Welcome to Chris's Blog

This is the story of Chris Perkins, for his friends and family. We hope to keep you up to date on Chris's situation and activities.

Chris's Background

Chris was a normal superkid until Sept. 21, 1981, when he was 14. After a routine ophthalmology exam, he had been found to have a brain tumor. He underwent major brain surgery at Children's Hospital in Washington; Dr. Katherine Hammock was the surgeon. The operation lasted many hours because the pathology kept indicating that the mass was not tumorous. It turned out that it was a "tuber," a symptom of tuberous sclerosis, a disease he was born with but that never had been evident. He may have never had a problem except that the tuber in his brain attached itself to a blood source and was growing. At the core of the tuber, as I understand it, they later found a giant-cell astrocytoma, more like a real tumor, which seems to be related to tuberous sclerosis. So he also had to be treated with radiation.

The operation apparently triggered a stroke. He was left paralyzed on his right side and with major problems with his speech. He was in Children's for about two months. After that he went to a children's rehab hospital associated with the University of Virginia hospital in Charlottesville, where he lived for several months. After that he attended a special school in Virginia, the Accotink Academy, for a year, commuting from home. He then re-entered Montgomery County public schools and attended Walter Johnson High School for about three years, in its special education program, and received a diploma in 1986. He then spent time in several other programs - one connected with Johns Hopkins in Baltimore, a brain trauma institute in Potomac, the Treatment and Learning Center in Rockville, etc. Finally, in 1992, he was accepted by CHI Inc. - formerly called Center for the Handicapped Industries - in Silver Spring, a shelter workshop for the disabled, which became his day program for 25 years.

Over the years Chris has undergone quite a few other operations. He had an orthopedic operation early on - 1983? - to reposition his right foot, to allow him to walk without a cane. He had a number of operations to repair his shunts - he had three shunts carrying liquid from his brain to his mid-section, and if they got clogged, he could have seizures. He had other surgeries to remove the shunts, and a gamma knife procedure to block a recurrence of the tumor. Most of these procedures led to more setbacks in speech,walking, eating and general intellectual ability. And over the years he became increasingly hard of hearing - probably because of the radiation treatment - and needs to wear an amplifier with earphones.

Chris lived with me in Potomac until 2000. He was still fairly independent - could get up by himself, get dressed, even get his breakfast and meet the van to go to CHI. He had a caregiver from the Kennedy Institute who visited a couple of times a week and did things with him. Chris often talked hopefully about getting his own apartment, and the caregiver said he would like to become Chris's first roommate and help with the transition for a year or so. We found an apartment on New Hampshire, and the two moved in. It was wonderful for Chris. He was fairly independent, but had a helpful roommate to help with cooking, chores and emergencies. After a year, we were lucky to find Alex Crespo for his next roommate. She lived with him and helped him with anything he needed for several years.

Around 2008, he rather suddenly began having more trouble talking and chewing/swallowing. Doctors thought it might have resulted from a small stroke, or possibly a long-term reaction to the radiation or drugs that he takes. After a while he essentially stopped talking - it became so hard for him to form words that no one could understand him.

In late 2009, an MRI showed that Chris's tumor had reappeared. I couldn't imagine putting him through another major brain surgery. Fortunately, his neurosurgeon - Dr. Jacobson, who as a resident took part in Chris's original operation - recommended the gammaknife facility at the Washington Hospital Center. So in the spring of 2010 Chris underwent the gammaknife procedure - intense doses of radiation aimed at the tumor. It wasn't much more complicated than an MRI.

Chris was able to walk out without any apparent complications

After that procedure, however, Chris began having more setbacks. His chewing and swallowing became even more difficult, sometimes leading to choking; he was much more wobbly when walking, fell much more often; two sores developed on his head, often oozing pus; and he became partially incontinent - he wet the bed virtually every night, and occasionally in the daytime.

So in the summer of 2010 we began making the rounds of several doctors - neurologists, dermatologists, GI doctors for his chewing/swallowing, a PT for his walking, etc. Soon Chris spent several days in Holy Cross hospital, where he was examined by a team of neurologists, dermatologists (for the sores), OTs/eating disorder specialists and others. They didn't turn up with much that they could do. They recommended seeing his regular doctor and neurologist and possibly other dermatologists for the sores. But no one came up with any answers.

