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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“I continue to be inspired by those who share this fight with me” – PatientsLikeMe member Doug shares his journey with HP

Posted January 9th, 2015 by

Meet Doug. He’s part of the pulmonary fibrosis (PF) community on PatientsLikeMe and is living with a condition specifically known as chronic hypersensitivity pneumonitis (HP). It’s similar to other types of PF, but also has its differences. We caught up with Doug for an interview to help spread the knowledge about these two conditions, but learned so much more. He shared what it’s like to live with HP, how he uses PatientsLikeMe to learn more about his own health and how the community has helped him to stay inspired in his fight.

Can you share a bit about your chronic HP? Can you explain to our blog followers how it’s different than IPF?

I believe the major difference is that with hypersensitivity pneumonitis there is a cause. If I’m correct there are three forms: acute, subacute and chronic. All are caused by exposure to an antigen that may or may not be identified. In my case, I have chronic hypersensitivity pneumonitis (HP). My specialists have determined that it’s not necessary to identify the antigen since my condition is chronic and cannot be reversed.1

What was your diagnosis process like, and how was it different than what you’ve heard about getting diagnosed with IPF?

Of course I can’t compare how it ”feels” to have HP vs. IPF, and I’m no expert, but I will give you my version of the difference between HP and IPF. First, both are forms of pulmonary fibrosis. With HP, the fibrosis forms primarily higher up in the lungs, and IPF forms in the lower part of the lungs. Air trapping occurs in cHP but not in IPF. I have no idea how this impacts me as a patient, but I’ve included a comparison from Dr. Jeff Swigris.

Apparently another difference is that HP fibrosis is caused by inflammation, whereas IPF is caused by different forms of pro-fibrotic influences. Generally speaking, specialists recommend an anti-inflammatory drug (prednisone) and/or an immunosuppressive such as azathioprine, mycophenolate, cyclosporine, or cyclophosophamide. In my case, my doctor and I agreed on a course of mycophenolate. Initially, it had significant side effects, such as severe fatigue, poor sleep, weight gain and depression. I switched to Myfortic, which is a different brand of mycophenolate, and now the side effects are minimal. I have much more drive and I feel much better! It’s still too early to tell if it will help. My concern is that my pulmonary function test (PFT) results have dropped in the last four months, so I’m concerned that I’m deteriorating. At the moment, I function almost normally. I have a walking routine that includes a 7.5 K walk, which I can complete in an hour. I now require supplemental oxygen for long flights, but I still consider myself lucky!2

You frequently use the InstantMe and Quality of Life tools on PatientsLikeMe – why do you like to use these to donate your data?

I find it’s good to have a record of your health pattern. This can include how you feel daily as well as a record of the medications I’m on. I print out portions of this for my doctors’ appointments and it helps me be well prepared.

How have others in the HP and IPF communities on PatientsLikeMe helped support you on your journey?

My biggest concern is that HP is the “poor cousin” in the PF family! There are very few of us online and therefore it’s difficult to learn as much as I’d like to! Nevertheless, I have learned a lot about shared aspects of PF such as patient care, oxygen therapy and lifestyle issues. I continue to be inspired by those who share this fight with me and I’m always grateful when I’m able to learn something that will help me.

I’ve always told my wife I plan to die of old age! One of my strengths is that I have a great attitude. Participating in platforms like PatientsLikeMe helps me not only learn more, but it fortifies my attitude!

Many people may not know about rare conditions like HP and IPF. If there was one thing you thought someone who doesn’t have a clue should know about HP, what would it be?

That’s a tough question because there is so much more I need to learn before I feel I can address this question. I suppose the key with HP is that if you have developed acute or subacute forms of the disease you may be able to arrest the fibrosis before it progresses too far.

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1 http://nationaljewish.org/Participation-Program-for-Pulmonary-Fibrosis/Community/Blog/Participation-Program-for-Pulmonary-Fibrosis/November-2013/What-is-Chronic-Hypersensitivity-Pneumonitis

2 http://nationaljewish.org/Participation-Program-for-Pulmonary-Fibrosis/Community/Blog/Participation-Program-for-Pulmonary-Fibrosis/November-2013/Some-of-the-nuance-about-cHP