The Michael J Fox Foundation (MJFF) runs a couple of special events each year called Partners in Parkinson's. This event aims to provide new tools and resources to help people with Parkinson's optimize care at every stage of the disease. This year, we were lucky enough to have the first of these events right here in Michigan in Grand Rapids!
My wife and I were able to attend this free event last Saturday (6/17). So for this installment of my blog, I wanted to report to you, my readers, some of the high points and content from this event. It's a longer than normal post, but I know it was very informative to me, and I hope to you also.
A lot of folks out there still think of Parkinson's Disease (PD) as an illness of the old. That, unfortunately, is the farthest from the truth. The first thing I really noticed right from the beginning of the event is that PD is not partial to ANYONE: young or old, rich or poor, race, creed or color. There were MANY more younger people there affected by the disease than even I would have thought. One of the MJFF moderators, Soania Mathur, was diagnosed at the age of 27! I also talked to a young lady hosting one of the vendors booths who also had been diagnosed with PD recently. I guess that is what really stood out for me - PD doesn't care what age you are, it can strike both young and old.
Also, I found that, especially with my DBS, there are many others out there in worse shape than I am, which not only made my heart go out to them, but also made me very glad that I had the resources available to me for such a life-altering surgery!
There was quite a good turnout at the resource fair - a large number of vendors were there. It was good to see this much support for those of us with Parkinson's. My neurologist's office at Mercy Health had a booth, along with other vendors such as the Michigan Parkinson's Association, University of Michigan Neurology, Michigan State University Health School, Rock Steady Boxing, the Parkinson's Foundation, and many others. All, of course, with various hand outs of helpful Parkinson's materials, along with the usual assortment of hats, T-Shirts, hand bags, and the like. I personally liked the MJFF pill holder (which I use now for containing my morning meds on the nightstand), and the MJFF Trial Finder orange brain squeezer (now I can carry my brain in my pocket!)
Of course, the meat of the event were the programs and presentations. So I will go through the ones I attended and give you an overview of the info I found interesting.
The Many Faces of Parkinson's Disease
The first presentation featured Soania as the moderator and a panel of three people from different walks of life that had Parkinson's. The idea was to highlight that no two cases of PD are the same; each person experiences the disease and symptoms differently. In this case, the panel featured a former DDS, a judge from Detroit, and a former IT manager (which struck a chord with me, of course!) The DDS illustrated how hard it is sometimes to diagnose PD, as he related he had been misdiagnosed for 10 years before finally getting the proper diagnoses! In fact, he was a lot like myself, where PD started in one hand, was misdiagnosed as something else, then only after a DATscan and meeting with a movement disorders specialist was the diagnosis of Parkinson's found.
All of the panelists stressed that exercise was the one common thing that kept them going and helped reduce their symptoms. Also was the idea of keeping a positive attitude, or as the IT gentleman said, "Live, encourage others, kick butt, and go out and do things!". Also mentioned was keeping up hope, focusing on what's important, and don't concentrate on your limitations but work around them.
Other points that were made:
When your meds wear off, take a needed break!
Challenges of the disease, such as fatigue, dyskinesias, etc.
The idea is to find the right balance while managing the disease and symptoms
Jump in! Get Involved!
Learn as much as you can (you and your family are your best advocate!)
And learn from each other:
Different therapies for different people
Use the internet (but be careful because there is a lot of bad info out there)
Go to events such as this to learn more and network with people
Then a question was posed on how to handle a new diagnosis of Parkinson's:
Get knowledgeable, but watch out for misinformation
Be active, NOT passive!
Exercise, exercise, exercise
Reach out to others for help and advice
Engage your partner and family
And remember: Yesterday is yesterday, tomorrow is tomorrow - have hope but live one day at a time to it's fullest!
The bottom line from this presentation was: Everyone is different, knowledge is power, remember to exercise, and attitude is key !
Seeing a Movement Disorder Specialist: What to Know, Ask and Expect
To begin this presentation, the moderator asked the crowd how many knew what a Movement Disorder Specialist (MDS) was. This shocked me as there were not very many hands held up! I personally believe this is one of the most important things one can do.
They began by talking about what a MDS is and why it is important to see one (see the link above for more info on this topic). Then they did a demo of a consultation between an MDS and a PD patient - the MDS was our own Dr. Barbara Pickut, the director of Mercy Health Hauenstein Neurosciences! This demo featured the four parts of an initial MDS consultation: Going through the questions from the Unified Parkinson's Disease Rating Scale (UPDRS) with the patient, doing a motor exam, talking about the non-motor symptoms of PD, and finally a focus on the caregiver.