As of late October 2010, the sores were frequently oozing, he was still falling and still unable to chew. Dr. Jacobson agreed that we should check Chris in to a hospital for a more thorough checkup. On Nov. 4 he entered the Washington Hospital Center, under Dr. Jacobson's supervision, and a team of doctors and specialists went to work. The main finding was that Chris had a major infection in his brain and in other parts of his body, basically a form of meningitis. They injected massive antibiotics into him for days, they removed the old shunts that had been in place for 25 years and were apparently not doing anything helpful (AND were highly infected), they performed some plastic surgery on the sores, covering them with a skin patch from his thigh, and they tested his chewing and swallowing. For days he basically shut down; he was even fed by a tube through his nose. But he slowly began recovering, and right after Thanksgiving he was transferred to the National Rehabilitation Hospital across the street.

There they focused on PT (walking, mainly), OT (daily chores) and speech therapy, which included eating. Soon the PTs were helping Chris walk down the hall, with a cane. But he still couldn't speak, and was unable to eat solid food.

In January 2011 Chris was transferred to Manor Care in Bethesda, a nursing home/rehab center. There he received only a couple of sessions of therapy a day. He began wheeling around the place in his chair, making friends even though he couldn't speak. They could feed him only highly pureed food, and all liquids had to be thickened to avoid choking.

He was discharged from Manor Care around March 1, 2011 and went back to his apartment. It was clear that Alex could no longer take care of him. So we found Oswaldo Aguilar (thanks to our friend and guardian angel, Carmen Suarez). Oswaldo became Chris's full-time caregiver - preparing his meals, getting him to the CHI van every morning, walking him several times a day and generally helping him improve. He also had Kennedy Institute aides helping - visiting Chris a couple of times a week and giving Oswaldo a break.

Oswaldo was a wonderful caregiver, but after a few years we came to realize that Chris needed more than a single person to count on - he needed an organization with deep expertise and a strong infrastructure. We were fortunate to connect with the Jewish Foundation for Group Homes, and in October 2014, Chris moved from his apartment into a group home in Silver Spring.

2015 Setbacks

In January 2015 Chris began having more trouble walking and eating even pureed food. He was checked in to Holy Cross hospital, and after a few days - when he became almost unable to function at all - they found that Chris had been suffering almost constant silent seizures in the front of his head. They put him on a strong anti-seizure medication, which essentially put him into a coma. As he recovered he transferred back to the Manor Care facility in Bethesda, where he stayed from April through October - receiving PT, OT and speech therapy for eating and slowly improving.

But the damage had been done. He never recovered his ability to eat anything by mouth and must be fed by a stomach tube. He lost the use of both legs. His left arm and hand were usable, but had limited range and fine motor skills. He became totally incontinent. And his intellectual ability took another hit.

In late October Chris returned to his group home, which was able to adapt to his new needs. He was able to enter a different day program that worked with the more disabled, CHI Twinbrook, where he was taken by Metro Access in a wheelchair van.

2016 Setbacks

Over the next few months his setbacks continued. Chris slowly began losing the use of his one good arm and hand, on the left side. And he became more and more lethargic, sleeping most of the time and rarely responding. So in March he was taken back to Holy Cross hospital. An MRI showed a new growth deep in the right side of his brain (which could account for the loss of control of his left arm). He also had a low sodium level, which can affect the brain and cause serious drowsiness. Over several days they were able to increase the sodium levels. Chris was able to go back to the group home and his day program. But he had no use of his left arm - or anything below the neck - and he still had the undefined growth in his brain to monitor. A new MRI in late April revealed no additional growth, so it may not be a tumor - still unknown. It seems possible that he suffered a small stroke, leading to the loss of the arm, or the growth in the brain may have caused it.

In 2017 it became clear that his day program did not have any services that were appropriate for him. In addition, the transportation back and forth by Metro Access was taking its toll - sores on his feet and legs from scrapes in the van, and occasionally an upset stomach from the stop-and-go. So we applied for permission to have him remain in the group home in the daytime. CHI had been wonderful for him for 25 years, but now he gets the individual attention he needs at the JFGH group home. They take him to his doctor appointments and to occasional social events, usually with other JFGH residents. Otherwise his main activity is watching his favorite movies, or anything else on TV or DVD. He doesn't really respond, so it's essentially impossible to tell if he recognizes anyone, or understands what they say.

