Progressive Supranuclear Palsy

I am writing about this disease because I have had experience with it, and feel that a lot of people do not know about it. I was a caregiver for my husband and it only took about 4 years before he succumbed to this disease. If you remember Dudley Moore, you will know that he also died of this disease, and everyone thought that he was play acting a lot of the time, but actually he was going through all the motions of the disease.

I hope this will be of help to some of you, if you have a loved one and want a diagnosis from your physician, especially if they have Parkinson�s disease, please mention this one, and see if they can test for this one also. I am making a list to the best of my knowledge of what I remember happened.

Edwina (Angel Jade)

Progressive Supranuclear Palsy is a rare degenerative disease of the brain. The name Progressive Supranuclear Palsy, shortened to PSP is progressive. It effects parts of the brain that are pea sized structures and above the nuclei (Supranuclear) of the brain and effects the nervous system that controls eye movements. Palsy means weakness. It is sometimes called Steel-Richardson-Olszewski syndrome, named after 3 scientists who first discovered it in 1963.

It is a disease that is all over the world, and usually develops later in life. In fact it could start as early at the 40�s or 50�s but is more predominant in men than women, and usually starts around the age of 60.

It has similar symptoms and can be diagnosed as Parkinson�s disease which is a more common movement disorder, so some physicians who have not had patients with this disease, can misdiagnose people. A specialist in Movement Disorders is a physician who deals a lot with this disease.

Unfortunately there is no cure or effective help for this disease, although they are working on it. There has been a lot of research on the disease, and they are beginning to understand the brains functions a little more. A lot of patients donate their brains to the PSP medical science to find the rare gene. As far as I know, they have not found it as of yet.

The causes are unknown, and rare cases run in families, but it really has yet to be proven.

The symptoms progress very slowly, and usually start off with eye movements. The inability to look upwards and peripheral vision is taken away. It is a good idea when that starts, if the patient is a driver, to take away the license. Double vision and controlling eye movements, and light sensitivity and unable to keep straight eye contact are another of the symptoms.

There are headaches, joint pains, fatigue, dizziness, and depression. The gait (walking) is very stiff and awkward steps when taking steps. The foot might be lifted higher because there is no sense of balance, and the vision is impaired. There is a balance problem, where the patient will fall backwards for no reason at all, and find himself/herself on the floor.

• Movements are always very slow, and clumsy.
• There are personality changes.
• Memory loss
• Slowed thinking
• Angry outbursts
• Slurred speech
• Chewing and Swallowing become very difficult
• No facial expressions
• Muscle spasms
• Inability to hold urine and there are also bowel problems. This occurs in the last stages.

All these vary in person to person.

Useful Links

NINDS National Institute of Neurological Disorders and Strokes
Cure PSP