50 posts tagged “patient interview”

Oceans of Hope: An interview with PatientsLikeMe member Beth

Posted March 1st, 2016 by

Beth (sailebeb) has been living with MS since 2010, but it hasn’t stopped her from leading an active lifestyle. In the spring of 2015, she joined a crew of MS patients on a sailing trip from Tahiti to American Samoa. The journey was organized by the Sailing Sclerosis project, Oceans of Hope, to change perceptions that people with chronic diseases like MS are “trapped by their condition.”

Here, Beth describes her experience onboard and what she learned about herself along the way: “Oceans of Hope is showing me I can still take chances.”

Tell us a little about yourself. What are some of your hobbies and passions?

I like to garden, both flowers and vegetables. Started glass fusing after I got MS. Love to travel. We have had many different types of campers and are also trying to figure out what will be the next best one (for the least money of course). Always have four or five projects, and most of them are 90% done. I also have a 14-year-old son, and that is a hobby and a passion all by itself.

What went through your mind when you were diagnosed with MS in 2010?

Denial. I think that is common. I thought I’d take some medicine for the rest of my life but other than that things would go on just like normal.

Actually I was lucky for a couple of reasons. I have a very large number of lesions on my brain and spine but for the most part they had lousy aim and I didn’t know I had MS until late in life (late 40s).

How did you find out about Sailing Sclerosis: Oceans for Hope?

I was reading the multiple sclerosis forum on PatientsLikeMe and a poster mentioned the Sailing Sclerosis project, the boat Oceans of Hope and the route it was currently taking. That route almost exactly matched the one I had taken in my 20s with my brother on a 38’ sailboat, Sirena, so that piqued my interest.

What was your experience like with Oceans for Hope? Where did you go, and what was it like to sail with other people with MS? 

I roomed with another MS crew for a few nights in Papeete, Tahiti before boarding the boat. We had all made contact via the Internet well before the trip, and had arranged to meet, rent a car and tour the island together. It was a good way for the six of us (three Americans; three Danes) to make first contact.

We were also able to met two people from the MS4 crew (people leaving the boat), and have dinner with them. They had done a longer Pacific crossing so it was very interesting! Gave us some good pointers and told us what berths to avoid. Unfortunately, I got one of those berths!

After a few days of provisioning and safety lectures, we took an overnight sail to the island of Moorea and anchored out for a few days. The professional crew introduced the MS crew to the finer points of “jumping off a moving boom.” I didn’t partake! (I’d have jumped off the boom…it was getting UP ON the boom that was the problem!)

Then a multi-day sail to Bora Bora which is as beautiful as everyone says. The locals were even more lovely and the folks at The Black Pearl Farm, where we were anchored, took amazing care of us. We even dove for pearls! The last leg was an 11-day leg to Pago Pago in American Samoa.

The great thing of traveling with other folk that have MS and with people that are now so used to being with people with MS was that the MS wasn’t hidden, wasn’t shameful…it really didn’t matter. People talked about it at times, comparing experiences, drugs, etc. but not dwelling on it to an unhealthy extent.

The best thing about this trip was easily the people I met and the camaraderie.

What’s one thing you learned about yourself on your journey from Tahiti to Samoa has spread?

The second thought that went through my mind after I got done denying my MS was, “Boy, I sure am glad I traveled and took those chances when I was younger, because I’m not going to be able to do anything else, now am I?”

Well I am still glad I took those chances back then, but Oceans of Hope is showing me I can still can take chances like that now.

What has your experience been with PatientsLikeMe? What keeps you coming back to the site?

I found out about sailing sclerosis on the site, for that I will always be grateful. I come back when I need to research a topic, ask a question or just find out what some fellow MSers are thinking.

 

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“We are the ones that know what is required to give us the care we deserve” — Member Ann shares her story for Rare Disease Day

Posted February 29th, 2016 by

 February 29 only comes around every four years – and this year, it’s extra special: Today marks the 9th annual Rare Disease Day. In the United States, a disease is considered rare if it affects less than 200,000 people at any given time.

This year’s theme is all about elevating the patient voice, so we caught up with member Ann (annpkerrigan) to learn more about what it’s like to live with alkaptonuria (AKU), a rare disease that affects 159 PatientsLikeMe members. Here’s what she had to say…

How would you describe AKU to someone who has never heard of it?

I suffer from AKU, which is a rare genetic disease with no cure or treatment but not fatal. This is what I was told six years ago when diagnosed after many years attempting to identify my condition. AKU is a metabolic disease, which causes severe early-onset osteoarthritis. It can be a painful and degenerative disease.

Over the years, I’ve learned to adapt and make changes to my home. I live alone and it’s crucial I can manage everything. Prior to diagnosis my knees were very painful so I moved to a ground floor apartment in Bristol to be closer to work and because using stairs became impossible. My GP referred an occupational therapist to assess my home and she provided equipment to help, like a sock aid and a long-handled comb. She also authorized the council to install a wet room, which provided safety and independence. When my shoulders deteriorated it became painful to change gears when driving so I was able to get an automatic car through the Motability scheme in the UK.

How has your life changed since your diagnosis?

A major problem was washing my hair because I was unable to hold my arms up for any length of time, so I’ve been going to a hairdresser weekly for years. I’ve also lost three inches in height because my spine’s compressed. I’m only five feet now, so I’ve had shelves lowered in my flat and I’m currently saving to adapt my kitchen.

As for work and social life, everything’s changed. I haven’t worked since diagnosis, which coincided with redundancy because of my disease escalating. I contacted The AKU Society in February 2010 and was invited for three days to undergo tests to aid research and to help me. The trip was wonderful because I met experts who understood my disease and I no longer felt isolated. The tests revealed a lesion on my chest and I was referred for a CT scan, which identified a 9cm tumor tucked underneath my breast bone – beside my lungs and heart – which had to be removed. I wasn’t symptomatic and it was thanks to Liverpool this was identified!

The main problem I face is financial. Having left work at 50 I’ve lost a good income and standard of living. I’ve also spent my redundancy on emergencies like a new washing machine, refrigerator and to supplement my income, and have lost 15 years of pension contributions. However, the worst part is knowing there’s no cure, and trying to come to terms with it.

However, the AKU Society’s been brilliant, as has peer support, and I’ve been surgery-free for more than two years. But moving forward, I’m having a right hip replacement in March and carpal tunnel surgery in May. My social life is very different now because there are activities I can’t participate in, and although I’ve always loved to travel this is also difficult now. Essentially, my life has completely changed and while I try to remain positive and independent I sometimes suffer from depression.

What changes do you think need to happen in society to raise awareness about rare diseases like AKU?

AKU is largely an invisible disability – patients look perfectly normal on the outside. I have a blue badge for parking because I need the extra space to get my legs out of the car, and because I have a problem walking, but I’ve been shouted at for parking in a disabled space because I don’t fit the stereotype. So I’d like to see a campaign to highlight the difficulties of invisible disabilities. The government hasn’t helped either because they’ve targeted vulnerable groups in society and labeled the disabled as fraudsters. Families of AKU patients need support, too, and could help each other if a group was established or a forum available.