An important observation from this was to always make the most of your appointment by being prepared and bringing your questions with you, along with being honest when answering those questions your MDS asks.
Our patient (a real PD patient) described how she had also been misdiagnosed for three years at first, and that getting the proper diagnosis was not only the key but also was validation that she was on the right track by going to an MDS. It was also mentioned that if you have had a DATscan, to make sure you get/keep a copy of that scan for yourself, and make sure your MDS has it also. Like many people initially diagnosed with PD, she had had problems with taking levodopa, and was having issues with it wearing off. Her MDS had begun to talk about DBS but she said she was not ready yet for that. I actually got to talk to her very briefly afterwards to describe my experience with DBS hoping I could ease her fears a bit. I even gave her a card to this blog, which I hope she is reading now! :)
Again, exercise was mentioned as one of the most important things to do for the disease, along with keeping your spouse involved. Lastly, remember to bring everything you need to that first consultation (scans, drug list, previous reports, and most importantly your spouse!), and be open to your MDS about everything. Only then can your MDS help you manage the disease in the best way possible!
Parkinson's Research: The Road Ahead
This, for me, was the most exciting and informative of the presentations. It featured the moderator with four different panelists representing research programs around the area.
The first part was basically Dopamine 101 - how dopamine works in the brain and what happens to it when Parkinson's takes over. I won't go into that here because, if you are a PD patient, you probably already know this (or for a detailed definition of dopamine, click here). Then they talked a bit about how the disease probably starts MUCH earlier than when one experiences the first symptoms, which are most likely non-motor symptoms. And where exactly does it start? (A lot of research is leading to the gut as the culprit). Then alpha-synuclein was discussed - this is the protein that 'clumps' up and folds in the brain of a PD patient which causes the dopamine cells in the substantia nigra to die off.
Possible causes were then discussed - Genetics? Environment? A combination of both? The bottom line is that no one is really sure - I think it was mentioned that only about 2% of cases were due (they believe) to pure genetics. And that most likely the main cause is really due to multiple issues and is probably cumulative.
Then our 'friend' (ha!) Lewy Bodies were discussed, which is really the result of the alpha-synuclein protein clumping. There is a lot of research going on in this area, from ways to prevent clumping, break up current clumps, stimulating our own antibodies to attack the clumps, and enhancing our own bodies 'garbage collection' system to rid of us the clumps. One important fact I heard is that we can't go down the road of simply getting rid of all our alpha-synuclein, because that protein is needed in the body. It is used in the brain itself to help transmit messages between brain cells. What we need, and what research is leading to, is to stop and/or get rid of the clumps, not the alpha-synuclein itself.
One of the research items being done now (currently in clinical trials) is using a drug (Inosine) to increase uric acid in the body - it has been shown that increased uric acid may help stop the clumping (or even get rid of the clumps). It's a fine line though, because too much uric acid can cause other problems like gout. So this research is working on increasing uric acid but not to the point of having too much. I've heard that if everything goes as planned, this may be available sometime in 2019!
Then new research was discussed about treating symptoms, basically via a better delivery of levodopa. Doing so would help keep a more constant supply in the bloodstream, thus helping with symptom management. This new research takes the forms of inhaled levodopa (which starts acting in 10-15 minutes!), Duodopa Intestinal Gel, and a form of constant subcutaneous (skin) delivery. Duodopa is already available, and trials are going on right now for the other delivery systems.
Research is also going on relating to the non-motor symptoms of PD, such as constipation, mood changes, cognative changes, sleep, etc. Hopefully new drugs and techniques will be available for these issues soon.
A question was asked about how exercise impacts the brain - I found the answer surprising. It turns out that exercising actually causes the release of brain chemicals that are neuroprotective (i.e. keep brain cells alive). Not only that, but it also causes the brain to produce more dopamine, and increases brain stem cells! Now I have even more reason to exercise each day! (one-two-three, one-two-three...)
Finally biomarkers and stem cells were discussed. There is much activity going on trying to find a way to diagnose PD a long time before one begins having symptoms. In fact, one of the panelists mentioned he hopes that someday soon they would be able to give a 'test' to a young person and it would indicate whether or not they might get PD later on; then begin treatment at that point (assuming a treatment is available at that time) - thus PD becoming just a 'managed' condition like high blood pressure or high cholesterol. As far as stem cells go, they are still working on this, but it is not easy; the PD brain already has become a'toxic' environment (i.e. already is damaged) when trying to place external stem cells there, so they have a hard time keeping them alive and growing into proper replacement dopamine cells. But research is continuing on this.
Bottom line: There is a lot of research happening - more than any time in the past! Therefore the hope of that 'cure' is more of a reality now than ever before!!
