Several weeks ago I participated in a study for a drug company ad. I did not know ahead of time what I was being recruited to do, which is probably a good thing.
Before I continue, permit me a short rant: I hate TV drug ads. Really HATE them. Who wants to watch late stage baby boomers (us!) sitting on the beach holding hands or playing with their dog (always a Golden Retriever) while some guy whispers in a rapid fire undertone a list of possible side effects that includes possible head explosions and alien abductions? And then I am supposed to do what with this wonderful information? Go ask my doctor to prescribe it? Like she wouldn’t know without my asking? Has anybody ever actually done that (well, other than for Viagra)? Would you want to be friends with, or even converse with, anyone who did? And don’t get me started on the new disease acronyms they invent. Hey Big Pharma, here’s an acronym for you. STFU and lower the price of the drugs for us consumers.
So where was I? Oh, yeah, the study.
It was a suprisingly good experience and I will be curious to see what the ad finally looks like. The study was for a print ad for a Parkinson’s drug. I participated from the comfort of my home, using my computer with a video hook-up to the interviewer. The different concepts presented were interesting. I thought that only one of the six ads presented actually addressed what the drug was for. The others were trying to create an “image” for the drug. One showed a very healthy person with (of course) a Golden Retriever, another looked like a Beer ad, and yet another belonged in a Women’s magazine 50 years ago. They asked for my opinion and I was very candid about what I thought worked and didn’t work and why. I hope that they are actually listening to us when they create the final ad.
If you are asked to participate in a focus group study for a drug company, please say yes and make sure that they know how you feel about these ads. They really serve no purpose for us as patients. We get the information we need about new drugs and treatments from reliable sources on the internet and our doctors. We don’t need the drug companies to tell us what we should be taking. If their drugs really work to combat PD, we will know about them and ask for them without being subjected to these ads.
On April 11, we will celebrate the birthday of James Parkinson, M.D., who published his groundbreaking essay 200 years ago in 1817 on what was then known as “the Shaking Palsy.” His narrative reporting of six case histories is as readable as a 19th-century British novel, and has been called a “gem of the neurologic literature.” You can read the entire text here.
Last October, during Breast Cancer Awareness Month, I posted “Breast Cancer vs. Parkinson’s” to highlight the differences in approach to publicising these two diseases. I am repeating it here because Parkinson’s Disease affects so many of us, yet does not get the PR that a “sexier” disease like Breast Cancer does. We can and must do more to educate people about Parkinson’s, especially since the numbers of people affected are expected to climb rapidly in the coming years.
As a footnote to the blogpost, last month my daughter and I walked in a 5K for the Michael J Fox Foundation. We had a great time, but the number of people who came and walked was probably less than a 10th of the number who walk for Breast Cancer. And the same for corporate sponsors. We need to do much better.
Breast Cancer vs. Parkinson’s
Almost eight years ago, I was diagnosed with Parkinson’s and Breast Cancer in the same week. Obviously, it was a week when I wished I had just stayed in bed and hid under the covers. How do you react to the news that you have not one, but two major health issues that will be with you the rest of your life?
Much of the next six months remains a blur to me. I underwent a lumpectomy and radiation for the breast cancer. A neurologist put me on ever increasing doses of Requip, and my estrogen patch was taken away from me. All of this meant that I slept all day, was plagued by hot flashes all night and pretty much walked around in a fog all of the time.
Somehow I was able to come to terms with having breast cancer immediately. My mother had it, my sister had it. It is the disease that most women fear most. And it is the disease that is talked about everywhere. October is Breast Cancer month and there are a lot of stores that celebrate by producing Pink Products, or should I say Pink Profits? It doesn’t matter how useless the Pink Products are, we buy them anyway because it makes us feel like we are doing something positive. Celebrities talk with pride about recovering from breast cancer. There are rallies and walks to raise money. I even corralled my friends to walk with me as a team for the Revlon Breast Cancer Walk that first year. We wore our Pink boas with pride as we finished our 5K walk and entered the field at the Los Angeles Coliseum where the Olympics were held. We were Champions in Pink! Breast Cancer is fashionable.
But Parkinson’s is another story. It was hard to come to terms with that diagnosis. I wasn’t that old (57), I wasn’t a man, I didn’t shuffle, and I didn’t know anyone else with PD in my family or circle of friends. It was something my friend’s parents had, but they were much older and didn’t move very well. There were no Parkinson’s products for sale in the department stores during Parkinson’s Awareness Month. I didn’t even know there was a Parkinson’s Awareness month until this year. Parkinson’s events were not well publicized. After all, who wants to go to an event where everyone is shaking, drooling and shuffling? Parkinson’s is definitely not fashionable.
I was active, playing tennis, going to yoga, traveling and enjoying life as much as possible. I didn’t have time for a chronic degenerative disease. I just had a tremor, so I tried to hide it. And I kept trying, but after a while, people started to notice. I thought that if I didn’t say anything, it didn’t exist. So I did what my friends and I call the “Parkie hand-hiding strategy”. You know the one where you hold your shaking hand, sit on it, stick it into a pocket or purse, or do some other strange maneuvers just to prove that it isn’t shaking.