How can healthcare become more compassionate towards patients with rare diseases?

I’d like to see every newly diagnosed patient given counseling and have an AKU buddy for peer support.

Rare diseases like AKU are known as orphan diseases because they affect a small percentage of the population. As a result, they lack funding and largely remain unknown to government, medical practitioners and the general public. I would love to see a campaign to educate government, medical practitioners and the general public about invisible disabilities and rare diseases. I’ve been involved in teaching third year medical students for the last three years so that they’ll know how to identity AKU earlier and to think outside the box!  Medical practitioners need to listen to their patients and if a patient reports something that doesn’t easily fit a diagnosis, this could be the red flag pointing to a rare condition.

I think patients will start to receive better care once doctors listen and respond quickly, which will come about through teaching, improved resources, funding and changing the mind sets of the public and government. I’d also like to see more partnerships between patients with rare diseases, medical practitioners and government because we are the ones that know what is required to give us the care we deserve. Therefore, we need to educate and inform all the key stakeholders so that they too will become advocates.

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1http://www.rarediseaseday.org/article/what-is-a-rare-disease


“I had no idea that my thyroid controls so much” — PatientsLikeMe member Barbara shares her experience for Thyroid Awareness Month

Posted January 29th, 2016 by

January is Thyroid Awareness Month. So, how much do you know about the small, butterfly-shaped gland that influences the way your heart, brain, liver, kidneys and skin function? To help spread #thyroidawareness, we asked member Barbara to tell us about living with thyroid cancer and hypothyroidism, a condition that affects over 6,000 PatientsLikeMe members.

Barbara shares how her thyroid issues have taken an emotional toll on her, as well as some advice on being your own advocate: “Fight for your right to feel normal again.”

Tell us a little about yourself. What are your hobbies and passions?

I really love photography and a new passion is gemstones. I have been taking photos since I was a kid.  I love landscapes and different and interesting people. I still have several film cameras but I love the freedom of digital. I enjoy video and web design as well. I have gotten the opportunity to study gemstones and it has opened up a big new world. I am currently studying how to identify gemstones. It is like being a detective.  There are so many different types. Learning their origins has been fascinating. I also love watching Kung Fu movies with my husband.

When you were diagnosed, what went through your mind?

Barbara took this picture on her trip to Holland.

My diagnosis was a little odd.

I went in for a regular Pap appointment and the doctor felt my glands and made an offhand remark, “Oh, you’ve had that checked,” and then continued on. I sat there stunned. I did not like this doctor so I didn’t say anything about it. When I got home I immediately called and scheduled a physical. It was during the physical that they examined the lump on my thyroid. They sent me to an endocrinologist who did a biopsy after joking that he could do it blindfolded. I did not like that doctor either. The results were abnormal but inconclusive. I was told that I needed surgery and that there was only a 20% chance it was cancer and a 20% chance that I would need thyroid medication.

I thought that I might die. I know that was an overreaction but I was scared.

I didn’t get a real diagnosis until after the surgery.  It was cancer, and within two weeks I knew I needed medication even though I still have half my thyroid.

How has your life changed after having thyroid surgery?  

I have become intimately familiar with exhaustion. I was told by doctors and friends and co-workers that managing my thyroid would be no big deal. Only one person gave me a real glimpse of what was to come. That was a professor that had a friend with extreme exhaustion due to his thyroid issues.

I have been tired, exhausted, angry, unreasonable, irrational and a nightmare to live with. The worst was the first year but it took many years before I started to feel close to normal again. The surgery was nothing compared to my symptoms afterwards especially since I didn’t have any to start with. They have no idea why I got cancer. There is some in my family and I have been told that there can be a link with melanoma, which does run in the family. That is something I am still learning about.

I can empathize much more with people dealing with mental illness because looking back it seems like I was crazy. I know I was not in my right mind.

Barbara took this picture on a trip to Holland.

I have learned to be very sensitive to my emotions.  If I realize that I am not feeling “right,” then I can take precautions. If it is a really bad day I may call in sick to work because it can affect my job performance. I seem to be more prone to migraines when I am off. It can be really hard to tell if I am hypo- or hyper- from my medication. The symptoms can overlap or be very similar. I have charted all of my lab results and read a lot of different research so that I can be my own best advocate. Learning more and paying close attention along with an alarm set for my medication helps a lot. I never ever miss a dose. Depending on my blood work I may adjust my dose by half a pill a week or every other week. I have found that I am very sensitive to dosages. I miss Levothroid — it worked better than the Levothroxine I take now.

In honor of Thyroid Awareness Month, what’s one thing you think people should know about living with and recovering from thyroid cancer?

There are many different ways each person may be affected. If they push you away, please be patient. I did not realize how horrible I was until I came out of the fog. I didn’t feel that sick at the time but looking back, wow. There is help; once I switched doctors the new one listened a lot closer to what I told him and he believed me. Fight for your right to feel normal again. I had no idea that my thyroid controls so much.

In your profile, you mention your doctor: “He doesn’t seem to really understand what I am feeling because by now I should be ‘fine.’” How have you dealt with this? Do you have any advice for someone in a similar situation?

Doctors have been frustrating at times. I have tried to restate things in a different way and if that didn’t work I would request a different doctor. I have also seen a chiropractor that does muscle testing and she helped me a lot even though it seemed an odd way to see what could help. We found that a vitamin and mineral supplements helps me a lot.  We went through a few other supplements to get here but I felt better with each step and she was excited to see me improve. She started with a supplement that helped my liver. I would think that everyone may be a little different. She said that I improved about twice as fast as she thought I would so we were both very happy with the results. Now I have the energy to go out and take some photos.

What has it been like connecting with other PatientsLikeMe members with your condition?

It has been very helpful to see what other people try and what they feel works for them.  It has given me hope. I love the thought of all of our data helping others so they will have a faster, easier time with whatever their ailment is. If I don’t feel well I can see that someone else is doing much worse so I better be happy for what I do have.

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“I can see that there actually is help here.” – JustinSingleton shares his experiences with PTS

Posted August 21st, 2015 by

JustinSingleton is an Army veteran who recently joined PatientsLikeMe back in June, and he’s been exploring the veteran’s community ever since. This month, he wrote about his experiences in an interview, and below, you can read what he had to say about getting diagnosed with PTS, managing his triggers and the importance of connecting and sharing with fellow service members. 

Can you give us a little background about your experience in the military?

In 1998, I joined the Ohio Army National Guard as an Indirect Fire Infantryman – the guy that shoots the mortars out of a big tube. For six years I trained on a mortar gun, but after being called back into the Army (I left in 2004), I was assigned to an Infantry Reconnaissance platoon, and I had no idea what I was doing. Before heading to Iraq, we trained together as a platoon for six months – learning not only the trade, but to trust each other with our lives.

It wasn’t until March 2006 that we arrived in Iraq, and I was assigned to the Anbar Province, which at the time was rated as the worst province of the nation. I was deployed in the time leading up to the need for “the surge.” As we drove the highways of the Anbar, we were shot at, mortared, and bombed. Intelligence even found “wanted” posters of one of our vehicles (we named it Chuck Norris).

