BRUNSWICK — For Lisbon resident Lisa Lauzier, receiving treatment for symptoms of ALS, also known as Lou Gehrig’s disease, used to mean traveling as far as Boston.
It is a stress many patients of the disease know well, and one that Mid Coast Hospital is hoping to alleviate with a new, first-in-the-state ALS Association-affiliated clinic.
The clinic is held the second Friday of every month at 81 Medical Center Drive. It was launched in mid-November by Mid Coast Medical Group Neurology and Mid Coast Rehabilitation in partnership with the ALS Association of Northern New England.
Neurologist Dr. Jay Taylor said efforts to create an ALS clinic in Maine have been underway for years, and a $50,000 donation from a private donor made the difference.
Taylor said the donor’s wife had died of ALS, and the funding was the final piece necessary to get the clinic started.
“There are parts of the ALS clinic that are not reimbursed by insurance companies or Medicare, so you have to be able to provide some of these services (and) pay for them with alternate means,” Taylor said. “Either through donations, or grants, or in this case, a very generous donation.”
Mauret Brinser, executive director of the ALS Association of Northern New England, said she, Taylor, and Dr. Jeffrey Cohen, head of neurology at Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire, began discussing launching the Brunswick clinic in early 2016. Cohen is also the medical director of the ALS clinic at Dartmouth-Hitchcock.
Brinser said her organization, which assists ALS patients in New Hampshire, Vermont and Maine, received a lot of feedback in 2015 regarding the lack of a clinic in Maine.
“Money that was raised (in Maine) was going toward care services, but if you live in Bangor and (you wanted) to go to a multi-disciplinary clinic, you’d have to go to Burlington or Boston, which is exhausting,” she said. “It was very clear from the very start that we really needed to do something.”
Brinser added her organization issued a survey in December about what else it could do to help patients in Maine, now that the clinic is open.
The idea of the clinic is to have each of an ALS patient’s medical providers together in one room, on one day, rather than the patient having to visit several offices and have the different facets of care be uncoordinated.
Along with Taylor, specialists in physical therapy, occupational therapy and speech evaluation are present to evaluate and provide treatment to patients referred to the clinic. Patients can also receive social work help there.
ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Taylor said a key part of treating the symptoms of the disease, which has no cure, is to anticipate what a patient may need in the next phase of the disease ahead of time.
Because it is such a fast-moving disorder, he said waiting until a person needs a certain piece of equipment, such as a motorized wheelchair, can mean help comes too late.
Before and after each session at the clinic, the specialists meet to discuss each patient’s case. The specialists also discuss psychosocial needs of patients, such as home modifications.
For Lauzier and her partner Jeff Buiniskas, having a clinic in Brunswick has made treatment easier.
“As far as life changes, obviously we live in Lisbon, so it’s only 30 minutes from our house instead of traveling to Boston or Dartmouth, which is 2 1/2 or three hours,” Buiniskas said. “Financially wise, it’s a lot less.”
Lauzier was first diagnosed with ALS in November 2014, after experiencing mobility issues in her right hand for over a year, which she was originally told was carpal tunnel syndrome.
She said Taylor was the fourth neurologist she consulted after the diagnosis.
Buiniskas said he wants other people who are affected by ALS to know about the organizations available to help, such as the ALS Family Charitable Foundation and Alpha One Now, which, he said, have been hugely helpful to his family.
He said he took a week off from work just to help Lauzier navigate the electronic paperwork necessary to receive care. His stepmother, whose father had ALS, acts as a caregiver three days a week.
“That’s the biggest thing about ALS: I think people don’t realize what kind of time it takes to try to stay working and have somebody with her, (but) there are a lot of programs out there,” Buiniskas said. “It’s a lot. It’s so much, I could sit here and talk all day about ALS because there’s so much that goes into it.”
Neurologist Dr. Jay Taylor, left, with ALS patient Lisa Lauzier and her partner Jeff Buiniskas at Mid Coast Medical Group’s ALS Clinic in Brunswick on Jan. 12. It is the first ALS Association-affiliated clinic in the state of Maine.