2022

In April of 2022 Chris was suddenly breathing hard and fast and sweating much more than usual. He was taken to the ER at Holy Cross, and they diagnosed a partial heart blockage. They would not do anything invasive, of course, but gave him some new meds for the heart condition. He went home three days later and seemed normal. A hospital doctor suggested that we look into hospice or palliative care. From what we learned, his current treatment is very similar to palliative care - no invasive procedures or artificial resuscitation. But he does go to the ER when needed, mainly to replace his stomach tube if it comes out. 

In July, a housemate who has a day program tested positive for Covid, and so did Chris. He tested positive again a week later, and another time. And then around Aug. 25 he and the others tested negative. So we had a long-delayed birthday party for him - just Evelyn and me - in his room on Aug. 27. He was extremely tired and sleepy. That night he had blood in his stools and a very rapid heart beat, so he was taken to Holy Cross - and he again tested positive (apparently unrelated to the symptoms). It turned out he had been bleeding internally, possibly from his stomach (after bad constipation) or from an ulcer. They gave him 3 units of blood and monitored him for two days. They thought they might recommend an endoscopy, but saw no more evidence of blood - so I didn't have to face the decision of whether to put him through an invasive procedure. He went home on Aug. 29, and seemed normal.

Throughout it all, he has been lucky to have had excellent care from his home and day program, and he was always upbeat and relatively happy.

Chris's Routine

He is awakened early and fed his 'breakfast' through his stomach tube, then bathed, shaved and changed. The staff also attaches an amplifier with earphones. He is often in bed much of the morning, then watches his movies in the afternoon. He alternates between being in bed - and being turned regularly - with sitting in his wheelchair, to avoid bedsores. The staff also take him to his doctor appointments.

He usually watches a movie or TV in the evening and has his 'dinner.' He goes to bed early and generally sleeps soundly through the night.

In normal times, we visit him once or twice a week, usually on Saturday or Sunday. In addition his old roommate Alex Crespo and her son Elifel often visit on the weekends, as does our friend and Chris's godmother, Patricia Bryant. 

 
MUSTS

His wheelchair has a motor to tilt it forward and back, and it must be recharged regularly. By 2021 it was not working well and we started the process of getting a new one - but it was delayed by covid. The design of a new one seemed to be back on track by spring 2022. 

 
His amplifier batteries need to be checked regularly if he is wearing it, as a hearing aid.. It should be checked every day to make sure that the batteries are working, that it's turned on, and that the volume in the two ear pieces is balanced.

He can't trim his fingernails, so they need to be maintained. And his primary caregiver gives him a haircut every few weeks.

Chris's Group Home

It had become more and more obvious, over the years, that as good as Chris's caregiver situation was, he needed to be in a permanent setting, with an organization that has the team, expertise and infrastructure to take care of him for the long run. We were very fortunate to connect with the Jewish Foundation for Group Homes. Chris moved into one in October 2014.

The address:

1028 Cresthaven
Silver Spring, MD 20903
301-445-1259

The home has three other residents and always has at least two staffers in waking hours. In much of the daytime, Chris is the only resident there and has his own caregiver. Another staffer stays overnight, checking on the residents regularly. The staff are all highly professional, caring, expert at their jobs.

In normal times the staff take the residents on outings, sometimes with residents of other nearby group homes. And as we saw on the very evening that Chris moved in, they also take the residents to JFGH's big fundraising Gala every fall.

We expected a difficult transition, but Chris seemed at home from the very first day - in large part, because of the professionalism and caring nature of the staff. When he had his setback with seizures in January 2015, he was away from the group home for about nine months. His return in late October was relatively easy and comfortable. The group home adapted well. And he seemed at home.

Chris's Finances

Chris and I share a checking account at SunTrust, now Truist, in Washington.  His Social Security check is deposited directly into it.