When were you diagnosed with PTS?

I wasn’t diagnosed with PTS until many years after the war (I tried to “fix” myself), but the traumatic events are actually multiple, including receiving indirect fire on what was supposed to be my last mission – just a week or so after two good friends were evacuated after being maimed for life.

What have you done to manage your symptoms of PTS?

At the beginning, I refused medicines – I thought I was strong enough to beat it on my own. I worked with a VA counselor before moving for a semester. While there, I worked with a university student/counselor, but nothing was really helping. Finally, I went to my Primary Care Physician and told her that I needed more. The VA psychiatrist tested some medicines, but one needed to be changed (this is normal). Finally, the combination of medicine and individual therapy created within me a sense of “I might make it.”

You joined PatientsLikeMe in June 2015.  As a newer member, what do you think of the veteran’s and PTS communities?

I joined this community because although I feel better than before, I still need the help of others. I can see that there actually is help here.

You’ve mentioned in the forum that your triggers seem to be non-combat related – can you describe your triggers?

In one of the forums I mentioned my triggers. These, to me, are odd. Bridges, garbage on the side of the road, and even a midnight stroll have triggered panic attacks or anxiety. Often, simply being in a grocery store too long causes anxiety to the point that I take a quarter of Ativan, squeeze my fists or the cart, and head to the door or checkout (whether finished or not). While this has caused an impairment in life, it has never been “the end” of life. These are objects on my road to a healthy living – objectives to be conquered.

Although there is a prevalent idea in the Armed Forces that a man/woman should never ask for help or ever see a physician, I have found that to be a rather juvenile view on life. The greatest thing a veteran facing PTS or anxiety can do is not try to face it alone. We are a community, a brotherhood, and only together with a good doctor can we ever hope to survive.

What advice do you have for other military members who may be experiencing PTS and related conditions?

Twenty-three of our brothers and sisters quit every day. I refuse to be a part of that statistic.

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Patient, caregiver, wife and mother – Georgiapeach85 shares about her experiences with MS and her husband’s PTS

Posted June 22nd, 2015 by

Ashleigh (Georgiapeach85) is a little bit different than your typical PatientsLikeMe member – not only is she living with multiple sclerosis, she also a caregiver for her husband Phil, who has been diagnosed with PTS. In her interview, Ashleigh shares her unique perspective gained from her role as a patient and caregiver, and how PatientsLikeMe has helped her to look for a person’s character, not their diagnosis. Read about her journey below.

Hi Ashleigh! Tell us a little about yourself and your husband.
Hi! I am 29 and my husband Phil is 33. We have been married for 9 and a half years, and we have a son who is almost two 🙂 . I was diagnosed with Relapsing Remitting MS in July 2009 just before my 24th birthday. My husband served in the Army Reserves for just over six years and did one tour in Afghanistan in 2002. I met him while he was going through his Med Board and discharge. We met while working at Best Buy – he was Loss Prevention, the ones in the yellow shirts up front – and I was a cashier and bought him a coke on his first day 🙂 . We dated for nine months, were engaged for six, and got married and haven’t looked back!

What was your husband’s PTS diagnosis experience like?
It has been hard as his wife to see him struggle with first acknowledging that he had stronger reactions to small things in life than most people would and that perhaps he should seek outside help and then the struggle to get the care he needs from the VA. He is finally seeing a counselor next week after requesting he be evaluated for PTS a year ago. He has never had insurance other than the VA so has to rely on their lengthy processes for treatment. He was given a preliminary evaluation in March for the claim and was told that he definitely needed to be seen further, but then the VA made no follow up.

One of his manifestations is getting very frustrated very quickly, so I try to make all of his doctor appointments for him so he doesn’t have to deal with the wait times and rudeness from the VA employees. I have spent hours on the phone getting the right forms filled out and referrals done. I am proud of him for not giving up on it and seeing that he needs to learn some situational coping strategies so that we can enjoy life as a family. Phil loves camping and the outdoors where things are peaceful and open, so we belong to a private camping club and he loves to take our son and dog up there to get away.

You have a unique perspective as both an MS patient and a caregiver for your husband. Can you speak about your role as a caregiver and some of the challenges you face?
The biggest challenge I face is remembering his reactions to crowds and loud stimulating environments when we are choosing where to go. We have had to leave restaurants because they have been so busy and crowded just waiting for a table that he gets very panicked and apprehensive about being able to get to an exit quickly. He does just fine most places, but crowds and small areas stress him out. I handle making all of my appointments for my MS and his for his medical needs so it can be stressful sometimes while trying to work full time and be a mom.

How has PatientsLikeMe helped you expand your role as a caregiver?
I am just exploring the Post-Traumatic Stress section to see what others are experiencing. I never even thought about getting support for being a caregiver for Phil, I just always assumed he was the only one with caregiving responsibilities for me, but I see that I need to learn what I can about what he is going through so that I can give back the support he has given me over the years and through my diagnosis. Just as I want to be open about my MS, but don’t want it to define me as a person, Phil wants to learn to address his experience in Afghanistan and how he reacts to situations outside his control, but doesn’t want to be defined by a label of PTS. PatientsLikeMe has helped me to look for a person’s character, not their diagnosis. I have met many wonderful people and it is a great relief to know I can log on and vent or seek guidance from people all over the world.

What has been the most helpful part of the PatientsLikeMe site with regards to your MS?
Well I found the best neurologist ever through the site by looking up people who were on Low-Dose Naltrexone for their MS (which is an off-label prescription my former neurologist thought was not worth pursuing), then I sorted by those geographically closest to me, and I sent them a private message as to who prescribed them LDN. One of the members gave me Dr. English’s name at the MS Center of Atlanta, and that center has been a godsend for the care and advancements I have been exposed to. In a similar circumstance, I have made a new friend when a lady two years older than me found me under a search for those in her area and through messaging we found out that her son and mine were born on the same day, just one year apart! She lives 10 minutes away and Phil and I have become friends with her and her husband and that has been so great to have a female friend my age, with MS, and with a young child. Beyond the connections, being able to search for a medication and seeing how it is working for others and their reviews has been immensely helpful.

What’s one piece of advice you have for other caregivers who are also managing their own chronic conditions?
Just because there might not be a cure doesn’t mean you can’t learn a lot about life and yourself in the journey for caring for someone you love. Learn to take the good days with the bad and be thankful for life and being around to give support. In my case, I care for my spouse whom I love with all my heart and will be with for the rest of our lives. You have to view the big picture when you get caught up in the stress of day-to-day or certain circumstances, it’s the only perspective you can take when you’re in it for the long haul 🙂 . Also, don’t feel guilty when you need to take a break for yourself, you are only good for others when you have charged yourself up.

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“Don’t go it alone” – IPF member Christine shares about her health journey

Posted April 24th, 2015 by

Christine_Williams was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2009, and ever since, she’s been managing a “rollercoaster ride that’s terrifying and not fun.” But she’s connected with your community on PatientsLikeMe for inspiration and was even referred to a new medical center to be evaluated for a lung transplant by her “rehabilitation buddies.” Below, read what Christine shared about her diagnosis, progression and thoughts on living with IPF.

