3 posts tagged “Jeff”

Meet Jeff from the PatientsLikeMe Team of Advisors

Posted January 20th, 2016 by

Say hello to Jeff, another member of your 2015-2016 PatientsLikeMe Team of Advisors. Since he was diagnosed with Parkinson’s disease (PD) 20 years ago, Jeff does his best to stay active—in both exercise and advocacy.

Keeping up with his two teenage daughters is challenging enough, but when he’s up to it, Jeff also golfs, plays tennis and practices Tae Kwon Do (he’s a 3rd Degree Black Belt). And as an advocate for PD education, he’s participated in a panel discussion sponsored by Beth Israel and Deaconess Hospitals and given a presentation at Harvard Medical School.

Here, Jeff opens up about his biggest frustrations and encourages other patients to stay active and engaged.

What gives you the greatest joy and puts a smile on your face?

I have always enjoyed living life day by day and not taking myself too seriously. I believe that there many things that can be serious (i.e., health conditions, living conditions, world economics are a few), but people’s basic construct should be less serious. For example, watching my two daughters enjoy daily life at home puts a smile on my face.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

A corollary to my not taking myself too seriously is my belief that the vast majority of people in a 1 to 1 relationship are compassionate and willing to learn about the day to day challenges of living with a disability. The challenge is keeping that compassion as we move from the individual to groups of people, larger organizations, etc. As groups grow in size, the compassion shrinks almost to nothing.

The one thing that I have the greatest frustration with is the frequent difficulty I have communicating with other people. My speaking ability can be so poor that I perceive my audience questions my mental faculties.

How has your condition impacted your social or family life?

My world in some ways has become smaller. My wife and I don’t go out as frequently as we once did, nor do we entertain at home as much. In either case, going out or entertaining at home has become a bigger responsibility for my wife. One of my PD off-periods can occur at any time and more occurrences happen during the evening than during the day causing additional work load for my wife.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

The voyage of Life continues. It is better to be an active participant than a sideline observer.  Get engaged, exercise, do things. Don’t sit at home feeling sorry for yourself.  Always take the extra step.

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“You can get better” – PatientsLikeMe member jeffperry1134 shares about his journey with PTSD

Posted February 12th, 2015 by

Many veterans are a part of the PTSD community on PatientsLikeMe, and recently, jeffperry1134 spoke about his everyday life after returning home from military service. In his interview, he touched upon his deployment to Somalia in the early 1990s, and how his memories of Africa cause daily symptoms like anxiety, hallucinations and nightmares. But despite everything, Jeff remains upbeat and reminds us that there is always hope. Scroll down to read what he had to say.

Note: the account below is graphic, which may be triggering.

Can you tell us a little about your military service and your early experiences with PTSD?

I entered the military in the Army in July 1990 as a heavy wheeled mechanic. I went through basic training and AIT at Ft. Jackson, SC. I went to my first permanent duty station in December in Mannheim, Germany. I was assigned to a Chinook helicopter unit. My unit was very relaxed and we got along well. As soon as the war broke out we received our deployment orders. We returned home in July from deployment. My PTSD was early onset after returning from Desert Storm. I experienced nightmares, depression, alcohol abuse and drug abuse. At the time I was a 19 year old alone in Germany away from my family struggling with this mental illness. My supervisors were able to help me hide my problems well and it was not discovered at that time. I feared being singled out for having these problems. Three days before it was my time to PCS stateside our company was deployed again, this time we were going to Somalia. I was told I could leave but I felt guilty so I volunteered to stay and deploy with my teammates. We deployed in November 1992 and returned in June 1993. During my time in Somalia it was rough. During the deployment my job was perimeter guard duty and body remover. During the deployment I used local drugs of Khat and Opium Poppies to control the symptoms of my illness. After returning from Somalia not only did I have the symptoms that I had earlier but now I was hallucinating hearing voices, smelling smells and seeing flashes. I went stateside a week after we returned. I went to Ft. Leonard Wood, MO in an engineer unit that was strict. I made a huge impression with my skills as a mechanic and a soldier so when I was having problems my superiors hid it for me to keep me out of trouble. I did get in trouble once after a night of heavy drinking and smoking marijuana and was given an article-15 for being drunk on duty. Before that day I had still considered myself as a career soldier and I decided then that I was not going to re-enlist. I spent the rest of my military time waiting to get out and finally July 1994 came and I was out and had a job at a local car dealership as a mechanic. After working a while I got into a verbal confrontation that turned physical with the business owner and had to be removed by the police from the dealership. After that my thinking became bizarre and very hyper-vigilant. I took newspaper clippings and taped them to a door so it would motivate me to exercise harder and be ready if I were ever in a life or death situation. At the time I was working with a great therapist and she did wonders for me keeping me stable. She convinced me to take my medications and stop drinking daily.

What were your feelings after being officially diagnosed? 

I was blown away when I was diagnosed in 1995 after a suicide attempt that ended up with me being hospitalized on a psych unit for a week. My sister walked in on me at my apartment with a loaded gun in my mouth. I was resistant to treatment or even acknowledging that I had this illness. I was linked up with a therapist and psychiatrist before leaving the hospital.

What are some of the symptoms you experience on a daily basis?

On a daily basis I usually deal with a lot of anxiety, some depression, occasional hallucinations and nightmares. On a bad day I will have sensory hallucinations with me smelling dead bodies, burning flesh or cordite. Usually when that happens I get physically sick.

You recently completed the Mood Map Survey on your PatientsLikeMe profile – what have you learned about your PTSD from your tracking tools?

I learned that my PTSD is not as well managed as I would like it. It made me press my doctor to give me an antipsychotic medication and I have a new therapist at the VA that is working hard to help me identify when my symptoms are becoming worse.

By sharing your story, what do you hope to teach others about PTSD?

I just wanted to show that you can get better and that there is hope and that they can get through it.

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