I'm moving to beat Parkinson's disease!

I've joined Moving Day, A Walk for Parkinson's, to honor people living with Parkinson's, those who love them and those that are working to end this disease.

Every dollar I raise goes a long way in helping the Parkinson's Foundation fulfill its mission of improving the lives of the one million Americans with Parkinson's. Please support me in this fight by making a donation. Your generosity will help raise awareness, more funding and more understanding of a disease that affects so many of our family and friends.

Together, let's make a life-changing difference! 

Thank you!

Tim 

Meet Tim Nett 

Meet Tim Nett, a Hartland resident who has learned to see aspects of his early onset Parkinson's diagnosis to be a gift. Diagnosed in 2018 at age 47, Tim recognizes the many physical and mental struggles he’s endured the past several years, but also knows Parkinson’s disease (PD) challenges him to be the best person he wants to be.

With the progression of symptoms, including tremor, stiffness, and mild dyskinesia (involuntary muscle movements), Tim has remained positive and has embraced change. On days when it would be understandable to isolate or retreat from responsibilities, Tim laces up his sneakers to exercise, works on his landscaping and construction business, and schedules gigs where he entertains audiences with his saxophone and vocals (quite an accomplishment, considering, for years, he avoided performing publicly).

Tim has always been athletic and, in 1993, set the triple jump record (and several others) as a member of the St. Norbert College men’s track and field team (which still stands.) He was inducted into their Athletic Hall of Fame in 2005. Today, he often walks, sails and kayaks. Parkinson’s has exposed him to new sports, like boxing, and to new supportive friends also living with PD.

In the spring of 2023, as a way to unite with these friends and the larger Parkinson’s community, Tim joined classmates from Rock Steady Boxing at Neuro Path Wellness for Moving Day Milwaukee, a walk to benefit the Parkinson’s Foundation. Studies have shown that exercise and physical activity can improve gait, balance, tremor, flexibility, grip strength, motor coordination and mood, plus possibly slow Parkinson’s disease progression.
Prior to Moving Day, Tim broadly shared his personal experience with PD and fundraised for the cause. Inspired by his story of strength, courage and positivity, Tim’s network donated generously in his honor. Tim raised $3,610, claiming the title of top fundraiser for Moving Day Milwaukee 2023.
Tim’s journey took a significant turn this past November when he underwent deep brain stimulation (DBS) surgery, a decision supported by friends and family. Post-surgery, Tim experienced countless challenges, but also remarkable improvements—reduced tremor, enhanced range of motion, and sharpened fine motor skills.

To support the Parkinson’s community and raise awareness of PD, Tim is again preparing to participate in Moving Day Milwaukee on May 18, 2024 in Wauwatosa. He kicked off his fundraising campaign when he announced his plans to undergo DBS surgery, and already he’s surpassed his $3,000 fundraising goal (he achieved that in just one week). To date, he’s amassed over $6,200 for the Parkinson's Foundation Midwest Chapter and has reset his goal to $8,000 hoping to be one of the top 25 Individual Participants in the United States. (In total for 2024 he raised $12,267, and was one of the top 10 US participants for donations!)

Tim's story is one of resilience, hope and community support. He is determined to share his experiences and make a difference in the lives of those facing Parkinson's through his daily interactions as well as he embarks on a new career search---forever changed by Parkinson’s----hoping to help and give back to others who might be faced with similar challenges.

If you would like to support Tim and Moving Day, A Walk for Parkinson's, to honor people living with Parkinson's, follow the link: https://secure3.convio.net/prkorg/site/TR/MovingDayEvent/General?px=1785856&pg=personal&fr_id=5146

If you would like to review the more personalized and detailed version of Tim’s story from diagnosis, DBS Surgery and to the present, follow the link above and scroll down to “This is my story.”

Thank you for your consideration!

