Re: Hello to our new friends

[Guest guest]

Thank , i have learned so musch from just being part of this group,

myna

>

> Let me begin be thanking Mark Weber for the hard work and determination in

> setting up this forum for all of us to use. It has been a long time coming and

> I feel certain that it will benefit all of us. I encourage everyone to spread

> the word and get others to sign onto this program.

>

> My name is Doug Brand and I live in St. sburg, Florida with my wife of 32

> years Flora and our daughter Kelley. I am the Advertising Art Director for the

> St. sburg Times and have been with this organization for over 16 years.

>

> About five years ago, Flora was diagnosed with primary lateral sclerosis. That

> followed a long succession of tests, scans, MRI's and all the other routines

you

> are very familiar with. At first blush, our neurologist was hedging towards

> ALS, which scared us to death and broke our hearts. However, Flora was not

> presenting some of the typical symptoms associated with that killer disease

and

> finally it was determined that her condition was PLS. All the doctor could

tell

> us about the disease was a few paragraphs in a Merck manual. It was then that

I

> set out to find my own answers to the many questions we had. The internet has

> been my best source of information and over the years I have been fortunate

> enough to locate some of you as well as Mark. They have been a great source of

> encouragement and comfort as we worked out way through the difficulties and I

> hope I have been the same in return.

>

> I have discovered that no two PLS patients are alike. Flora has a very severe

> case of it and is riddled from head to toe with symptoms that make her daily

> life miserable. She has declined steadily over the past five years, but thank

> God, remains strong and focused on maintianing as much independence as

possible

> for as long as possible. She has difficulty speaking, can no longer walk

> unassisted, has very low stamina, developed a spastic gait and has constant

> aches and pains in her extremities. She also occasionally chokes on food and

> liquids.

>

> I wish I had more time to spend with you, but we are fast approaching the

first

> of many deadlines associated with getting a daily newspaper out. I'll be back

> and hope to hear from you in return. Remain brave and focused....we are in

this

> together. Kind thoughts to all of you...Doug Brand

>