For those who care for someone with Parkinson's disease
[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]
You are not logged in


Topic watching someone new join the flock Go to previous topic Go to next topic Go to higher level

By olpilot On 2016.01.17 02:03
We are here in Az and the owners of the campground are facing something we have all faced, the diagnosis of pd. The owner J has so many of the symptoms, resting tremors, speech you can barely hear, balance problems, and on and on, but the VA will not diagnose it. I remember very vividly how it was to suspect but not be told. We talk to them when they want and answer questions when they ask but do not try to tell them what it is or isn't. Not our jobs but they are afraid as we all once were, and sometimes still are. I can see the fear in his wifes face when they try to figure out what is going on. Why is it so hard to give the pills that may change their lives or show it is not pd. He is a bit older than me but say he isn't far enough along. At our ages the effectiveness of sinemet is long enough that 10 or 12 years from now maybe there will be a cure or at least a better treatment. It is hard to see how much it affects them and they see I can do pretty good as long as I stick to my regiment. We fought so hard to get some kind of diagnosis why do drs resist so hard? The diagnosis is never good news but it sure as hell beats no news.

By moonswife On 2016.01.17 08:28
olpilot, this sounds like a time for a second opinion. Maybe at a teaching hospital attached to a medical school. Sometimes they can be contacted and are much more affordable. If your suspicions are spot on, then he can take that diagnosis to the VA and they will likely treat "J" differently. I can imagine the fear his wife goes thru. To have you cross his path of life was a blessing in disguise for him. Be well.

By bksquared On 2016.01.24 23:29
The Mohammed Ali Center is in Phoenix about 90 minutes away. Medicare should cover the cost of a second opinion. Sometimes help is close by but it takes someone to make a gentle suggestion.

By Trusting On 2016.02.03 20:44
My veteran husband had been treated for all the different symptoms of PD but his Dr. hadn't put it together. As a fellow veteran was talking to my husband on the phone about PD being added to the agent orange disease list, I googled it while he was on the phone and he had over 1/2 of the symptoms. I made an appointment with his primary care giver, told her what I found and she looked at me and said, "I think you are right". She sent him to the neurologist for the diagnosis. I'm telling you this so that they might google his symptoms and do the same thing. The older I get the more I learn you have to tell the doctors what is wrong or what you need. You would be doing this man a favor if you told him what you suspect. And if they don't take it well, at least you tried. What have you got to lose?

By olpilot On 2016.02.03 23:42
We have actually spoken to him and his wife at great length, there is a close friend of his here with pd and we had a mini support group type meeting. He is working to get a diagnosis as soon as possible. As an aside he was sitting in the community room one afternoon watching TV and a fellow was sitting there with tremor and Jerry asked why he was shaking, the fellow said because I have Parkinson's just like you. He noticed the tremor just as we had. I hope he gets an answer soon.


© 2003-2017 MyParkinsons.org · Privacy Policy & Terms of Use
Published by jAess Media. This website and Forum is sponsorsed by people like you