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Fabulous Wisconson Article, March 2024: https://fabulouswisconsin.com/fabulous-people/fabulous-people-tim-nett/#google_vignette 

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This is My Story  

December 13, 2019 – Original Facebook Post
I’m not sure who all knows about my circumstances so I thought I would share briefly. Approximately 2 years ago (Fall of 2017) I was having my morning coffee, I noticed a slight tremor in my right hand. Shortly thereafter I noticed that my handwriting was getting smaller as I seemed to be losing some dexterity in my right hand. (My mom’s words echoed in my head. “I used to have such nice handwriting.”) I also began inadvertently right clicking my mouse and pressing keys on my keyboard that were not intended. It was as if the fingers on the right side of my right hand were “drooping” a little. The tremor worsened and had progressed down through my leg. As I walked, I started to notice my right shoe catching on the carpet for some reason. It felt like what happens when you wear shoes that are ½ size too big. I noticed my right foot wasn’t picking it up completely and I felt “stumbly.” Only my right side has was being affected. My arm was not swinging when I walked. And I could see it in my face and smile. My right side was “drooping” and less animated.

Shortly after (Spring of 2018, at age 47) I was diagnosed with Parkinsonism and/or potential early onset Parkinson’s disease. My mom had Lewy Bodies with dementia which is characterized by some similar symptoms. She passed away in 2000 at age 68. Both are degenerative neurological diseases (affecting both motor and non-motor systems over time.) Neither have a cure.

My HR role and employment of 12 years with Ellsworth would end 2 months prior to this post, in October of 2019, and I was undergoing a breakup of a long distance and long-term relationship, so it was the trifecta of life events: career, relationship and health!

The good news is that at the moment, my symptoms are stable and I can make health my priority. I’m on several medications for my tremors/symptoms. The other physical symptoms are best managed with exercise, so I attend a boxing/exercise class (Rock Steady https://www.rocksteadyboxing.org) several times a week. Instead of “Team Nett” https://athletics.snc.edu/sports/2020/12/9/mens-track-field-records.aspx?path=mtrack I earned the nickname “Seam ripper.” (Of course, there is a story…) I’m sure Rocky would be proud, but “Eye of the tiger” has taken on a whole new meaning (the “anthem that we blast) as we roll into the annual Watertown Riverfest Raft Race to defend out title! (https://www.watertownriverfest.com/events/in?fbclid=IwAR1W5wDxyhbxDnLH_CC_xYwb2v2EUOJPqP-OYdASr2rBaD_NQ2XwS2wRowM) And was we do our stretches, work on our coordination, box, range of motion, dexterity we sometimes end with a dance. I can’t help but laugh/note the irony when we do the “Hokey Pokey” and “shake it all about,” that’s just a gimme for this group. The other good news is that I can still do everything I have always done before…I just hurt/ache (a lot) more than I used to, don't sleep well, am very stiff in the morning and shake a little if you are watching closely. But we never really know what life has in store for us as we all are getting older, 1 day at a time. Time is precious, and I plan to make the best of it. Because “I’m not dead yet!” https://www.youtube.com/watch?v=UZBn18FaLI.

April 27, 2023 - Update
It's been 3.5 years since this original post and so much of what I shared originally is still applicable. I still shake. My meds have increased and exercise is important! I'm still able to do much of what I always have been able to, but in some cases it's just more challenging. The silver lining with this diagnosis is that it has motivated me to do a things that I may not have otherwise. Talking in front of a group has always been terrifying for me and now I play my sax and sing 1-2 shows a month in front of live audiences! I've flipped and fixed up 2-3 houses, competed dozens of landscape projects and taken classes in landscape design! I've spent more time kayaking and sailing (faster!) than I ever have before. It's been one of the most trying and productive periods of time in my life since this all began. I’ve also learned without my medication, I’ve pretty much lost the dexterity and fine motor skills to hold a fork, type on a keyboard or play the saxophone. I had a brief period of time where I weaned off of all my medications and learned that I had lost physical capabilities beyond what I knew. The good news is that my medication was masking these losses and have been enabling me to function “normally” (and I am thankful that these medications work are even available.) The bad news was, well, it was rather alarming to realize how bad my symptoms really were/are and how dependent I now was on my medications to function.

May 6, 2023 – Moving Day Milwaukee
This was the first year Participating in Moving Day. It is a National Event promoted by the Parkinson’s Foundation and a chance to speak up about Parkinson’s disease and move others to take action. It is a movement for change—towards more awareness, more funding, and more understanding of a disease that affects so many of our family and friends. I was overwhelmed by the support and responses from friends and family and honored to provide live music during for the various sponsors and participates of the event. Even more so, I was shocked to hear that I was the Top Participant/Walker for donations in Milwaukee! And by “I was” I mean “you all!” You all contributed over $3,610, which was incredible! I cannot say enough about what that will do for the cause as well as what it has meant to me personally to have that kind of support. Thank you!