Can you share a bit about your diagnosis experience? We’ve heard from many members that finding an official diagnosis isn’t always easy. What that true for you, too? 

Mostly no. In March 2009, I contracted pneumonia back to back within 8 weeks. It was around the time when the swine flu became a big deal, and I had visited Cancun, Mexico that year. I wasn’t necessarily in great health but fairly healthy. I had always attributed my shortness of breath to me being overweight. Because of the pneumonia, a CT scan was ordered. Then a bronchoscopy and finally a video assisted lung biopsy. I was diagnosed however right after the bronchoscopy. I started exhibiting shortness of breath symptoms in 2001. Even went through a series of PFTs at the time but was given an inhaler and told to lose weight. Ironically I didn’t start to suffer from REAL shortness of breath until after the diagnosis. Perhaps I had an exacerbation when sick with pneumonia. 

How has your IPF progressed over the past five years?

To tell you the truth, I really don’t know. I figured the doctor would tell me if there was an exacerbation or not. No news is good news? I do know that my disease had stabilized within 2 years because I was “kicked out” of the lung transplant program so to speak. I no longer needed to see the transplant team doctors however was recommended to still see my pulmonologist which I did. It was only the diagnosis of pulmonary hypertension (in October 2013) that the option of lung transplant is back on the table. I know I need to know this information and will ask my pulmonologist how my PF has progressed when I see her this month. I was only using oxygen at night until March 2013. Then I started using it full time. My liters per minute (LPM) has increased since then too (from 2-4 at rest and 4-6/10 on exertion).

Take us through a typical day in your life – how are you managing your IPF?

I officially retired from my job December 2014. I have up days and down days. Every morning I open my eyes, I thank God! I attend pulmonary rehabilitation (PR) twice a week (Tuesdays and Thursdays). I used to attend a yoga class given by the PR until it was cancelled. I hope they bring it back soon because it brings me much needed peace and helps me breath better. I try to be as “normal” as possible. I cook, clean, spend time with family and friends. I also help take care of my 5-year old twin grandsons for about 3 hours every day after school. I run errands; post office, dry cleaners, etc. Sometimes I go to the doctor by myself but most times I ask for someone to go with me; just to have another set of eyes and ears. I rely heavily on my support system both in person and on-line.

Since it looks like a lung transplant might be back on the table for you, can you tell us a little about what the experience has been like?

It is a very exhausting experience. I’m being evaluated by three different centers (University of Pittsburgh Medical Center, Temple University and New York Columbia Presbyterian). Every other week, I’m changing my mind. Traveling back and forth, making appointments, getting all the tests done can be extremely stressful. I was initially with the University of Pennsylvania lung transplant center. I was rejected by them because of esophageal issues. I was so defeated that I went home and cried and said I can’t do this anymore. But I guess God has something else in store for me. I was referred to UPMC and my cousin had a double lung transplant at Temple. One of my “rehabilitation buddies” went to NYCP and referred them to me. I am a part of the NYCP program and UPMC and Temple are in the process of testing me. I know that lung transplant is not a cure but an option. It’s trading one set of challenges for another. It is good to see some people that I have met on-line over the years thrive with transplant.

How have others in the IPF community on PatientsLikeMe helped support your journey?

Words cannot express how I feel about the IPF community! As I mentioned earlier, they are an important part of my inspiration. Their honesty, love, courage and encouragement help keep me going when I think I can’t go on anymore. I pray for our individual and collective healing on a daily basis. 

You post a bunch to the “Today’s Thought” thread in the forum – what is one thought you’d share with someone who has recently been diagnosed with IPF?

DON’T GO IT ALONE!!!! Please reach out to family and friends. Stay connected even if it’s online. Research face-to-face groups on the Pulmonary Fibrosis Foundation website. Talk to a therapist, priest, rabbi, etc. This can be a dark, lonely and scary experience; a rollercoaster ride that’s terrifying and not fun. Remember that you are not alone!!! And there is a whole community of us just waiting with open arms.

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PatientsLikeMe member TMurph58 shares about his advocacy efforts and journey with ALS

Posted April 20th, 2015 by

TMurph58 is a longtime PatientsLikeMe member who is living with ALS. You may remember him from his 2012 interview, when he talked about the “Treat Us Now” movement and his experiences with ALS. We recently caught up with Tom, and he shared about his extensive advocacy efforts over the past few years, including his recent presentation on patient-focused drug development with Sally Okun, PatientsLikeMe’s Vice President of Advocacy, Policy and Patient Safety. Catch up on his journey below.

Hi Tom! Can you share a little about your early symptoms and diagnosis experience?

I think I was very lucky to have a knowledgeable general practitioner – my actual diagnosis only took three months to complete even though I had to see three separate neurologists. My early symptoms started in my right hand with weakness and the atrophy of the thumb muscle – I thought it was carpal tunnel syndrome.

How has your ALS progressed over the past few years?

Thankfully I have been in the category of a slow progressor:

The ALSFRS-R measures activities of daily living (ADL) and global function for patients with Amyotrophic Lateral Sclerosis (ALS). The ALSFRS-R provides a physicians-generated estimate of patient’s degree of functional impairment, which can be evaluated serially to objectively assess any response to treatment or progression of disease.

Description:

  • 12-question scale with 5 possible responses each (0-indicates unable to 4-indicates normal ability)
  • Individual item scores are added to produce a reported score of between 0 = worst and 48 = best

What sort of advocacy efforts have you been involved in since your diagnosis?

  • PatientsLikeMe (PLM) Member since January 2011.
  • Active with the ALS Association (raised over $80,000 to date) – my most current activity.
  • On 8/2/2011, FM 106.7 The Fan (Sports Junkies) hosted an ALS Awareness Day Interview.
  • March 2012: Featured Interview on PatientsLikeMe (PLM) –Meet ALS “Treat Us Now” Steering Committee Member Tom Murphy.
  • April 24-25 2012 Visit to Capitol Hill with Former Neuraltus CEO (Andrew Gengos) – Summary: I think Andrew Gengos (CEO Neuraltus) and I made a good “team” – Both Industry and Patients “partnering” with a consistent message related to Expanded Access and Accelerated Approval for Rare and Life Threatening diseases such as ALS.
  • Raised over $30,000 for a collaboration between ALS Treat Us Now and the ALS Therapy Development Institute (ALSTDI) and rode the last 15 miles of the ALSTDI Tri-State Trek in July 2012.
  • Presentation made to the FDA CDER on 8/24/2012.

You’re a 3-star data donor on PatientsLikeMe – what do you find helpful about tracking your health on the site?

Because of this site, I think I have the most complete documentation of my disease progression in treatments than anyone in the health industry. It is a great tool and has been unbelievably helpful to me over the last four years. 

Finally, congratulations on your 33-year anniversary! As a father and husband, what’s one thing you’d like to share with the community about ALS and family relationships?

At the end of the day, given all the challenges those of us with ALS face – nothing is more important than your family relationships and the love you share.

