Are you participating in any clinical trials?

[Jorge]

I have participated in 3-4 trials over the last 3 years.  All have been non-invasive and relatively short term.  I am still independent and want to contribute where I can as a fairly new retiree.  Here in Las Vegas we are blessed with the Cleveland Clinic Lou Ruvo Center For Brain Health as well as some trial activity over at UNLV in the Kinesiology & Nutrition Sciences Department.   Obviously, anything out of town and longer term would be more demanding on PD patients with more advanced cases who need to travel with a caregiver.  I have not had one regret to date.

Pros   Making a contribution towards stopping the progression of PD    Meeting researchers/staff and learning alot about PD     Learning more about your own individual case (especially if you live in rural areas where access to an MDS is not always possible. )

Cons  The burdens of travel,  scheduling demands for those still working,  some folks get too anxious with test events like MRIs etc.   Out of pocket costs can be burdensome to some if the trial doesn’t cover a good percentage of travel costs for long distance events.

Personally I would confer with my MDS before volunteering for long term invasive tests.

I recommend trying at least one if able.

 

 

[Gail Dons]

About participating in clinical trials: We want those new and better treatments. We want something that is neuroprotective. But to get these things, they have to be tried out on people – real people with Parkinson’s. If we don’t, who will? I have participated in quite a few trials – as many as I find for which I qualify. Not for the money, but because in the past some PwPs went out of their comfort zone and inconvenienced themselves by being a part of clinical trial, and now we have Sinemet…Azilect…amantidine…Apokyn…ropinirole…and the list goes on.

All trials are not medication trials. I’ve done some on exercise, eye movements, measurement of brain changes during activity, gut microbiome studies, genetics. There are a lot out there. Some of the testing is weird (try having an MRI with your head held still in a cage and you are playing a video game!) I’ve given samples of every liquid or solid my body produces, manipulated little washers and screws into patterned stacks, been videoed as I walked and talked, told stories and repeated numbers backward until they got so large that I couldn’t, had my eye movements recorded during different tasks, and taken every cognitive test known to man – I can probably give you 20 words ( in 1 minute) beginning with any letter of the alphabet, except maybe x or z. I have permanently memorized those 5 words in the MOCA test that they have you recall at the very end.(For those of who who freeze with those memory things, they are “face, velvet, church, Daisy, and red!)

Honestly, it has been a lot of fun, and I’ve learned to relax and not be embarrassed if I can’t remember which square that doggone Apple is hiding under! The research assistants are really sweet kids who explain things so well, and do everything they can to make the study easy and enjoyable. They’re glad to have you in their study! So please, think of participating in clinical trials not as a risky, scary thing, but as an adventure – and an immeasurable help to PwPs now and in the future!

[Mary Beth Skylis]

Jorge,

Thank you for your thoughts. Yeah I think my Dad’s biggest concern is that he doesn’t want to have to rely on anyone else to drive him to and from his appointments. But he likes the idea of letting people learn from his disease. And he’s very optimistic that researches will find ways to assist current and future PD patients. Have you seen the results of any of these trials yet?

[Mary Beth Skylis]

Gail, thank you so much for your thoughtful feedback. And for your contributions to science. As the daughter of a man who has PD, I’m very grateful for the people who came before him.

I’m curious, did you see any long-term effects from any of your trials? It sounds like they could’ve been testing for things like neuroplasticity with the memorization of strange numbers and things like that. Do you feel like you remember things more easily? Have you made any discoveries through the course of these trials?

[Gail Dons]

Hi Mary Beth!
The most invasive things I’ve actually done (so far) have been sigmoidoscopy and a spinal tap. That’s nothing compared to the courageous individuals with advanced PD who are testing cerebral dopamine neurotrophic factor, and allowing them to inject it into their brains! Yet if (the big IF) this is effective, it is a possible disease modifying therapy. I noticed that all of those volunteers who completed Phase 1 have chosen to participate in the next phase. Wow…
Back on track, I have never had any long term adverse effects from any of these studies. (after the sigmoidoscopy I could even whistle out of both ends! :-). I do think that the mental gymnastics involved in some of the testing has been beneficial to my own memory and cognitive skills. You know what they say, “if you don’t use it, you lose it!” I’ve found that I could actually do more than I thought I could, and that has encouraged me to reach even further. I think I am more anxious about a failing brain than a failing body. Because of what I’ve learned, I’ve downloaded the app Lumosity, which has many “games“ helpful in developing memory, executive function, neuroplasticity, and other skills that are really important to good brain function. They are sometimes frustrating, but as I’ve improved p, I think it really has helped! In one of the last research studies, my husband was also being tested as a normal volunteer. I found out later that I did even better than he did!
Jorge, it takes a long time to see results from many of these trials because often patients need to be followed for a long time to see if the observed effect persists or is a flash in the pan! I did find out that in one of my gut microbiome studies I had ended up getting the placebo “food”. Darn! I’d hoped for some relief from constipation!

[Gail Dons]

Hi Mary Beth and Jorge!
The most invasive things I’ve actually done (so far) have been sigmoidoscopy and a spinal tap. That’s nothing compared to the courageous individuals with advanced PD who are testing cerebral dopamine neurotrophic factor, and allowing them to inject it into their brains! Yet if (the big IF) this is effective, it is a possible disease modifying therapy. I noticed that all of those volunteers who completed Phase 1 have chosen to participate in the next phase. Wow…
Back on track, I have never had any long term adverse effects from any of these studies. (After the sigmoidoscopy I could even whistle out of either end! ?). I do think that the mental gymnastics involved in some of the testing has been beneficial to my own memory and cognitive skills. You know what they say, “if you don’t use it, you lose it!” I’ve found that I could actually do more than I thought I could, and that has encouraged me to reach even further. I think I am more anxious about a failing brain than a failing body. Because of what I’ve learned, I’ve downloaded the app Lumosity, which has many “games“ helpful in developing memory, executive function, neuroplasticity, and other skills that are really important to good brain function. They are sometimes frustrating, but as I’ve improved my scores, I think it really has helped! In one of the last research studies, my husband was also being tested as a normal volunteer. I found out later that I did even better than he did!
Jorge, it takes a long time to see results from many of these trials because often patients need to be followed for a long time to see if the observed effect persists or is a flash in the pan! I did find out that in one of my gut microbiome studies I had ended up getting the placebo “food”. Darn! I’d hoped for some relief from constipation!