August 25, 2023 – Neurology Appointment: Brain Surgery Recommendation
Over the months leading up to this appointment my symptoms continue to progress. My tremor is more pronounced and “on” and “off” periods with my medication are more evident. I’m experiencing more stiffness and rigidity in my body especially in my neck and shoulders on a daily basis and also some mild dyskinesia (involuntary muscle movements.) I am not boxing as regularly but continue an active lifestyle walking, sailing, kayaking, landscaping/construction, performing monthly with my saxophone, etc. (Experienced the enjoyment of performing live and the excitement of the crowd and the frustration of being live trying to hold the microphone steady in 1 hand and a harmonica in the other during a time when my meds have worn off and I’m shaking in front of the crowd. But I digress…) What is significant about my appointment on 8/25 is that I learned that I was a suitable candidate to be considered for Deep Brain Stimulation-DBS (a procedure that can help stabilize the abnormal areas of the brain with electrical pulses, reducing symptoms.) What makes me a good candidate is my age, that I am healthy, that my brain responds to the levodopa medications but are currently losing their effectiveness (I’m on a high dose and it wears off before the next dose can be taken.) DBS can help tremor, rigidity, and slowness of movement caused by the death of dopamine-producing nerve cells responsible for relaying messages that control body movement. The more I research the procedure, the more I realize that I seem to be an ideal candidate for the surgery. As I talked to people who either had it or knew something about the procedure, I continued to hear positive things. One person even commented “it’s like winning the lottery.” I hope it is because I’m going to find out. I was excited and somewhat puzzled (why more people haven’t had the surgery) as I spent the next couple months preparing for the procedure. Preparation included a physical, a complete blood count, MRI, CT scan, video evaluation by my neurologist “on” meds and “off” meds, evaluation by a physical therapist “on” meds and “off” meds, a psychological evaluation and consultation with the surgeon! And then I tried to wait patiently for what was to come next.

November 29, 2023 – Brain Surgery Tomorrow! & THANK YOU!
I debated about opening my post with “Brain Surgery Tomorrow” but, the way I see it I may never (and truly hope I never) get the opportunity to open with a line like that again! As you can see, I haven’t lost my sense of humor. Quite frankly it’s one of the ways I’m able to cope. The work is done and “funny” is all I’ve got left. Which is way better than fear! So, this week has been a little bit like “Deep thoughts with Jack Handey” only with some legitimate “Deep thoughts” lol!

I don’t have the words to convey the gratitude I feel toward all of you who have that have reached out to me this week. I have heard from all 9 of my siblings (yes, I’m the youngest of 10), my god parents and extended family, close friends, my former employer and former bosses, co-workers, fellow boxers, acquaintances and a few people I don’t know/never met (e.g. like Rick, a retired child neurologist M.D., who had the brain surgery and we talked for over an hour!) The conversations, texts, emails, calls and donations have been priceless, thank you! I will respond with an update on my surgery as soon as I am able.

November 30, 2023 – Deep Brain Stimulation Surgery
I have a lot to be thankful for this year as I have for so many years. More specifically I am thankful for Tommy Nett, being a part of his journey and watching him grow into the fine young man he has become. I am excited for his recent engagement to Layla and to see where their future takes them! Also, for Tanya. She has stood by my side through the years showing a grace and patience with a smile and optimism that is unmatched. She continues to walk this journey with me through all of the ups and downs (including all the emotions I bring to it.) I don’t know how I’d make it through without her!

My surgery is at St. Luke’s in Milwaukee. It is scheduled for the morning and should last between 3-4 hours for both parts of the procedure and overnight for observation. Hopefully my recovery will be minimal. Patients usually “feel better than normal” as a result of the procedure, which can last “a couple days to weeks. This temporary effect is a good predictor of the overall outcome.” I’m hoping for not only a reduction in medication (see pictures) but an improvement in symptoms like tremor, slowness of movement, dyskinesia, rigidity and indirect symptoms (neck pain, sleep, neck pain, mood.) Thanks for all those who offered to be present and/or help. Your thoughts and prayers are appreciated! I will hold onto “hope” and “reflect” as I do with any big event (or daily event for me! )

Here is one of the better summaries of the procedure: https://mayfieldclinic.com/pe-dbs.htm#:~:text=A%20DBS%20system%20has%20three,device%20that%20creates%20electric%20pulses.