But of course, that didn’t work and I was only fooling myself. So why couldn’t I admit it to myself? Why couldn’t I tell others? It took a lot of therapy and writing my personal narrative for me to confront what I called the “Elephant in the room”. Once I started to write my narrative*, which only my therapist was privileged to read, things started to change. I started to write about life with PD. But only for other Parkies. The rest of the world still didn’t need to know. And then one day, I made a mistake. I posted something meant for my Twitchy Woman Facebook page on my public Facebook page. And the world didn’t come to an end. Wow! I was outed. And it was okay.
So now I have embraced my PD. There is a wonderful world of people in the Parkinson’s community that I have met. The time I spent last month in Portland at the World Parkinson Congress was an eye opener. I was able to meet some people who I have corresponded with through this blog. I talked to doctors, therapists and researchers who valued my opinion. I spent time with new friends and old friends, looking for answers and camaraderie. We have a common bond and we understand each other. And we don’t all shake, drool or shuffle. In fact, we spent a lot of time working to dispel that image. We all have the Elephant in the room, reminding us that life is not the “normal” that it used to be. But that elephant is getting smaller and smaller, and one of these days, hopefully very soon, it will be banished from our lives.
First, about sleep problems. I found a Yoga Nidra meditation by Jennifer Piercy that I really like. It is called Yoga Nidra for Sleep and can be found on a website called DoYogaWithMe. I don’t think I have stayed awake until the end of the meditation yet. Now I just need my dog to sleep later in the morning so I can sleep in. Someone else mentioned that they like Jennifer Reis’s Yoga Nidra CD. I have not checked that one out yet.
This past weekend, the Michael J Fox Foundation hosted the Parkinson’s Policy Forum in Washington, DC. 200 members of the Parkinson’s community from across the US had the opportunity to meet with their congressperson and/or Senators after an intense day of training. Darcy Blake has written about her experience in her blog post Parkinsons Women Support. Thank you Darcy for your summary of the forum. If you would like someone to speak to a group about advocacy and lobbying for PD, check with MJFF to see who attended from your area.
Finally, I will be working with the Parkinson’s Disease Foundation for the next two years on a program titled “Women and PD Teams to Advance Learning and Knowledge,” or Women and PD TALK . PDF received a $250,000 PCORI (Patient-Centered Outcomes Research Institute) award for this program in an effort to address long-standing gender disparities in Parkinson’s research and care. The press release went out yesterday and you can read it here.
I am very excited to be a part of this project. Multidisciplinary teams, which include experts in the patient, research, and health care communities, will be charged with identifiying women’s needs and prioritizing solutions. 10 regional forums, designed to educate and collect the insights of women with Parkinson’s, will drive the project. Experts will utilize these insights to develop an action plan to change the landscape of Parkinson’s care.
I am looking forward to sharing more with you as we proceed over the next two years with this exciting project.
Very important information from the Foxfeed Blog about upcoming health care changes. If you do not already receive these emails from Fox, please sign up today so that you know what is happening with your health insurance. It is very important that pre-existing conditions, such as Parkinson’s be included, as well as eliminating annual and lifetime caps on coverage. Write or call your Senator and Congressperson and let them know how you feel about this. If you don’t know how to contact them, go to the websites for Congress and Senate
I have called and written my congressman in the past about supporting PD issues and even got a return phone call from the office saying that he was joining the Parkinson’s Coalition in congress, so they do listen.
I have recently read that phone calls are more effective than emails or petitions. A friend posted this advice from a high-level staffer on Facebook and it makes sense. Here it is with a few edits:
1. The best thing you can do to be heard and get your congressperson to pay attention is to have face-to-face time – if they have townhalls, go to them. Go to their local offices. If you’re in DC, try to find a way to go to an event of theirs. Go to the “mobile offices” that their staff hold periodically (all these times are located on each congressperson’s website). When you go, ask questions. A lot of them. And push for answers. The louder and more vocal and present you can be at those the better.
2. But, those in-person events don’t happen every day. So, the absolute most important thing that people should be doing every day is calling.
You can make 6 calls a day: 2 each (DC office and your local office) to your 2 Senators & your 1 Representative.
The staffer was very clear that any sort of online contact basically gets immediately ignored, and letters pretty much get thrown in the trash (unless you have a particularly strong emotional story – but even then it’s not worth the time it took you to craft that letter).
Calls are what all the congresspeople pay attention to. Every single day, the Senior Staff and the Senator get a report of the 3 most-called-about topics for that day at each of their offices (in DC and local offices), and exactly how many people said what about each of those topics. They’re also sorted by zip code and area code.
So, when you call:
A) When calling the DC office, ask for the Staff member in charge of whatever you’re calling about (“Hi, I’d like to speak with the staffer in charge of Healthcare, please”) – local offices won’t always have specific ones, but they might. If you get transferred to that person, awesome. If you don’t, that’s ok – ask for their name, and then just keep talking to whoever answered the phone. Don’t leave a message (unless the office doesn’t pick up at all – then you can…but it’s better to talk to the staffer who first answered than leave a message for the specific staffer in charge of your topic).