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“ALS is not for sissies.” – PatientsLikeMe member SuperScout shares about her journey with ALS

Posted March 30th, 2015 by

That’s what SuperScout likes to tell people when explaining her personal motto. She was diagnosed in 2009, and in a recent interview, she explained how she takes her life one day, and sometimes one hour, at a time. In her interview, she broke down what goes on during a typical visit to her ALS clinic, and shared how technology has been simultaneously frustrating and extremely helpful. Learn about her journey below.

When did you first experience symptoms of ALS?

In August 2008, I was attending a Girl Scout event. As we recited the Promise, I noticed my fingers weren’t making the sign correctly. Over the next few months, I began to lose the fine motor skills in my right hand. Writing was hard, & I started using my left hand for most things. I thought I had some form of carpal tunnel. I had NO pain, so I wasn’t concerned. In December 2008, I went to my family doctor for my annual check-up. I told him my problems & he sent me for an electroencephalogram (EEG). That began the series of tests that eventually led to my diagnosis in April 2009.

How did you feel after being officially diagnosed? And what was the first thing that went through your mind?

I don’t think I will ever forget that day. I suspected something unusual was going to happen because the technician at my second EEG commented that the neurologist must find my case interesting because normally, it’s difficult to get an appointment with him. He entered the exam room, sat down, and said, “I have bad news for you. You have Lou Gehrig’s Disease.” I was stunned, and asked if it would affect my longevity. He said yes, but couldn’t tell me how much. He asked if I had any questions, but I didn’t because I didn’t know much about it. Sure, I had heard of it, but didn’t know what it would do to me. I went home, and looked on the Internet for information on ALS. It was scary. The first thing through my mind was how it would change my life and that of my family. I was used to doing for others, now they would need to do for me.

You tell people “ALS is not for sissies.” Can you elaborate on that?

A sissy is defined as someone who is timid or cowardly. No one who has ALS can fit that definition. We all know it will shorten our life, and rob us of many functions we once took for granted. I really like the PSA Angela Lansbury did for ALS in 2008. She’s sitting on a stool, and a gun is fired. As the bullet races toward her, she describes what ALS does to the body, and ends by saying “There’s nothing you can do to stop it.” She asks for donations for the ALS Association (ALSA) stating that with this help those with ALS can do this: She rises and avoids the oncoming bullet. We all see the bullet, yet can’t do anything to stop it. Unlike other serious diseases, there are NO options for a treatment that will cure this disease that’s been described as horrific. However, every day we People with ALS (PALS) are fighting the daily battle to stay positive. Sometimes, it’s easy, sometimes, it’s hard. You take it one day at a time, or even just one hour at a time. That makes us BRAVE, and not sissies.

Take us through a typical visit to your ALS clinic – what’s the experience like?

Every 3 months, I visit the ALS clinic at Penn State Hershey Medical Center. Once my weight is checked, I’m taken to an exam room, then the team of specialists each stop in to see me. In addition to the neurologist, I see a respiratory therapist, nurse, ALS representative, MDA representative, speech therapist, dietician, occupational therapist, physical therapist, social worker, & a pastoral care minister. They each make recommendations to help me have the best quality of life with ALS as possible. My family members are asked if they have any needs. Each room has a sign – “Have we answered all your questions?” About 1 week after my visit, I receive in the mail a summary of my visit with their recommendations. Prior to the visit, I also complete a Quality of Life survey, similar to the one on this website. Although lengthy (around 3 1/2 hours), I enjoy my visits because each person makes me feel important and they truly care about me.

How has technology helped you with your communication?

When I began using my Eyegaze Edge, I found it frustrating, but gradually got better at not moving my head and was able to be successful. Now, it is my sole means of communication. Before my caregiver arrives in the morning, I type out for her what I want for my meals, what channels I want to watch on TV, and any special information. My son says I sound like Charlie Brown’s teacher when I talk, so using my device is a necessity if I want to communicate. We even take it to Sunday School, so I can participate in our class discussions. My most favorite thing to do is connect to the internet. Sending emails is easy, and I go on Facebook, play games, read, Skype, shop, and do whatever I’m in the mood for. Once, when the camera broke, I was without it for a few days and I really missed it. I wound up grunting “Yes” or “No” to questions which was frustrating. Using technology to connect to others makes me feel I still have a purpose in life, and I have something worthwhile to contribute.

Finally, what’s the most positive surprise you’ve learned while living with ALS?

The most positive surprise I’ve learned while living with ALS is that I have more people thinking about me, and supporting me with their prayers, than I expected. I learned this during the ALS Ice Bucket Challenge. I began to see videos posted on my Facebook timeline of people participating in the Challenge in my honor. It warmed my heart to see them. They featured friends, former work colleagues, and some fellow Girl Scout volunteers. Many said how I’ve inspired them with my smile. It was never my intention to be an inspiration, but just to cope with ALS the best way I knew, with my faith in God and a sense of humor. Due to the Ice Bucket Challenge, the world now knew more about ALS, and money will be used to find a treatment and cure for ALS. I feel hopeful for the first time since my diagnosis.

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“I am not alone in this” – PatientsLikeMe member Rikwood55 shares his journey with lung cancer

Posted March 23rd, 2015 by

New member (and New Zealander) Rikwood55 was diagnosed at age 58 with non-small cell lung carcinoma (stage 4), and he said he joined PatientsLikeMe in the hope of connecting with people on the same or similar lung cancer immunotherapy treatments. Rick took part in a clinical trial, and is now tolerating the immunotherapy treatment well. His scans are looking good, and he sums it up this way:

“Five rounds of Carboplatin Chemo was hard going, as it is for everyone. Now more stability has returned and with it, hope for the future.”

Read Rick’s interview below and share your own experiences.

Tell us a little bit about yourself, Rick.

I am Rick, and I was diagnosed at age 58 with NSCLC stage 4 metastasis. I am a New Zealand-born resident currently receiving immunotherapy treatment in a clinical trial every 3 weeks at Auckland Hospital. I have received 14 treatments to date. Scan results have been good and I am tolerating the treatment well. I have joined PatientsLikeMe in the hope of connecting with people on the same or similar lung cancer immunotherapy treatments. Please, no clinical specific info, which would in any way compromise study results. Let’s talk about living day to day…I think you’ll know what I mean.

You were diagnosed about 2 years ago – what went through your mind after your diagnosis?

Diagnosis day was a tough day. Mentally paralyzing. No soft landing. I dealt with it as best as I could. Fortunately my beautiful wife was there for me. 

You’re a brand-new member of PatientsLikeMe – welcome! What do you think of the community and site so far? 

Thank you for your ‘new member’ welcome to PatientsLikeMe. What I have seen so far, this site looks to me to be very impressive, I found the section on sleep very reassuring. Insomnia is a big issue for me. I see now from your research data that I am not alone in this.

On your profile, you’ve noted that one of your interests is in clinical trials. What about clinical trials makes you passionate about them?

I do not think I am passionate about clinical trials per se. However, I am very enthusiastic about the immunotherapy study treatment that I am fortunate to currently be on. It has given me hope. A sense of hopelessness was never far from my mind in the first year after diagnosis. Five rounds of carboplatin chemotherapy was hard going, as it is for everyone. Now more stability has returned and with it, hope for the future.