My Current Tremor - Nov of 2023: https://youtube.com/shorts/5O22vbDaF0Q

Surgery Follow-up
I want to start out by thanking everyone for their thoughts, prayers, texts, calls, visits and support over the previous weeks! You ALL have been an important part of my recovery! Thank you!

I went into surgery at 8:30 a.m. and it lasted about 5 hours. It was about 2:45 p.m. before I was out of “recovery” and able to have visitors (my girlfriend Tanya and son Tom.) The surgery went as expected with the exception of a brief 5-10 second “seizure like activity noted when starting the implant on left side.” The good news is that this is something they are prepared for and so they immediately administered Keppra, which is an anti-seizure medication. The surgeon noted that this is the first time this has happened during the 300+ times he’s completed this procedure. The “better news” is that no further seizure activity was noted nor were there any deficits noted by the surgeon as a result of the seizure (whew!)

Apparently, I was not very comfortable after the surgery. I’m told I kept grimacing and saying neurotransmitter. I also kept pulling at my left shoulder. The nurse, apparently unfamiliar with Parkinson’s tremors asked me why my arm was shaking. I was administered pain medication 2 times along with my Parkinson's medication. The surgeon and his PA came in at different times to check on me. He affirmed that that the hardware was placed in the correct location and that I’d had a seizure during the procedure, but he did not believe this would be an issue going forward. Then the on-call doctor came in. After stating that my pain level was at a 7-8, she decided to give me additional pain medication, even though the nurse stated I could not have anymore. Nothing seemed to take the edge off of what I was feeling. I felt nauseous so the on-call doctor told the nurse to give me (unknown) medication. Then about 10 min later she came rushing into my room stating that I could NOT be given this medication because I had Parkinson's. Something different was ordered for the nausea. Shortly after I sat up, I threw-up. I laid down again and more nausea medication was supplied. (Rinse and repeat!) Tried again… sat-up and I threw-up again.

During this time the nurses were very loud and chatty. It was very disruptive. The lack of consideration under the circumstances, being in the ICU of a Hospital was disappointing to say the least. At one point, a therapy dog also arrived in the ICU, and we were asked by our nurse if we wanted to pet it. My girlfriend responded, "do you think Tim is in any shape to pet a dog?" She made sure they were aware of how all of this was impacting me. Later when the night shift nurse came on duty making small talk I asked how long he’d worked at St. Luke’s? His responded “about 7-8 years…about 3 years too long!” Again, not the response I was expecting or hoping for!

I do not remember much from that first day including any text or Facebook messages that I sent out that evening. I’m told that it was “kind of hard to tell whether I was lucid or not.” Although this could be a fair statement to make about me under normal circumstances! Given the 15+ medications administered during the surgery (and several more thereafter) I’m pretty sure I was NOT lucid for much that first day! I do not remember having any pain from my chest/neurotransmitter. I do remember a slight “head ache” in the front portion of my head and nausea every time I sat up and/or tried to eat. This was validated by repeatedly throwing up (about 5—6 times) Thursday evening as well as Friday morning.

I didn’t sleep much that night for a variety of reasons: every 60 mins my blood pressure cuff inflated, my headache, agitation (inability to sit still)/dyskinesia) and the overall environment in the Intensive Care Unit I mentioned earlier e.g. I repeatedly heard laughter from outside my room from the nurse’s station. I was exhausted and it felt like one of the longest nights of my life, flowing right into the next day, without pause and with very minimal sleep. As “morning” approached, I was feeling somewhat better. My headache was less and anesthesia medications were finally leaving my system, “literally,” especially when I sat up. Right on cue, I’d throw up, and feel better. I was slowly able start eating some breakfast. Later the catheter and IV lines were removed. If I wanted to be discharged, I needed to be able to walk, go to the bathroom and demonstrate that I was capable to fending for myself at a basic level. As strong as I was going into surgery, I was amazed at how weak I felt. The surgery had taken a lot out of me and it had impacted my balance and coordination (areas they repeatedly “tested” me on in advance of the surgery.) Later that afternoon, I did reach my goal. I was weak but stable. Stable enough to head home around 3 pm! When I got home, I went straight to bed to rest. Slept for a few hours, had supper and then returned to bed for the night.