[Mary Beth Skylis]

I love Lumosity! That’s a great idea. I hadn’t thought about using it for a tool to combat Parkinsons. Do you have any favorite games?

I actually recently learned that even when you receive the placebo effect, you often still receive positive effects from your “medication”. This makes me wonder about the brain’s capacity to heal us.

Wow! You’ve been really involved in these studies, Gail. Thank you for being brave and working with researchers to learn about PD. Where do you go to find about clinical trials you can participate in? Is that information your doctor(s) share with you?

[Mark]

So far, I have participated in 4 and consider them to be among the most important and rewarding things I have ever done.

 

[Deborah faculak]

I have participated in 4 studies at Henry Ford West Bloomfield. I totally agree with Gail, if we want new medications and treatments, they first have to be tested on people. I’m retired I have the time, so I’m very happy to participate in studies I qualify for.
The study nurses I have worked are more than willing to work with my schedules,as to days and times. And I feel like I’m helping PWP and myself too. I have never felt pressured to continue to the next phase, but I have elected too go on. I am now taking Gocovri for dyskinesia it was finally approved the end of 2018 …… that was first study I participated in.

The Michael J Fox Foundation also has online studies he could participate in.
Good Luck to both of you

 

 

 

 

[Mary Beth Skylis]

Thanks for your feedback, Deborah! Do you feel like you’ve learned anything about yourself or Parkinsons through the course of these studies? And which study has been your favorite so far?

[Mary Beth Skylis]

Mark,

Wow! I’m so happy to know that you feel so strongly about those studies. What do you think it is about them that makes them feel so meaningful?

[Gail Dons]

Deborah is right, the Michael J Fox TrailFinders is a good place to look for clinical studies. Also, if you have any medical schools in your area, often on their website there will be a link to the various clinical trials they are running. You usually can search by disease or condition.
I am in Chicago, and both Northwestern and Shirley Ryan Ability Lab have educational symposiums on Parkinson’s disease. Very often at those events, there will be tables with papers describing the various research studies that are looking for volunteers. You could even place your name and contact information in a list so that other researchers can see if you qualify for their study and contact you. When I visit my MDS,I always ask her if there are any Studies that need volunteers.
Lastly, clinical trials.gov is the US National Library of Medicine database for clinical trials that are going on in this country. You can search by disease, and buy your location and how far you are willing to travel.
Even if you don’t seem to be trails running in your area, there are some trials where your participation is online only, so you do need to study descriptions carefully before you decide it’s not an option. There was this one where they actually used your computer’s camera to video you as you do various things. Another involved typing on your own computer while they measured strike time. Besides medication, studies are going on to see What are the most convenient ways evaluations can be done without always having to traipse to the doctors office!

[Mary Beth Skylis]

Thanks for all of the tips, Gail. That note you wrote about online trials is particularly interesting. I wonder if my Dad would be interested in participating.

[Bert Shure]

Friends:

I’ve participated in several research projects since being diagnosed six years ago. I haven’t tried out any new medicines or treatments.

Most of the opportunities came from the Fox Foundation. https://www.michaeljfox.org/join-study I get emails when they have a research study that might be a fit for me!

I fill out their quarterly survey and bi-annual surveys from the Brain Registry.

My neurologist has told me about some interesting research projects. I had an MRI at the local VA while playing brain games.

I have also given DNA and blood.

I do get a sense of satisfaction from these tasks.

Cheers,

Bert

[Mary Beth Skylis]

Bert,

Thank you for your contributions.

Has your experience been invasive? I think that’s my Dad’s greatest concern. He doesn’t want to be poked and prodded all the time.

 

[Bert Shure]

Hi Mary Beth:

I gave blood to two different studies.

I gave DNA to 23andme.com and got a free account.

These are the only invasive studies I have done.

Cheers,

Bert

[Mary Beth Skylis]

Ah! My Dad (diagnosed in 2013) did 23 and me as well. I hadn’t thought about using that in relation to Parkinsons.

Have you enjoyed your experience with those studies?

[laura seymour]

Good to read responses from people from Michigan (my former home)!  I have participated in all of the  online trials that were offered to me through Michael J. Fox’ s foundation as others replying have.  The 23 and Me only required saliva.  I had a blood test when I underwent a DAT test and agreed to donate that blood to research at OHSU in Portland, OR.  The only thing about the online surveys is that they can take a lot of time, but you can stop and sign in again at another time to continue answering the questions.  I find this to be interesting and worthwhile as any information we can give will most certainly help others with PD in the, hopefully, near future.

[Gail Dons]

Ohmygoodness! Just had so much fun doing a clinical trial this week. They are writing a grant to evaluate the use of exoskeletons in gait training. I got fitted for a very compact single joint exoskeleton and then walked around forward and backward, up stairs, etc, while the exoskeleton boosted my hip flexors so I lifted my knee higher and straightened it better with each step. After only 45 min training, I walked to the METRA without stumbling a single time! I can hardly wait to try out the 2-joint exo next week!