Finally, what is one thing you’ve learned over the past two years since your diagnosis that you’d like to share with the lung cancer community?

Maybe one small way that I can try and say thanks to the cancer researchers, biotechnicians, study administrators and clinical care staff is to show support and encouragement for the groundbreaking work they are doing. They deserve all the flag waving acknowledgment possible for giving me back hope.

To paraphrase Mel Bernstein/Harris Yulin in Scarface, (1983), “Everyday above ground is a good day.”

Cheers!

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“I am slowly building my self-esteem “ – PatientsLikeMe member SuperChick shares about her journey with PTSD

Posted March 4th, 2015 by

PatientsLikeMe member SuperChick is a veteran living with post traumatic stress disorder (PTSD), and her story is one of learning to cope with emotions and frustrations. She’s living proof that things can get better – she’s a loving mother of two, has a great husband and is managing several other mental health conditions. Below, she shared about the sexual abuse she experienced while serving in the military and explained how her previous husband physically assaulted her. Superchick also describes the symptoms of her PTSD and how the community on PatientsLikeMe has been “a huge help” to her. Read about her journey below.

Note: SuperChick shares about her story of abuse, which may be triggering.

Can you speak a little about your PTSD and what led to your diagnosis in 1986?

I was originally diagnosed with PTSD after being raped while I was in the military. I believe I was more susceptible because I had been molested as a child and didn’t have good family support or dynamics. I worked through it, but was diagnosed again in 2007 after leaving a severely abusive marriage, where I was raped multiple times and choked at least twice. I was emotionally abused and didn’t even realize it was abuse. I stayed for fourteen years trying to change myself because my ex-husband had convinced me I was the problem and couldn’t do anything right. It destroyed my self-esteem and any healthy coping skills I had.

What are some of the symptoms you experience because of your PTSD?

Since being diagnosed with PTSD the second time, I have numbed my emotions, I experience anxiety, and I have trouble falling and staying asleep even though I may be thoroughly exhausted and am taking medications for sleep. Sometimes I am afraid to go to sleep. I sometimes have nightmares, although not nearly as often as I used to. I have difficulty fully trusting my current husband, or people in general for that matter, even though I know he would never harm me and treats me with tremendous respect. I have suffered from a very low self-esteem and for a long time felt responsible for the trauma. I react more intensely to triggering situations than other people would. I am slowly building my self-esteem, but that is still a struggle for me.

You’ve got two wonderful children – how does PTSD affect your family life?

Because my children spend half their time with their father, I worry about them when they’re with him because I know how abusive he can be. I worry about them being sexually abused or harmed and am very protective of them around anyone I don’t know very well. I’m afraid of my daughter becoming involved in abusive relationships when she grows older and my son becoming an abuser. In a positive sense, I am very affectionate and make time to listen to them and engage in activities I know they enjoy because I want them to experience healthy love. I am remarried to a man who truly loves and respects me. My husband and I try to model a healthy relationship for them.

It’s hard for my husband and me, though. The fact that I still have to be involved with my ex-husband and am told over and over again by the court system, child protective services, and all the mediators we’ve worked with that I have to get along with him makes things very difficult. It minimizes or completely dismisses the trauma I’ve experienced. My husband wants to protect me, and this makes him feel frustrated and powerless. There is no way to get along with a narcissist and abuser. I want to move on and not have him as the focus of our lives, but then something happens and it starts all over again. Sometimes my husband feels shut down when he suggests something I have already tried and found to be futile.

I’ve come to realize that while I have been dealing with all of this for over seven years, he came into this halfway through and is in a different place than I am, having to deal with emotions and frustrations I’ve already experienced and dealt with. He is beginning to understand that his approach can sometimes trigger my symptoms, so when he feels like I’m shutting him down I am actually trying not to go back to that pain. It’s hard in that respect for me to be there for him. We plan to go back to family therapy to help develop a healthier focus for our lives. We’ve been dealing with adversity that has out of necessity been the major focus of our lives, but now we need to move on.

How have you learned to live and cope with your PTSD?

I’ve been in therapy since before I left my marriage, and finally found a therapist who has helped me overcome many of the symptoms of PTSD through EMDR (eye movement desensitization and reprocessing), which helps change the way I react to the memories. For the most part, I am able to remember the trauma without it bothering me. I still experience triggers, but am able to process the emotions using cognitive behavioral therapy skills and journaling. When I am triggered, I make sure I take care of myself through prayer, talking with my husband and therapist, and doing things that help me relax, ground me, and fully engage my mind, like playing my flute and piano.

The community on PatientsLikeMe has been a huge help. I’ve been able to get support from people all over who have been through what I was going through, and that has helped me cope and make better decisions about my health. I was able to see what my main issues were through the mood map and monitor the effectiveness of my medications. There were many times the PatientsLikeMe community were far more helpful than my doctor.

You’re also living with bipolar II, depression and a few others conditions – how do these affect each other?

I believe the PTSD triggered the bipolar, because I never had symptoms until after I left my marriage and had symptoms of severe PTSD. As I look at symptoms of PTSD, it explains a lot of behaviors I didn’t fully understand, like self-harm, which began as I started to talk about and process the trauma of long-term sexual abuse in my previous marriage. As I’ve worked through many of the issues causing the PTSD, I’ve found that I no longer experience the symptoms of bipolar and have been able to decrease my medications. If I do experience depression now, it is short-lived and related to a specific experience.

As a veteran, what is one special message you’d send to your fellow veterans also living with PTSD?

I think veterans have experiences that only people who have been in the military can understand. Military units are like family, and I find I miss that sense of community now that I’m retired. Meeting with other veterans, especially those with shared experiences of PTSD, may be helpful because those people are more likely to relate well.

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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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“The human spirit is more resilient than we think” – PatientsLikeMe member mmsan66 shares her journey with ALS

Posted January 29th, 2015 by

PatientsLikeMe member mmsan66 was diagnosed with ALS back in 2008, but she’s been fortunate to experience an unusually slow progression, which currently affects only her legs. As a college professor, financial planner and ALS advocate, she raises awareness through her work with the Massachusetts Chapter of the ALS Association. She even finds time to visit places like the Grand Canyon, and she shared all about her life in a PatientsLikeMe interview. Read below to learn about her personal journey. 

What was your diagnosis experience like? What were some of your initial symptoms?

I was diagnosed in 2008 at the age of 66 but, looking back, had definitely exhibited symptoms in 2007 or earlier. I had retired a few years prior, after a long career in Human Resource Management that included positions in the fields of health care, the Federal government, higher education (Northeastern University), and high technology (the former Digital Equipment Corporation).  But, rather than slow down and enjoy retirement, I started a second career in tax and financial planning. I became an IRS Enrolled Agent (EA), earned a Certificate in Financial Planning, and obtained my securities and insurance licenses.  I started my own business as a tax and financial advisor (Ames Hill Tax Services) and also began teaching undergraduate courses in Finance, Accounting, and Investments as an Adjunct Instructor at several local colleges and universities.