Saturday morning 12/2/23 (two days after the surgery) I woke up and took my normal Parkinson's medication and dosage as usual. I was not doing well at all; I could not sit still. This progressively got worse over the next hour. We called the emergency number to have the on-call PA contacted. She called back within 20 minutes and we discussed if my seizure medication was causing the issue. She instructed us NOT to take the next does at 6:30 am. She also let us know she would contact my surgeon. I continued to struggle, so we called the emergency number again, but was unable to connect further with the on call PA. After waiting another hour, We decided to head into the ER. On our way to St. Luke’s, the PA returned our call. She did not seem too concerned, as she had stated this was not "life threatening." She let us know she would track me in the ER and communicated that my surgeon said the anti-seizure medication should not be causing my issues.

When we arrived at the ER I sat down into a wheel chair and everyone scrambled to get me back to a room immediately! There were 8 different people working on me in the room. My girlfriend provided them a brief history of the last two days and information on all the medication I had taken. The doctor stated Benadryl might help and the nurse gave me some via IV. I received two does over the next hour. I was sent back for a cat scan. Once this was completed the PA and my surgeon looked at the results and determined there were no anomalies with my brain causing this (e.g. from the surgery). The focus now shifted to my Parkinson’s medication. The ER doctor could not get ahold of my neurologist but was able to talk the neurologist on call. It was determined that I may be over medicated and that I should stop my Parkinson medications and monitor my symptoms. In my earlier post, I mentioned that one of the immediate bi-products of the surgery can be “feeling better,” also a sign of the surgery’s success. More specifically, there can be a “lesion affect” due to the swelling in your brain that can last anywhere from a couple of days to weeks even before the neuro stimulator is turned on. As with the surgery itself, the results vary for each individual e.g., does it lead to a reduction in medication, tremor, dyskinesia, improved motor systems? The answer is “yes,” but it’s different for everyone. I was on my way to finding out. Prior to the surgery, I was taking 4 capsules of Rytary (extended-release Carbidopa Levodopa) 3 times daily every 3.5 hours (with a 4th dose as needed). The day of the surgery and after, I hadn’t received any additional instructions so I continued with that regimen. What I started to experience as the various other medications wore off was agitation and an ability to sit still. More specifically I was experiencing medication induced (too much Rytary) Dyskinesia (characterized by involuntary muscle movements, from a slight tremor of the hands to an uncontrollable movement of the upper body or lower extremities.) This is a sign that the surgery was successful in that the impact of my medication was being amplified e.g. a lower dose of my medication was able to give me an amplified result. The neurologist also stated this was a good sign that the procedure had worked. I was then prescribed additional medication to help me relax. They gave me anxiety medication through my IV, but I still could not stop the movements, so second dose was administered. I then relaxed a bit and was discharged.

Monday, December 11, 2023 – 11 days post surgery
The bulk of the days that followed I’d characterize as feeling “stable but weak.” It’s been almost two weeks since the surgery and I am feeling more “like myself” every day. I’m feeling stronger and have more energy than most days previously. My goals currently are to be as active as I can to include a 30–60-minute walk! To date I’ve managed about 4. I have follow-up appointment with my surgeon on Wednesday! I’m looking forward to getting these staples out of my head because they are “itchy!” And after that, an appointment on December 27th to activate the neurostimulator! This is the beginning of me getting a clearer sense of the overall surgery benefits!

Wednesday, December 13, 2023 – Follow-up with my surgeon
Today my weight was stable, but my blood pressure was low. I felt fine throughout the morning, but very tired by the end of my appointment. My staples and “glue” over my neurotransmitter incision was removed. All incisions appear to be healing nicely with no sign of infection. They were cleaned and treated as well. Return to driving as appropriate and continue to with the lifting restrictions.