You, Your Loved One, and Parkinson's Disease
This was mainly for caregivers, so I took the time to go out and wander around the vendor area. And so, in a first for my blog, I am having a 'guest' blogger - my lovely wife and caregiver, Karen, write about what she found useful at this session!
Tom asked me to provide some information on the You, Your Loved One and Parkinson’s Disease session that I attended. Tom and I have been married for 20 years this month and try to work together as a team in his care. At this stage, and after the Deep Brain Stimulation (DBS), he is much improved and I wouldn't exactly call myself a caregiver. I am more of a teammate.
The session included a moderator and a panel. The panel included a woman who had been a caregiver for her mother with Parkinson’s for several years before her passing; now she is a caregiver for her father who also has been diagnosed. There was also a couple on the panel. He had been diagnosed previously and his wife talked about how she responds and helps him. Also on the panel was a physician.
A diagnosis of Parkinson’s Disease impacts not only the patient, but family, friends, coworkers, etc. I was more emotional about this news than Tom was. He was more prepared for the news, and I think had already suspected it.
There can be problems with adaptation of schedules around medication and meals - especially high protein meals that can interfere with levodopa absorption. Some feel fear and increased worry with the diagnosis. I did feel some helplessness before Tom had DBS. It just seemed like there should be something I could do to comfort his pain from the dystonia.
Some of the suggestions presented, that I try to use, included: building a network of support; maintaining a positive attitude; being a good listener; and attending support groups. It was suggested that signing up with the MyParkinsonsTeam website would be helpful. It took me awhile to understand that each patient is different, which is unlike other diseases. Since the DBS, Tom takes much less medication and I help him keep on schedule. Sometimes he feels so good that he forgets to take it!
I was glad to be able to attend the Partners in Parkinson's conference. There were many good topics. I wish there would have been more information or at least one session on DBS with its successes, advantages and some testimonies. I think more patients need to hear about it.
Keep Your Balance: Caring for Mind and Body with Parkinson's
The last session dealt with how a Parkinson's patient can build a health care team that addresses the many aspects of Parkinson's disease - from mobility issues to relationship implications. Again, Soania was the moderator, with a panel composing an MD, a PD Advocate, a home health person, and finally an RN from our own Mercy Health Hauenstein Neurosciences. In this team approach to the disease, your neurologist was likened to the 'quarterback' of your team - the one you see and interact with the most. But your team needs more members to help with maintaining your body and mind when you have PD. People such as speech therapists (LSVT loud was highly recommended), occupational therapists (who can come in and make sure your home is safe as the disease progresses); family members; social workers; your regular physician, and anyone else that is needed. Also discussed was how to use different specialists to address different needs, and using all of them together to come up with an 'individualized patient plan' just for you.
It was stressed that one needs to build their 'team' early on, because those that do have been shown to have better outcomes. Do things early; get ahead of it; pre-evaluate - since it is better to tackle issues beforehand rather than after.
Family members are also a very important part of your team. A lot of time they can act as a second pair of eyes and ears. For instance, they may very well see things in you that you yourself cannot see or don't notice; and therefore bringing them along with you to your neurologist appointments is extremely helpful.
Complementary therapies were also discussed. Things like acupuncture, massage, Tai Chi, and supplements can have their place in your program. With anything, though, always keep your neurologist informed of what you are doing and what you are taking; some things could interact negatively with your disease or meds. Bottom line was to be open minded but honest about these therapies. And make sure you do your research beforehand!
As mentioned before, education was highly stressed. Remember, you and you alone are your best advocate! Research and learn everything you can about your disease and all the therapies involved. This again, has been shown to result in better outcomes for patients.
One question asked was that it can be difficult to find resources, especially in rural areas. Usually it is larger cities that have movement disorder specialists; and transportation to and from there can be challenging. Also cost can be a factor, especially with health care these days. It was mentioned that there are people who can help navigate these kinds of obstacles such as counselors and social workers. Seek these folks out if this is an issue for you.
Finally, we all know that once we get a diagnosis like this, it can be OVERWHELMING! That's where a multi-disciplined approach helps. Some advice presented at the end of the session: Start building your team immediately; remember that everyone is different, so don't project others onto yourself; attend seminars like this; and most importantly, don't keep the diagnosis to yourself - there are many people out there that can help with your fears, doubts and such. YOU ARE NOT ALONE!
So, all in all, it was a very informative day! I learned things I didn't know before, and most importantly, I got to meet and network with others who are in the same boat as I am. That is always encouraging.
The next Partner's in Parkinson's event will be held in Orlando, FL on October 28. For more info in Partners in Parkinson's, you can go to the link here.
Thank you for reading... Till next time, keep up hope and stay healthy!