I definitely noticed a change in 2007, when I experienced a number of falls (for no apparent reason), culminating in a fall while on vacation in Florida in which I fractured my left wrist. Upon returning home, I scheduled appointments with several specialists to have my legs checked out and, after a series of neurological tests, received a diagnosis of ALS at the Lahey Clinic in July of 2008. I wasn’t completely stunned, as I had done a lot of internet research on diseases with symptoms similar to mine, but had gradually eliminated them one-by-one as each test result came back negative. However, like all PALS, I was hoping against hope that my suspicions would prove false. The one thing that kept going through my mind in the days following my diagnosis was that my life—— as I knew it—– would soon be over.

How has your ALS progressed over the past few years? 

In 2009, after learning that the average life span of a PALS was 3-5 years after diagnosis, my husband and I decided to sell our home of 36 years rather than modify it. Fortunately, they were in the process of building a luxury apartment complex on a hill in town, and we were able to move into a brand new handicapped-accessible apartment, complete with roll-in shower, and overlooking a pond complete with wildlife.

By 2010 I was no longer able to walk at all, and had to rely solely on a power/ manual wheelchair, as well as a scooter. Although confined to a wheelchair, I still maintain my active tax practice, preparing individual, corporate, and trust tax returns as well as representing my clients at IRS audits. When I realized it would be too difficult to travel to and from the various campuses at which I taught, I applied and was hired as an online instructor by the University of Phoenix, where I’ve been teaching Personal Financial Planning since 2010. At this point in time, after living with the disease for 8 years, still only my legs are affected. Thankfully, I still maintain my upper body strength, and my ability to speak, swallow, breathe, etc. remains completely normal. Somehow, I can’t help but feel that this slow progression might be due in part to the upbeat, positive outlook I continually strive to maintain, and the fact that I keep very busy with my family, clients, students, attending online CPE seminars (to maintain my professional licenses), and participating in ALS fundraising walks.

We read you like to travel – what are some things you’ve done to make traveling easier?

We’ve done some travelling since I’ve been unable to walk, but nothing extensive in the last couple of years. Our last long-distance trip was to Las Vegas, the Grand Canyon and several other National Parks such as Bryce and Zion. At the time, however, I was still able to transfer with my arms from my wheelchair into the passenger seat of our van. Now, since my legs are completely useless, a handicapped van is a necessity.  We will be going to Austin, Texas in October for a niece’s wedding. We’ve found travelling is a lot easier if you call ahead to lay everything on with the airlines. Reserving a wheelchair or a power chair at each destination makes things a lot easier. And, it’s of the utmost importance when making hotel reservations to specify a “wheelchair accessible” room, not just one that’s “handicapped accessible” (a motel that has a roll-in shower is the best!).  Also, contacting local ALS organizations in the areas you plan to visit well in advance can be very beneficial. They can direct you to rental agencies or, better yet, lend you the mobility equipment you will need while you’re there.

Can you tell us a little about your work and advocacy with the Massachusetts Chapter of the ALS Association?

A few years ago, I decided to become involved in ALS Advocacy with the Massachusetts Chapter of the ALS Association. I was invited to speak to groups of scientists at Biogen Idec in Cambridge, MA on the topic of living with ALS, and was interviewed by the Boston Globe and WBUR radio when Biogen discontinued the Dexpramipexole trials. I also attended the NEALS Consortium’s first Clinical Research Learning Institute held in Clearwater, FL in October 2011. There I was fortunate to personally meet many fellow PALS from around the US, as well as prominent researchers and clinicians engaged in the fight against ALS. (I also had the pleasure of meeting Emma Willey from PatientsLikeMe.)

In addition, I have spoken to groups at various other fundraising events sponsored by organizations such as ALSA, the ALS Therapy Development Institute (ALSTDI), etc. and have represented these organizations at ALS Awareness events at Fenway Park. Because of my visibility as a PALS, I was elected to the Board of Directors of the ALS Association’s Mass chapter, and currently serve in the capacity of Secretary. 

What have you learned about yourself that has surprised you and/or your loved ones? 

I think the first and foremost thing I learned, is that the human spirit is more resilient than we think. I would never have imagined that I could be diagnosed with such a terminal disease, and still continue on with my life as best I could, finding pleasure in simple daily activities. We had travelled extensively around the world in the early years of our 47-year marriage (lived in Hong Kong for 2 years) and planned to travel internationally once again once we retired and our daughter embarked on a career of her own. Now, I appreciate just being able to get into our handicapped van and take local day trips with my husband. Never mind viewing the Taj Mahal by moonlight, now an excursion to the grocery store or taking in a local college hockey game is a welcome diversion and takes some planning.

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“Strength will come, somehow, from somewhere” – PatientsLikeMe member Glow4life shares her journey with lung cancer

Posted January 26th, 2015 by

PatientsLikeMe member Glow4life was diagnosed with lung cancer (adenocarcinoma) this past June, and her story is a testament to never losing hope. She recently shared her experiences in an interview, and she spared no details in describing her challenges. Despite her terminal diagnosis, four rounds of chemotherapy and the sudden loss of her husband, Glow4life has remained positive, and she’s learned to take every day as it comes and live in the moment. Learn about her journey below and how she shares love and hope whenever she can.

How did you react after getting diagnosed with lung cancer in 2013? What was the diagnosis process like?

I had a routine X-ray in February 2013, after attending A & E with chest pains (which turned out to be nothing). A few days later I received a letter asking me to return in 6 weeks for a follow up X-ray, as there was a suspect area, probably scarring from a previous chest infection but best to check. My general practitioner reassured me it was unlikely to be sinister, if cancer was suspected I’d be looked into immediately. I thought no more about it and returned for the repeat X-ray as scheduled. The following day my GP rang me to tell me there was a tumor on my left lung that required further investigation, and gave me the number to ring for a scan, which took place within a couple of weeks. I asked if this was likely to be cancer, and he told me it almost certainly was. The scan did, in fact, reveal a cancerous tumor, and I was referred for a PET scan and bronchoscopy. On the 27th of June, I was seen by the specialist who gave me the news that adenocarcinoma was confirmed, and had spread to the other lung, and right adrenal gland, and was given an appointment with an oncologist, who would assess appropriate chemotherapy. It’s impossible to describe how this feels, but you know that your life has changed forever. I saw the oncologist on the 7th of July and was offered a course of cisplatin/premetrexed, a course of 4 to 6 treatments, every three weeks, in an attempt to shrink the tumors and prolong life.

I was told my prognosis was terminal, and that with successful chemo, 20 percent of patients survive a maximum of 12 months. If we were shocked before, nothing compared with this, it was like being hit by a wrecking ball. I started my chemo on the 23rd of July and had the fourth session in October, which was followed by a CT scan. This showed that the tumors had shrunk and no further chemo was necessary. A maintenance course of premetrexed was available but not recommended, as the chemo had made me very ill. Since then I have been on watch and wait, every three months, last time extended to four. I go for X-ray and blood tests before my appointment with Dr. Brown, my oncologist. My cancer is stable, though not cured, and my general health is good, as is my quality of life. I do tire very quickly, but then I’m getting on a bit!

You’ve received treatment for your tumors – what’s it like being on a “watch and wait” plan?