I shared with my surgeon regarding the patient care I had received mentioned above. He had noted that typically the dbs / neurology patients are treated on the 2nd floor of the ICU in the hospital and that due to the volume on my day of the surgery they found me a room on the 1st floor. He was apologetic for the treatment I’d received and stated that the care team is usually more familiar with the dbs procedure and care.

I also received a follow-up call from a Patient Care manager, who also was apologetic regarding the level of care we had received. What I found “interesting” from the conversation with him was that he acknowledged “being aware of these issues” and that these have been some things that they have been “working on.”

December 28, 2023 – Turning on and initial programing of the Neurostimulator

Surgery was about one month ago and we turned on my Boston Scientific Vercise DBS system. As an overview, in deep brain stimulation(DBS) electrodes were placed deep within the brain through small holes in my skull. The electrodes were connected by an extension wire to a battery-powered stimulator (like a pacemaker device) placed under the skin of the chest. Because the left side of the brain controls the right side of the body and vice versa, leads were placed on both sides of the brain. The goal today was to turn “on” the various programs of the dbs system, 4 rings/levels on each side (2 of which are segmented) and at different levels of voltage to map out and select which combination was going to produce the best result with the least amount of side effects. The experience was rather “interesting” to say the least as I experienced different sensations throughout my arms and legs (mild tingling---ever put your tongue on a 9 volt battery) face (involuntary twitching) and head (light headedness, foggy feeling etc.) Some settings significantly reduced my leg and hand tremors and gave me better motor control as well as better muscle tone. After 1:45 minutes we settled into a setting along with some basic instructions on how to turn the stimulator on and off and recharge the battery. I took a single dose of Rytary as instructed (which was previously 4 capsules prior to dbs surgery) to somewhat fill in the gaps of symptoms unresolved by the DBS settings at this time. I scheduled appointments for another 2 & 4 weeks as this process takes some time to get dialed in to the optimal settings. (As I would soon find out.) I left feeling excited about finally seeing some symptom resolution, as my tremor, though still present was reduced! 2.5 hours later however, I started experiencing some pretty extreme dyskinesia (involuntary, spastic movement) in my right, shoulder and neck. This is a common symptom of Parkinson’s that can be medication related or the result of programing the stimulator ( as in my case.) Kind of scary having my arms flail around and/or not really be able to control them but even wilder to have it completely stop when I turned the stimulation off on my DBS controller! Kind of a crazy cool thing all wrapped up together. Luckily, I was able to get in to see my doctor first thing the next morning! Very simply, she reduced the amount of stimulation from 1.5 volts to 1.0 and the dyskinesia lessoned significantly. She then released the control to me to bump the level up on my controller each day (but not more than .2 at a time.) She explained that this is not uncommon and actually a good thing in that my body is just adjusting to the stimulation. The dyskinesia is signifying that the surgery was successful and the result of over stimulation. Over the previous days I have slowly increased the stimulation back up to the 1.5 level. My tremor is pretty minimal and would say my poverty of motion and slowness of movement has improved! My typing and handwriting (fine motors skills) have improved as well, which is great! The “fogginess” with regards to my memory has lessened as well! The experience of dyskinesia, however, is new to me as it was not very pronounced prior to my surgery. What I am currently experiencing is a bit of a tug of war with the dyskinesia in the right arm, shoulder and neck. Definitely better than last week, but now what I feel are the impulses for those muscles to move and if I counter them by trying to stop or restrict the motion there is tension and a “tug of war” between what my body is doing and what I want or it to do. If I am able to relax when I feel the impulse, it dissipates. It’s not unbearable by any means, just an underlying tension.

I am being reassured that “it continues to be a good sign that there is some level of dyskinesia. There will be certain levels of stimulation that will always induce dyskinesia and it takes a little bit of time to figure out exactly what the upper limits of that may be.” Baby steps. Things are progressing in the right direction!

Let’s fight Parkinson’s together! If you haven’t had a chance to donate to Moving Day 2004, please take a moment to click on the link below to make a donation to support the Parkinson’s foundation: https://secure3.convio.net/prkorg/site/Donation2?idb=1719184305&df_id=7083&FR_ID=5146&mfc_pref=T&PROXY_ID=1785856&PROXY_TYPE=20&7083.donation=form1