Issues Arise

8/15/11
This past Saturday Bernie told me he was having a hard time seeing, things were blurry. He said he noticed it about a week after the injections, so is this a side effect? I did some research and it is really not a prominent side effect although there are some that state it could be, mind you most of these reviews were from people have cosmetic surgery. Blurry and double vision are considered a symptom of Progressive Supranecular Palsy so is this just a progression of his condition that coincidently came on after the injections? I’m not sure.

Progressive Supranuclear Palsy
Symptoms;
The most frequent first symptom of PSP is a loss of balance while walking. Individuals may have unexplained falls or a stiffness and awkwardness in gait. Sometimes the falls are described by the person experiencing them as attacks of dizziness.
Other common early symptoms are changes in personality such as a loss of interest in ordinary pleasurable activities or increased irritability, cantankerousness, and forgetfulness. Individuals may suddenly laugh or cry for no apparent reason, they may be apathetic, or they may have occasional angry outbursts, also for no apparent reason. It must be emphasized that the pattern of signs and symptoms can be quite different from person to person.
As the disease progresses, most people will begin to develop a blurring of vision and problems controlling eye movement. In fact, eye problems usually offer the first definitive clue that PSP is the proper diagnosis. Individuals affected by PSP have trouble voluntarily shifting their gaze downward, and also can have trouble controlling their eyelids. This can lead to involuntary closing of the eyes, prolonged or infrequent blinking, or difficulty in opening the eyes.
Another common visual problem is an inability to maintain eye contact during a conversation. This can give the mistaken impression that the person is hostile or uninterested.
Speech usually becomes slurred and swallowing solid foods or liquids can be difficult.

I will say the injections have helped with the involuntary closing of his eyes so I am pleased there but if blurry vision is a side effect Bernie will have to weigh the pros & cons and make a decision.
A new issue that has come to light is the inability to lean his head back. While taking a drink I noticed that he was having a hard time getting the 1/3 of the drink down, I said to him lean your head back a little and he said I can’t! So I tried to make him do it several times but he couldn’t. I have been putting drops in his eyes this past weekend hoping it might help with the blurriness but he can’t lean back to receive the drops, he needs to lay down to do it. I know we all get a little stiff with age but I think this is more a symptom of his condition then aging.

Well I need to sign off for now but I am hoping I will have some real time soon to report other things, I want to get all I can down in writing because when you live daily with the ins & outs you tend to not notice things or once noticed you consider them the new norm and don’t think to mention it to doctors, or family members.

I am trying to keep Bernie’s family updated on what is happening, however with everyone having their own issues to deal with I sometimes feel like I should keep Bernie’s issues to us. It is a dilemma to be sure….. I want them to know what’s going on so they can make decisions on how they want to approach spending time with him and I want them to know that even though Bernie is handling it so well that he is struggling inside with what is happening to his body. A man who always and I mean always took great pride in keeping in shape and working out and playing sports, and then to be hit with this depilating disease has taken both a physical and mental toll on him. I don’t want anyone to have regrets on should have could have but didn’t.