Being on ‘watch and wait’ is like having the sword of Damocles hanging over your head, you never know when it might drop. But I try not to dwell on that, it would be wasting the extra time I have been given in pointless worry and speculation. I try to forget about it between visits, and for the most part I do, though I must admit to a certain amount of anxiety in the couple of weeks prior to the next appointment.

How has your day-to-day life changed since being diagnosed and treated for lung cancer? 

Well, I thought the worst possible thing had happened to me and things couldn’t possibly get worse. But I was about to find out different. It’s hard for me to answer this objectively, as 3 months after the diagnosis, and while I was in hospital having my 2nd chemo, my husband Tim was found dead at home, having suffered a cerebral occlusion. Tim was 11 years younger than me, and in perfect health, so the shock was profound, for all of us. I passed the next few months in a fog of chemo and grief, it was the hardest time imaginable, but the days passed and I got through it.

My life has changed beyond all description and I can say with all honesty that living without Tim is much harder than living with cancer. Loneliness is my biggest issue now, and wishing he was here to help me through this, which I know he would wish he was here to do. One thing I did learn was that having a terminal illness doesn’t make us closer to death than anyone else, and that life can be taken from any of us, at any time. So it’s important to take each day as it comes, and make each one count. When I die, nothing will be left unsaid, no actions regretted or opportunities missed.

I fear death much less than I did, while still embracing what life is left to me. We all have a time to leave this world and move on to whatever adventure lies beyond, and I know that the time is coming when Tim and I will be reunited in spirit. I will be sad to leave my beautiful family, but happy that I’ve been given this time in which we’ve all been able to prepare, and make the very most of the chance to let them know how much I love them. And we all have to leave sometime!

What have you learned from using the InstantMe feature on PatientsLikeMe?

What I’ve learned from PatientsLikeMe is that I’m not alone in this, so many of us are dealing with similar issues, and that while cancer is different to each individual, what is the same is that most of us are devastated by the effect it has on our loved ones. It’s so hard to see their sorrow, and know you are the cause and can do nothing to stop it. I’ve also learned that many people are much worse off than I am, having succumbed so much faster, while I am still here and comparatively well. Each time I go for a scan/bloods/chemo, or to oncology I see the waiting room full, and think, so many of us, all with similar fears and trepidation of what is coming our way.

We read that your motto is “Never give up, never give in” – along with that, what else would you say to someone who has been recently diagnosed with lung cancer?

What I would say to anyone recently diagnosed is this: You will wonder how you are ever going to find the strength to cope, how do people do it? But be assured that the strength will come, somehow, from somewhere, and you’ll find your way through. Take one day at a time, and make each one count. Prepare for every eventuality, but never lose hope. Follow good advice, not fads. Try not to look too far ahead and live in the day, or even the moment. Don’t think of yourself as dying from cancer, but as living with it. One of Tim’s favorite sayings, when the times were tough, was “Head up, son” I say that to myself every day.

And don’t Google! You’ll frighten yourself with out-of-date misinformation and meaningless statistics. Listen to the experts.

Finally, share love and hope wherever you can, while you can.

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“In my own words” – PatientsLikeMe member Vickie shares about her experiences with lung cancer

Posted November 20th, 2014 by

Meet Vickie, a PatientsLikeMe member who has survived cancer not once, but twice. She’s sharing her story, from diagnosis to survivorship, during Lung Cancer Awareness Month. She spoke about her reaction to getting diagnosed, the anxiety filled months leading up to surgery and what recovery was like post-operation. Learn about her journey below.

The journey
Occasionally I received cards in the mail offering discount lung or heart screenings. I think most people do now and then. I always throw them in the trash. In May 2012, I received one. For some reason I didn’t throw that one away. I called and scheduled an appointment for the heart and lung scan. Was told I’d get a letter in two weeks letting me know the results.

Imagine my surprise when 4 days later I received a voice mail asking me to call the hospital back as soon as possible. With feelings of dread and fear, I returned the call. Was told they were concerned about 2 places in my left lung. Was cautioned to not jump to any conclusions. They could be any number of things. I needed to have testing done. Was scheduled for MRI and PET Scan. Those results were enough to call for a biopsy.

Had the needle biopsy. My lung collapsed immediately. Very scary. Spent 1 night in the hospital. Sent home with instructions. Two days later began having problems breathing. Drove myself back to hospital and found out lung had collapsed again. This time was hospitalized 4 days.

While I was on a gurney in the ER, a pulmonologist from the hospital cancer center (didn’t know he came from cancer center at the time) came to see me. He asked me if I had been told the results of the biopsy. I told him no. He told me it was positive for cancer. Told me not to worry about it, they were going to take care of me. I remember lying there and I just nodded my head. I thought about it for about a minute then blocked it out.

The hope was to do surgery while I was in the hospital for the second lung collapse. The surgery, a lobectomy and wedge resection, would remove my upper left lobe and a portion of my lower lobe. Unfortunately the original scans showed calcium build up in an area of my heart. It was decided I needed to have the heart issue taken care of before the cancer surgery.

Had a heart stent put in. Had to be on a blood thinner for at least two months to make sure blood clots didn’t form on the stent. I then had to be off the blood thinner for a period of time. I have been seeing my oncologist every three months. Get CT scans every six months. Also see pulmonologist every three months.

The surgery
It was three months between time of diagnosis and my surgery. Seemed much longer. I was very worried the cancer would spread. When the time came for me to stop the blood thinner and no call came from doctor I was on edge. I felt they were forgetting about me. I made a call now and then to the lung cancer nurse navigator to remind them about me. I wasn’t that way all the time but I did have extreme anxiety at times. Earlier my family doctor had offered me something to help with my anxiety. I turned it down. Eventually my anxiety did reach a point where I did tell my PCP I needed some help.

Finally, the day of my surgery arrived. September 24, 2012. My parents had driven in from Colorado. Took me to the hospital. Other family would be joining them. At about 0730, the preparation began. I had no idea what kind of a journey was coming my way. I woke up October 8, 2012.

Nothing had gone as planned. What I know of that time is what I have been told by family and what I have read from my medical records. I was on a vent. I was combative and had to be restrained. I tried to pull vent out several times. I had lost enough blood I became anemic. Three days after the surgery I suffered respiratory failure. I developed an infection.

After waking up, I was very confused. I had and still have memory problems. I had to work on my penmanship. Didn’t have enough hand control to write. That has since returned. Couldn’t speak above a whisper due to a paralyzed right vocal cord from the vent. ENT told me there was a good possibility it would never come back. Ended up spending 6 months in a nursing home undergoing speech, physical and respiratory therapy.

Surviving and sharing
I find PatientsLikeMe to be a source of comfort. It is nice to know I can share my feelings and thoughts with those who have been or are going through similar experiences. It makes me stop and think about how I am doing. It is helpful to look at where I have been and see where I am and think about where I am headed.

Diagnosed June 2012 with lung cancer. Diagnosed April 2013 with uterine cancer. At last week’s checkup with pulmonologist, was shown something on my most recent scan. November 19, 2014 will be having bronchoscopy.

It has not been an easy journey. But when all is said and done, I am still alive.

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