. There are many tablet's that can make it easier to deal with. For example, tablets can help with
- Memory
- Muscle Stiffness
- Pain
- Sleep
Due to the nature of the disease, it can make it very difficult to administer the tablet's at times.
Rate of developments:
Doctor's say that from first symptoms,the life expectancy for someone with CBD is 6-8 years.Symptoms tend to differ in speed from person to person. From my personal experience, One month i was at my Nan's, she was able to hold a cup and drink alone, she was able to make a drink, talk, walk, go to the toilet alone etc. After a month of not seeing her (which is rare for me) she had completely gone downhill. She was no longer able to walk properly, drink, talk or even pick thing's up. Within a couple of day's she was admitted into hospital, where she has been ever since. We've been quite unfortunate with how quickly thing's have progressed but it's not the same for everyone.
What care is needed:
People with CBD need very intense care. They need something that is known as Palliative care. What this basically mean's is they need care to work around the problem. Since they can't cure it, they need to care that can make it a bit easier and more comfortable to live with. My granddad had been my Nan's main carer on a day to day basis but due to the rate of development, he's not longer able to care for her alone. She need's 24hr care from specialists.
Another thing that CBD patients have to go through is therapy. There are 3 kinds of therapy they have to endure including:
- Physiotherapy- This is therapy that helps deal with the physical side of the disease. Due to muscle stiffness and uncontrollable limbs, physiotherapy is really vital to patients with CBD. It help's to keep their muscles from completely locking up and becoming uncontrollable.
- Speech Therapy- Speech therapy is also key. It help's them to improve their speech and talk a lot better. I've personally noticed a big difference thanks to psychotherapy
- Occupational Therapy- Occupational Therapy is less of a physical therapy. They identify the problem's that you're having and they help you to plan a goal on how to make it easier in the future.This is used more towards the earlier stages of CBD when everything is a bit more manageable.
CBD has been linked to genes but the likely hood of it being heredity is very slim. CBD is such a niche thing that has completely blow up mine and my family's lives. It's very expensive and very painful, not only for my Nan but for my family also. We're trying so-hard to get out of hospital for 1 last Christmas together because it's highly unlikely she will be with us next year and if she is she won't understand what's going on.
I've set up a Just Giving fund-raiser page to try and raise some money for my Nan's care. If you have any money you can donate then please do. You can donate as little as £2 and it could really make our lives a heck of a lot easier. If not then please, take the time to share it. Two seconds of your time could give us 2 million more seconds of her time
Thank you
x
Just Giving Page:
https://www.justgiving.com/crowdfunding/charlie-nichols?utm_id=60&utm_term=pXYKzKnaA
