GRANTSBURG – When asked why she started a support group for Parkinson’s Disease, Abby Anderson, Doctor of Physical Therapy at Burnett Medical Center, stated she always enjoyed working with those who had neurological diagnoses. In physical therapy, this is a common reason to seek help. Parkinson’s Disease is marked by a loss of dopamine in the brain which in turn impacts the body’s ability to program and plan movement and give the brain awareness of body position and movement. The support group will give those diagnosed with PD and their spouses or caregivers a chance to meet others in the same situation, learn about various topics related to PD, support each other on their journey and share helpful resources. Anderson is excited to see the group develop, grow and change over time.
One attendee, Allan Johnson, agreed to talk with the leader about his journey with Parkinson’s. He stated that he had one uncle who had been diagnosed with PD, but that in general, it is not considered a hereditary disease, with 2% of the general population being affected, and this increases to only 4% if a family member is diagnosed. He also said he took a 23&Me test that revealed no inherent Parkinsonian traits in his genome, and that while he lived in the country on a farm, his farm didn’t use harmful chemicals, but perhaps he had exposures that may have led to the development of PD. In general, the root cause of PD is unknown.
Twelve years ago in 2011, Johnson was diagnosed with Parkinson’s while in his 40s after he started to have a tremor on his right side, which was controlled successfully with a medicine called Sinemet until 2019. At that time, he was a candidate for Deep Brain Stimulation to still the tremor, which was successful. When the tremor began affecting his left arm, he again underwent DBS to install another lead to control the tremor on the other side of his body. He does enjoy showing off how remarkably his DBS device controls the tremors, as the regulation equipment has a digital controller that can shut off the terminal to allow the tremors to come through. Without the stimulation from the device, the tremor is quite significant. Due to this, he frequently encourages others to consider the technology for themselves if they struggle in a similar way.
He had previously been involved in a support group formed by Beverly Sanberg in 2013. Her husband had PD, but the group dissolved after her spouse passed away about three years later. As someone who was diagnosed at a younger age, Johnson stated that he often felt out of place in support groups in the past with those in their 80s or in wheelchairs. He does his best to educate others and spread hope to those who have received a diagnosis like his. Johnson says he knows many younger people in the local community with a Parkinson’s diagnosis that have expressed interest in a support group that couldn’t come to the meeting this day. He also said he shares about lifestyle changes and preventative action as key, since he has found that helpful in his own process. One of the silver linings for him was that when the Parkinson’s forced him to take disability and leave his computer engineering career for early retirement, he now has time to expend energy on other things he enjoys. He has three grown children and four grandchildren, with another due soon. He lives on a century farm, called the Thor Farm, that had its 150th anniversary in 2019. He stays active by doing a lot of things outdoors there. Surprisingly, he also mentioned that he snowshoes better than he walks, despite having had three back surgeries according to his wife.
Some interesting experiences were also shared about the disease by attendees, such as changes in smell, which apparently is something that can happen well in advance of diagnosis. Several of those present mentioned that they had initially written off changes as due to some other reason. Odd changes included things not smelling as they should, such as skunk smelling like coffee, bad smells lingering for days or a lack of smell. For exercise, one attendee also shared that they walk the equivalent of a mile, which they paced out, going back and forth between two bedrooms daily. His wife quipped that they will soon have to replace the carpet. He stated the daily exercise has really helped to combat his fatigue, which is another common symptom of PD. Another trademark sign of PD is a soft and quiet voice and small, shuffling movement. Due to this, falls grow more common as the disease progresses. Physical, occupational and speech therapy are common treatments to reduce the effects of these symptoms.
Anderson is a Lee Silverman Voice Treatment BIG certified clinician. LSVT BIG, which was derived from LSVT LOUD, is a specific physical therapy program for individuals with Parkinson’s Disease. It is a customized, high-intensity program, focused on daily exercises, functional tasks and gait training, all done in a BIG way in order to reorient the brain to normal-sized movement patterns. Johnson was a patient of Anderson’s and they both were amazed at the difference it made in his mobility and function. The program is intense and takes commitment, from both the therapist and the patient, with one-hour sessions, four days per week for one month and daily homework. A physical therapy referral for this program from a neurologist or a primary care provider is necessary to participate, and then the therapist determines if the program is the right fit for the patient. Other, less specific forms of therapy are available to those who may have different needs.
The group meets at Burnett Medical Center, located in Grantsburg, on the third Wednesday of each month, from 11:30 a.m.-1:30 p.m. in the basement classroom.
