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Parkinson's and Agent Orange
I was in Vietnam for 21 months, and flew hundreds of missions on C-130's and C 23's. I remember falling on floors of planes as they were slippery where drums of agent orange had leaked and some had sprayed agent orange. I was also at Camp Lejeune, for two years. I'm pretty sure I have Parkinson's, and was described Parkinson medication to try. Another person told me I should not take it unless I had a lot of pain. The reason for this is I have PTSD, and I was told that this medication can cause some pretty bad effects in people with PTSD. My neurologist was upset, and told me I should see a movement specialist because of my refusal to take the medication. It takes so long to get to see a neurologist. I would love to find a neurologist who is also familiar with agent orange.
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Hello @airdelivery and welcome to the PD support group on Mayo Connect. I'm sorry to hear that you feel in such a dilemma regarding treatment for the Parkinson's symptoms. You said in your first post, "I was told that this medication can cause some pretty bad effects in people with PTSD." I'm just wondering if that information came from a physician or other medically trained support person?
As you mentioned that you have PTSD, I'm thinking that you have (or had) a connection with a mental health professional. If so, I would consider talking to that person to inquire if the PD medication that you have been prescribed would have an adverse effect on PTSD. Do you have mental health professional, that you can talk to about this?
We have a discussion group where other veterans have discussed their exposure to Agent Orange and Parkinson's. Here is a link to one of those discussion groups,
https://connect.mayoclinic.org/discussion/parkinsons-agent-orange/
Here is some general information about Agent Orange and health problems from the Cleveland Clinic website:
https://my.clevelandclinic.org/health/symptoms/24689-agent-orange-effects
Regarding finding an appointment with a movement disorder specialist who might have experience with patients with Agent Orange exposure, I'm wondering if the VA would have a neurologist with this experience? If not, you might consider calling a health institution that is considered a Parkinson's Center of Excellence. Mayo Clinic has three locations where they treat PD. Here is a link with information for obtaining a Mayo Clinic appointment, http://mayocl.in/1mtmR63.
If you are not able to be seen at Mayo Clinic, please consult The Davis Phinney Foundation, to see where there might be a PD Center of Excellence nearby. Here is a link to their website, https://davisphinneyfoundation.org/. You will see a toll-free number on the top of the first page of the website. If you call them, they may be able to assist you in finding a movement disorder specialist who can help. Please know, however, that it will take time to get an appointment with a specialist.
As this is your first post on Mayo Connect, please share as you are comfortable doing so, how long ago the PD symptoms began. What is the most difficult symptom you are experiencing right now?
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4 ReactionsThank you so much for this information.
Mike
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1 ReactionPlease post again and let me know how you are doing.
Airdelivery as with any medication there is always a chance for none, minor, major, and severe side effects to any medication. I’ve been exposed to pesticides, cleaning solvents, exposure to lead/lead particles, and burn pits over a 22 year timeframe in the military which caused me to get Parkinson’s. I had it for 12 years before properly being diagnosed at the age of 45 in 2015. There has only two meds that I side effects from which were Ongentys(Capone) and Rasagiline that I took for PD. Regular Sinemet or its derivatives seldom cause serious side effects, but each person is different. I’ve have Chronic PSTD and the PD medications I’ve taken over the years haven’t affected my PTSd symptoms at all. I usually fall into the 1-2% with rare side effects with a couple of medications. You won’t know until you take the medication or try a test called genesight. Go to their website and a provider who conducts this testing in your area to see what medications are best to take for MH. It’s two check swabs then sent to a lab for testing. It is based on your genetic makeup. My son has had this done and it works wonders. Good luck to you.
Woody
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4 ReactionsMy husband was in Vietnam and exposed to Agent Orange and has Parkinson's. The VA now takes responsibility for service members with this background and will provide medical care. My husband also has PTSD and I was concerned, like you, that Sinemet would make his PTSD symptoms worse. He recently started taking it and his physical symptoms have improved, with less tremor and more physical strength. Physical Therapy has helped too.
In my personal, professional experience, the best help for PTSD is a trained therapist who combines hypnotherapy and EMDR.
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3 ReactionsHello @jojok and welcome to Mayo Connect. I appreciate you sharing about your husband's experiences with Agent Orange, PD and PTSD. It really does become a complicated health issue.
We have some other discussions which you might find helpful. Some of them are older so there may not be a lot of recent posts, but I'm sure you will see what other Vietnam Vets are dealing with. Here is a link to one discussion.
--Tremors and post-polio syndrome and agent orange
https://connect.mayoclinic.org/discussion/essential-tremors-and-post-polio-syndrome-and-agent-orange-exposure/
You say that your husband's symptoms have improved with Physical Therapy. What are his most troublesome symptoms now?
My husband has total body shakes. Has anyone experienced this?
My husband is a Vietnam Vet with PTSD. He also was exposed to Agent Orange. He was diagnosed with Parkinson’s disease and takes Levodopa for treatment. I have given him Xanax to help with them.
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2 Reactions@maggiejojo - Hi. I wanted to let you know I moved your post here so that you could talk with others who have chatted about Parkinson's and Agent Orange:
- Parkinson's and Agent Orange https://connect.mayoclinic.org/discussion/parkinsons-agent-orange/
Please meet @hopeful33250 @jojok @angood1969 and others here who may have experienced, seen a loved one experience or read about the total body shakes you mentioned your husband has had.
Is the medication calming the shakes at all? What does his doctor say about these shakes?
@hopeful33250
We live in Texas and have UTSW and Baylor Scott & White facilities available. Unfortunately, my husband doesn’t want to participate in any programs for PTSD, etc. Thanks for your reply.