Bethesda offers program for people with the movement disorder
In the back row, left to right, are Kris Johnson and Sara Damhof. In the front row are Teri Panitzke and Melissa Wentzel. Photo by Bev Ahlquist
Bethesda in Willmar has a unique program for people with Parkinson’s disease. The program offers understanding and support, for individuals with Parkinson’s.
Bethesda is in the Struthers Parkinson’s care network, based out of Golden Valley. The program started locally with an identified need in this area of people wanting to have some services available specific to those diagnosed with Parkinson’s. “Struthers Parkinson’s Center was getting a lot of referrals from people in this area, calling them in the city, and there was nowhere to go for specific programs, so many of us were trained in areas to provide some of those services,” said Kris Johnson, admission coordinator at Bethesda.
Three employees from Bethesda were sent to training: Kris Johnson (admission coordinator), Jill Baker (Medicare nurse), and Sara Damhof (assistant director of nursing). The four-day training took place at Parkinson’s Struthers.
“When we were done with training, our goal for the year was to train all our staff in what’s called the Parkinson’s TULIPS program,” Johnson said. They started by doing an initial training called “Core Training” so all of the staff employed at Bethesda were educated in the TULIPS program. TUPLIPS is an acronym: T stands for Time; U is for Understanding; L is for quality of Life; I is for Increased awareness; P is for Pills on time; and S is for Support. It gives the staff some extra knowledge in Parkinson’s and helps assist them in providing better care at the nursing home.
Any resident with Parkinson’s at Bethesda will have the TULIPS signature on their chart, in their room, and sometimes on their wheelchair. “That’s so our staff can identify the residents who are diagnosed with Parkinson’s,” Johnson.
Damhof talked about the Core Training, which is for all employees, plus the individualized classes for the hands-on caregivers. Damhof said they have classes for their nursing care staff, who work directly with the residents. They’ve done four sessions now focusing on different things, including mealtime considerations, sleep changes and pain, assisting with daily care and nursing considerations. One of the nursing considerations is pills on time, so anyone who is on a Parkinson’s medication will have a tulip stamped next to the medication that they need to have on time. “It helps keep them on schedule to help them with their rigidity – the stamp next to the medication name in the chart is so we make sure they’re getting it on time.”
They refer to therapy if they need to. “We just did a MoveSAFE training which deals with therapy and nursing. It’s like symptom management.” By the time they get to the nursing home they need a lot more extensive assistance, Damhof said, so it’s more focusing on symptom management. “Therapy focuses a lot more on the outpatient, really keeping them mobile.”
Teri Panitzke, occupational therapist, and Dennis Eickhoff, physical therapist, took specialized training called LSVT BIG. This therapy is geared toward Parkinson’s patients at any stage. The program consists of 50 to 60-minute treatment sessions, four times per week for four weeks. Treatment is combined with a home exercise program designed to target “BIG” movements.
Bethesda’s speech therapist, Jill Grefe, is certified in LSVT (Lease Silverman Voice Treatment) LOUD which again is geared specifically toward Parkinson’s. It works on amplitude of voice, projection of speech, and quality of speech. “Similar to the BIG program, voice therapy is 50 to 60 minute sessions, four times a week for four weeks. Patients receive exercise to take home to continue their program.” She further explained the LSVT BIG focuses on amplitude-based movement geared for Parkinson’s, working on that rigidity, freezing, getting out in the world, working on balance, strength and a little bit of endurance. “Any of these programs can be started at any stage of Parkinson’s, and we’re also training some of the staff in MoveSAFE.” She said their focus there is how to gear their treatment for someone with Parkinson’s. “A lot of times they need more time; they need simple and short cues for that processing of transfers and how to transfer somebody with Parkinson’s safely, so we’ve done some training with that as well.”
The LSVT is done with outpatients in the community, but they have done that with some of Bethesda’s in-patients as well.
Melissa Wentzel, Club Bethesda director, said after they are done with therapy, they can transition over to the wellness center to continue their exercise program. Wentzel also was trained at the Struthers Center and is certified to teach PWR, which stands for Parkinson’s Wellness Recovery. The Club also has a therapeutic pool, weight equipment, treadmills, bikes, ellipticals and fitness classes.
Damhof said they’ve been doing this pilot program for almost a year now, and that they started their initial training last July.
