Dear everyone.




It's been a very long time, since we've seen many of you.
My mother and I would like to go back to church and hope that with this blog, our return will be uneventful and as free of stress as possible. Please understand, we know people care and are concerned. But for people like us, who have been away from church for so long and who are living in a difficult situation, the thought of going to church and having to answer a lot of questions is a very stressful prospect.



I hope you will carefully read this blog and do a little research on your own, so as to not have to ask many questions. As well as, so that you might be careful with your comments, advice, or recommendations. Believe me when I say, we've tried so many things in the hope that it would help my mother, short of bringing in a psychic! There is no cure nor treatment. We accept this and ask that you do so as well.

My mother's current condition:



She has been diagnosed with Progressive Supranuclear Palsy.

http://www.psp.org/ Click on that URL and you can learn about it.

Simply put, she has many of the same symptoms of Parkinson’s disease.

But, there is no cure, no treatment and no known cause. It is a progressive disease and it apparently progresses very quickly.
She also suffers from lumbar and cervical stenosis, and fibromyalgia.

All these things together, cause her the following:
The pain from the stenosis prevents her from walking even the shortest distance. When she does need to stand, she can no longer walk but can only shuffle along with the help of her walker.
The fibromyalgia causes her pain all over her body and she is very sensitive to touch.
The PSP has hindered her coordination, mobility, balance, vision, speech and breathing. Her speech is slurred and sometimes she has trouble taking in enough air to utter a sentence.

She has trouble holding objects such as a book, magazine, bowl, utensil, pencil/pen, phone, etc…


Her legs and left arm jerk and move on their own, similar to restless leg syndrome but worse. Some nights she can't sleep because her legs won't stop jumping and the medication doesn't always help.


Her neck gets stiff often and her entire body periodically stiffens and she has to get up to try to loosen it. Her left arm and hand are pretty much useless for anything except grasping tightly. Her muscles are strong and it is my belief that each time her body stiffens, since her muscles contract, they are strengthened.
She chokes and coughs often when she eats, drinks, laughs too much or sometimes just when breathing. Since this progressive disease affects her muscular coordination, her lungs, esophagus closure and throat are affected. Resulting in frequent choking and coughing. Even the coughing is difficult. She has to try to force the cough and it is hard on her throat.


About two years ago we bought a scooter for her, but as her coordination has deteriorated, she is now unable to use it at all.
Her stamina is low and she gets tired very easily. With all the effort she needs to put forth to do the simplest things, it’s no surprise. For someone who has always been so independent, it is hard to find yourself dependent on others, and unable to go wherever or do whatever you want.


Please keep in mind, this is NOT a disease of the elderly. It is a disease which can affect people as young as 30. Those of you who are over 70, and are still independent, count your blessings!

Inspite of all these challenges, her sweet spirit is undiminished. Her fun sense of humor is intact and her emotional strength is still my rock. She speaks slower and is sometimes hard to understand, but when you do figure out what she is saying, it is usually something funny or kind.
I go thru all this with her, not quite as strong and am thankful for her strength on which I can lean. I help her with the physical and she helps me with the rest.

We are thankful to have a lady who comes over each weekday morning from 9am-1:30pm, to prepare and serve my mother's breakfast and lunch. She does her laundry and other small cleaning or organizing jobs. But after 1:30pm. my mother is alone until I get home anywhere between 6-7pm. I try to go to the store or run errands during the day or on vacation days, so that I can be home as soon as possible after work.

Also during the time she is alone, it is dangerous for her to answer the door. If you would like to visit, please do so during the hours noted above and please call first. While it's nice for someone to drop by without prior notice, for someone like my mother, it could be disastrous.


On weekends I stay home as much as possible, so I can help her with anything she may need. Yet also because I want to spend time with her and keep her company.

Recently, we installed a Medic Alert system. When she is alone, she wears a necklace with an emergency alert button, in case something happens and she needs help. This is very helpful, but does not replace my being with her. So I try to spend as much time with her as I can.



Sincerely, it is my hope that you read this with a heart full of charity and an open mind. I hope we can worship with you at church one day soon. Until then, it would be nice to see you! Come visit soon!



Fondest regards,



Guadalupe Gonzalez