My Journey with a Mitochondrial Disease - "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV
Day by Day with a Movement DisorderPosted on by DB
The PD Warrior recently did a post about the high incidence of Fire Fighters with Parkinson’s Disease. Where the occurrence of Parkinson’s Disease among the normal population is something like 3 to 4 per 1,000 people, the incidence among firefighters, according to the information on this blog is that these brave men and women, who are exposed to all sorts of toxic gases and materials during their daily work environment get Parkinson’s at a rate of 30 per 1,000. Ten times the normal number!!! And that’s just for PD. Add to that the number with other types of Neurological Disorders and this is flabbergasting, to say the least, and should receive more attention than it does. In all my reading about PD and other Movement Disorders, I have never noticed any mention of firefighters.
So here’s a plug for a great site (although my brain has trouble with the “firey” style of the blog) that everyone should read!
Day by Day with a Movement DisorderPosted on by DB2
I have been a member of PatientsLikeMe for some time now, and am convinced that it is one of the best sites for people with all kinds of neurological diseases to join, from those with ALS, MS, to various forms of Parkinson’s Disease. They have split off a new forum for those Parkinson’s members who have been diagnosed with MSA. Multiple System Atrophy is a particularly aggressive form of the Parkinson’s like diseases, with some symptoms that Parkies don’t usually have.
I wrote recently about one of my PLM friends whose diagnosis was recently changed to MSA, and she is blogging about her experience dealing with this devastating change of direction. She’s doing a great job of letting the reader see the physical and emotional trials she is experiencing.
So, I’m calling for all those who have been diagnosed with MSA to take a look at PLM and at least consider joining and participating. And while you’re at it, go give B’Nana an encouraging word. I’m sure she can use it!!
Day by Day with a Movement DisorderPosted on by DB4
Everyone on the PatientsLikeMe forum is grieving along with one of our dear Parkie friends, btrflynana, who has just had her diagnosis changed to MSA.
Multiple System Atrophy is the big gun version of Parkinson’s like disorders, and does not have a good prognosis at all. Most people only live about 9 or 10 years after diagnosis, and much of that time is in severely compromised health. I have been so hoping that she would have good news, as I did when my diagnosis was changed, but that is not to be.
She has a wonderfully sweet nature, and wrote a sad and yet determined post about the new diagnosis this morning. All her family are there to help her through this horrible grieving time, and her online friends are hurting for her and grieving for her, too.
My heart goes out to her and to her family.
“Have mercy upon me, O LORD; for I am weak O LORD. Heal me; for my bones are vexed.”
Psalms 6:2 KJV