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Jack is coping with ALS - Amyotrophic Lateral Sclerosis, also known as Lou Gehrig's Disease. The disease starts and progresses in different ways for individuals, but results from degeneration of the motor nerve cells, or neurons, in the brain and spinal cord. These are the nerve cells that control the muscles. As the disease progresses, and the nerves become more affected, muscular weakness may appear in the legs, arms, or in the muscles used for speech, swallowing, and breathing. From the time of diagnosis, typical life expectancy is three to five years, though this varies from patient to patient.
Jack's symptoms first appeared about two and a half years ago, in early 2015. He had the sense that his speech had changed in its cadence and speed, and noticed this while going about his work day, which entailed a lot of telephone communication. This began to be more apparent to others by the summer of 2015, and some people were concerned that he had suffered a stroke or some other neurological event. As of September 1, 2015, at age 62, Jack found himself unexpectedly retired from his employment of almost 39 years at PacifiCorp, when he was informed that his job was being eliminated. We will probably never know if this was legitimate corporate downsizing - or not. But he was able to retire with full benefits, at least one positive note.
After the initial shock of this really unpleasant experience, we started to pursue the cause of his speech issues in earnest. Jack saw two different neurologists at Providence St. Vincent, who diagnosed "Parkinsonism", Frontotemporal dementia, and Supranuclear Palsy, among other things. At the suggestion of his brother- and sister-in-law, John Mangan and Beth Barbre, residents of Las Vegas, he visited the Lou Ruvo Center for Brain Health at the Cleveland Clinic there for a consultation, which they helped to arrange. That diagnosis was Primary Progressive Aphasia, which is a language disorder often associated with Frontotemporal dementia, though the conclusion was that he did not have the cognitive issues that often accompany that disease.
By this time, spring of 2016, Jack had lost most of the ability to speak, and relied on writing or typing to communicate. Although he could still drive, and perform most activities and chores, his walking slowed, and he began to have problems with concentration and reading.
He had brain scans, swallowing tests, speech pathology consultations. In September, 2016, the speech pathologist he was seeing for swallowing and gagging issues contacted his neurologist to express her concern that Jack showed symptoms she saw frequently in her ALS patients. She recommended a consultation with Dr. Kim Goslin, Director of the Providence ALS Clinic, at the Portland/East location.
In November, 2016, Dr. Goslin diagnosed Motor Neuron Disease, which refers to any condition that causes progressive weakening of the muscles as a result of the loss of motor nerve cells. ALS is a type of motor neuron disease. The shock of her assessment was somewhat buffered by her assurance that her staff and the Multidisciplinary ALS Clinic she directs would be there to supply us with tools to maintain a good quality of life, learn how to manage symptoms, get straightforward information about the disease, and provide ongoing counseling and support. Dr. Goslin and her staff have been wonderful and comforting to work with. They are diligent about managing Jack's care and appointments, and check in with us frequently. They really care - and have commented more than once about Jack's amazing ability to keep a smile and a "thumbs-up" going even while being examined and questioned for hours in frequent clinic sessions with many specialists. Those who know Jack are familiar with his upbeat personality, but it's still truly amazing (and a gift) that he can still smile.
Jack stopped driving (reluctantly) in April, 2017. Although it's amazing that, for the most part, he doesn't seem to have a lot of anger and frustration issues with his condition, driving (or NOT driving) is the one thing that seems to spark the flame. He is NOT crazy about his wife driving him around, and expresses his displeasure with lots of hand gestures and rude comments on his writing board...!
It is difficult for him to walk and to go up and down stairs, get into bed, and in and out of the shower. He has had some falls. He uses a cane, and has just acquired a new walker, which is very helpful. He has been fitted for a cervical neck brace/collar which will help him with balance by keeping his chin and head up, and also for a lightweight shoe insert which will help with his weaker foot. We try to adapt day by day, and will be making other changes, some minor, some major, around the house to make life safer and more comfortable. In order to communicate, and to feel involved in group gatherings or conversations, he is most comfortable using a "Boogie Board", a great gadget with a back-lit writing surface that can be erased and re-used. He also has an iPad with an installed communication program in which one can type anything they wish, or choose from a vast dictionary of common words and phrases. It's a little harder to use, as there are some concentration and focusing issues as well with this condition. But his mind, memory, and general cognition are essentially intact.
He has lost a lot of weight, which is not unusual with this condition. Care must be taken with some foods and beverages due to progressive swallowing problems. His particular form of ALS involves Bulbar Palsy, which is the abnormality of the muscles that are important in speech and swallowing (and these were the first symptoms, in his case, of the disease). A supplementary feeding tube (called a "PEG" tube) is scheduled to be installed in early August as an aid to help with administering medications and supplementary nutrition. This is somewhat similar to a 'port' that cancer patients receive. He is still able to eat normally, and will continue to do so for quite awhile even after the tube is installed. The tube will help to maintain a healthy body mass, provide needed energy, and assist with hydration.
He takes several drugs that address and delay some symptoms, but do not eliminate them. ALS can be treated and managed - but it is not curable.
This is a lot of clinical and hardcore information to take in. As we have negotiated many consultations and appointments it has been a lot for Jack and our family to absorb, as well. But Jack has been amazingly open, calm, and receptive, in a way, throughout the process. Only occasionally does he exhibit anger or frustration (see "driving"reference above-!), which is so much in keeping with his upbeat, sunny, disposition. This may not always be the case as the journey continues, but it is a blessing in a nightmarish situation.
The Oregon/SW Washington chapter of the ALS Association, which consults with us at Dr. Goslin's clinic sessions, has been amazing in its care and interest in Jack's challenges with this illness. The Association offers yearly $500 grants to ALS patients for any support or qualifying equipment they may need, and we were able to defray a large portion of the cost of the iPad Pro and communication software recommended by the speech pathologist with one of these grants. They have also provided, at no charge and on indefinite loan, a new "transport" wheelchair. There are many patients who are alone, without family or resources to cope with this devastating illness, and this wonderful association reaches out to them to help with many other needs: transportation to appointments, caregiver assistance, equipment to make life easier, and assistance with Social Security or Disability benefits applications, to mention a few.
When I mentioned that I'd be interested in participating in the annual fundraiser that supports this work, the Walk to Defeat ALS, the Association development director, Aubrey, arranged a home visit to help organize a team and explain the details of the event. We're working on getting organized for this year's Walk, which takes place on Sunday, September 24, 2017. Mark your calendars to join or support Jack's Pack on the downtown waterfront!
We are incredibly fortunate to have a large and loving network of family, friends, and neighbors to support Jack and our children. Please know how much we appreciate your care and support, and check in with Caring Bridge for updates on the challenges Jack handles with courage - and while still smiling.
Martha and Jack Younie Eloise, Sam, and Glenn Younie