Kris Johnson said when this program is over they’re going to continue with everything. “We’re definitely going to continue to train our staff in orientation, train them in specifics, the hands-on caregivers in the different modules,” stated Johnson, “We’re going to provide therapy classes and provide special education classes for Parkinson’s in our wellness center. It’s something we’re going to always continue even after this pilot program is over.” She added, “We think it was a great opportunity to partner with the Struthers Center and for all of us to have some specialized training in this.”
Right now, Bethesda has 22 residents with Parkinson’s. Panitzke said one thing to keep in mind is that Parkinson’s isn’t a cookie-cutter diagnosis. Not everyone with Parkinson’s has tremors or poor balance, so it’s important to treat everyone with Parkinson’s differently. “That’s why you need the specialized training. You can’t treat every individual the same, you have to look at their symptoms, at their daily needs, their schedules, and oftentimes meds are going to be different.” She went on to say some might do better during the day with tremors and movement; some might do better at 3 in the afternoon. “It is very individualized, and everyone’s symptoms are different. The way everybody handles it is different.”
Johnson said she believes more awareness of what people with Parkinson’s need is important. You do have to treat everybody with Parkinson’s individually, she said.
Damhof said she knows from the nursing home, even going through this TULIPS program and the entire staff becoming aware of the needs of those with Parkinson’s, giving those residents time to actually process activities rather than trying to do things for them because they’re not able to do this now is important in maintaining their independence. “They can’t just stand right up; sometimes they need cues to stand or cues to walk and time to do this.”
Johnson said somebody might have what are called “on” and “off” times, depending on when they take their medications. In the morning they might be much more alert and be able to make that walk from their room to the dining room, but at three in the afternoon they’re not going to be able to do it. “Staff can say ‘this is Parkinson’s’ instead of saying, ‘oh now Mary you did this in the morning, let’s try it again.’ It just doesn’t work that way for them – it really has given the staff just that little extra knowledge to understand it better.”
Damhof said they have a support group meeting the second Wednesday of every month at 10 a.m. It’s a Parkinson’s support group so anybody from the community, anybody from the facility, residents, family, caregivers, anybody’s welcome to attend. It’s for the community, Damhof said. “The TULIPS program is specifically for the staff and employees to assist the residents at the nursing home, but the outpatient programs are for anyone in the community, as is the support group.”
Bethesda is also working with Ann Garrity from the Parkinson’s Foundation. Garrity is working with the facilities in the pilot program and does have funding for any area they need it in. It could be helping them with their marketing, paying for some of that, and with community events.
Wentzel said she knows the Parkinson’s patients like the fact they don’t have to drive all the way to the cities anymore. “Our therapeutic pool has been a huge asset to the community, especially for individuals with Parkinson’s. They can work on increasing their stride length, balance, and strength, all at the same time.”
And with their therapy clients, according to Panitzke, they’ve had to go through a lot of people who say “when I got diagnosed with Parkinson’s it was I’d die of Parkinson’s and that’s it,” but with therapy they can see that they have power over their Parkinson’s, and they have the tools now to take control over their life, the stuttering steps, the freezing. “With therapy we can help and make you more independent; we can keep you home longer.”
Those are our goals Panitzke said. “We want to keep them in their home, independent and in their community for as long as they can. People have been really appreciative of that and to have it so close to home is wonderful.”
She went on to say they’ve had people drive over an hour four times a week to participate in their program. “That’s a big deal, and it does take a big time commitment, a lot of dedication and a lot of motivation on that person’s behalf to complete the program.” For those who have gone through the entire program from start to finish there have been some huge gains, and it’s really fun to watch how they were when they came in and how they are when they come out, and to see their faces light up and to know that they have control over their bodies again; they can regain their independence.
After the four-week program, they transition them to the wellness center, and they will also get their own home program so they’ll do it for the rest of their life. “The exercises you get in therapy are meant to be done lifelong. If you come to the program for four weeks and then don’t do anymore, you’re going to go backwards. We gave you the tools, you now have this independence, and it’s your job now to go to the wellness center and keep it up; go to the Parkinson’s class, do your home program,” said Panitzke. Some people come back after six months to a year for a tweak and kind of to go over the program again, Panitzke said, to see what has changed. “We can fix their program, kind of bump it up a little, then in a year tell them to come back. It’s not just that we see them for four weeks and let them go.”
They talk to family members as well. “It’s just such a stressful time when they have to come to the nursing home, whether it’s for a short-term or long-term stay, and for them to know that their loved one does have Parkinson’s and we do have some extra training and we’re committed to that, really is a reassurance for them.”