B) Give them your zip code. They won’t always ask for it, but make sure you give it to them, so they can mark it down. Extra points if you live in a zip code that traditionally votes for them, since they’ll want to make sure they get/keep your vote.
C) If you can make it personal, make it personal. “I voted for you in the last election and I’m am concerned about the changes in the Health Care laws…..
D) Be clear on what you want – “I’m disappointed that the Senator…” or “I want to thank the Senator for their vote on…” or “I want the Senator to know that voting in _____ way is the wrong decision for our state because…” Don’t leave any ambiguity.
F) They may get to know your voice/get sick of you – it doesn’t matter. The people answering the phones generally turn over every 6 weeks anyway, so even if they’re really sick of you, they’ll be gone in 6 weeks.
This is my last post of the year. And #99! Beginning next week (and next year) with #100, there will be a few changes in the look of my blog page. Thank you for following my ramblings and for all of your feedback and support. But most of all, have a wonderful, healthy and happy 2017!!!
Our Los Angeles Women’s support group met last week with speech therapist, Lindsey Unger, MS CCC-SLP, who spoke to us about LSVT™. For those of you not familiar with LSVT™, it stands for Lee Silverman Voice Treatment. The program was developed by Lee Silverman, who has Parkinson’s, and a speech therapist, in order to improve her speech, which had gotten very soft.
It is recommended that you start LSVT™ soon after you are diagnosed with Parkinson’s, even before your voice gets soft. And especially before DBS surgery.
Communication is so important, and we don’t think about it until we have difficulty with it. 89% of people with PD have problems with their voice and speech, but only 4% get help. What is the barrier to people getting the help they need? People are referred to Physical Therapy (PT) and Occupational Therapy (OT) at a much higher rate than Speech Therapy. LSVT can help most people with Parkinson’s. Even people with cognitive difficulties can participate and benefit from LSVT. We need to talk to our doctors about prescribing Speech Therapy more often.
Some of the most common voice symptoms are:
Hoarse voice, soft voice, breathy sounding, monotone pitch – people will assume that the person is not emotional because of their voice. Rushes of voice, much like a stutter, difficulty getting started with speech.
Why do these problems occur:
Reduced internal feedback in the brain – feeling that you are loud enough, but really are not. A person with PD has a voice level on average 3-4 decibels lower than normal, which translates to a 40% softer voice, often making it difficult for the person listening to you to hear you.
Vocal chord problems – this should be looked at by a doctor before starting therapy.
Inadequate muscle activation, rigidity, tremor and other Parkinson’s movement issues can also cause speech problems.
The primary goal of LSVT™ is for the patient to use his or her own voice, in a louder manner, in daily communication with long-term carryover; our goal is to
help a patient become independent with using their LOUD voice so that the skills gained through therapy have become ‘automatic’/to establish a patients new concept of what their ‘normal’ sounds like. So how do you improve your voice? 4 one hour sessions a week with a speech therapist are recommended, for a total of 16 consective sessions over 4 weeks, along with practice at home 2 times a day for about 15 minutes. It is an intensive, high effort program. You must be prepared to work hard.
Some of the exercises include:
A big inhale, exhale a loud “aaaaaaaah” as long as you can
Pitch glide – from low to high and from high to low , the goal is reach 80 decibels (db).
Multiple repetitions are recommended, 15 or more twice a day. It is a workout for your vocal chords and can be exhausting. This is necessary to make changes in your brain. Eventually you move on to speaking at different loudness levels. Group therapy is good because you get feedback from others about how you are doing. LSVT can help most people with Parkinson’s. Even people with cognitive difficulties can participate and benefit from LSVT.
How much effort does it take to get loud enough? You have to measure the loudness levels as you practice so that you know how much effort you need to make to be heard in different environments. By getting loud, you have to use all of your muscles. You use your diaphram to open up your chest and improve your posture. You have to move everything to get that loud. Eventually getting loud will create a change and you will get less hoarse. There is an automatic improvement after doing the exercises. LSVT also improves movement of vocal chords, swallowing, coughing and reduces aspiration risks. It is important that you keep doing the exercises and take a refresher course with a Speech Therapist every two years.
There are some other things that can help you improve your voice. Voice amplifiers, like the Chatter Box, can be used if LSVT is not an option. It is not a fix, it just compensates for lost voice. iPads can be used for communication. There are bracelets that can monitor your decibels and light up when you are not loud enough. However, external cues don’t work as well with PD.
Finally, Lindsey demonstrated how well LSVT works with Barbara, who had DBS and has speech difficulties. Barbara had gone to a speech therapist for LSVT a while ago, but had not continued doing the exercises and her voice regressed. After doing just a few exercises with Lindsey, there was a dramatic improvement in Barbara’s voice. Needless to say, we were all impressed.