In a typical month a payment to JFGH for the share of the rent not covered by Medicaid is made automatically, and we write a check to to ALCO (which provides Chris's meds to the group home). There are often other bills for doctors and treatments not covered by Medicaid. We provide many of his personal products for the group home (bandages for his stomach tube, soap, shampoo, lotions, wipes, etc.), often by ordering them on Amazon, and we give the group home cash for his account, which they use for their outings or other expenses. His Social Security covers much of this, except when there are sizable medical or other unusual expenses (sometimes for special dental work or wheelchair repair).

Chris's Support Team

Here are the key members of Chris's support team, other than the group home staff:

Family 
Bill Perkins, Dad
301-346-2148
billjperkins@gmail.com

Barbara Torrico, Mother (in Texas)
214-460-2555
Batorrico@aol.com

Evelyn Sandground, Stepmom
703-509-6546
esandground@gmail.com

Patricia Bryant, Godmother and Good Friend
301-654-8740
cell: 301-461-0359
bryantpatri@gmail.com

Judy Womack, Chris's Aunt in Texas
972-977-8811
juwomack@gmail.com

JFGH (the group home organization)
JFGH
1500 East Jefferson Street
Rockville, MD 20852
240-283-6056

Chris's main caregiver:

Laye Dioumande

at Chris's home: 301-445-1259

cell: 267-736-1113

dioumande!jfgh.org

State agency oversight, service coordinator (outsourced to private company): 
(this one can change frequently)

Coordinator, Community Services
Total Care Services
301-232-8743
Orieshap@totalcare1.com

Good friend and former roommate
Alexandria Crespo
301-675-0645
sulac_69@yahoo.com

Chris's Doctors and Medications

JFGH keeps complete information about Chris's medical needs and treatment. Check with his primary caregiver - Laye - at the home, or the house manager.

Primary Care, GP, internist:
Dr. Jerome Herbers
Cameron Medical Group
8700 Georgia Avenue
Silver Spring, MD 20910
301-585-6049

We changed Chris's PCP in April 2016 because we needed the resources of a group, in case a single doctor is not available, and an office that is open five days a week. Dr. Herbers seems an excellent fit.
With regular visits from the visiting nurse, Chris sees Dr. Herbers only for special problems - not at all in the past several years.

In the summer of 2018 he found a nursing service that could visit Chris at home. That has cut down dramatically on the number of times that Chris has to be taken to an appointment.

Visiting Nurse
Mary Blanken
Boly Cross Health
blankm@holycrosshealth.org
301-754-7965

Dr. Herbers worried that Chris was having to see too many different doctors, always involving a trip in the house van. So he found a visiting nurse who now sees Chris every three months. The nurse is now monitoring and replacing Chris's stomach tube in addition to giving his annual physical and checking on him regularly. Occasionally there is a problem with replacing the tube and Chris has to go to an ER, so sometimes the staff takes him to his G.I. for tube replacement. In the spring of 2022 the nurse said she was about to retire, and the staff began looking for a new one.

Neurologist
Dr. Gregory Mathews
1400 Forest Glen Road
Suite 225
Silver Spring, MD 20910
301-456-5810
gregorymathewsmd@gmail.com

He diagnosed the seizures in Holy Cross hospital in January 2015. He still sees Chris about twice a year, mainly monitoring for seizures and the proper level of his seizure medication.
.
Neurosurgeon
Dr. Jeff Jacobson
Department of Neurosurgery
Johns Hopkins School of Medicine
4927 Auburn Avenue
Bethesda, MD
301-896-6069

Was a resident at Childrens Hospital for Chris’s first surgery in 1981.
Conducted Chris’s second major brain surgery, at GW, around 1990
Conducted less serious surgery in 2006 – removing part of the plastic plate that made up Chris’s ‘skull’ and had come loose – at Suburban Hospital.
Conducted gammaknife procedure in spring 2010.

In late 2009, when Chris was having more trouble speaking, chewing and walking, he found that the tumor had returned. No one wanted to put Chris under the knife again, so Dr. Jacobson conducted a gammaknife procedure in spring 2010. It seemed to be successful. But Chris soon began getting worse - especially in chewing, talking and walking. In late 2010 we checked him into Washington Hospital Center, and Dr. Jacobson oversaw the extensive work on him and identified the serious brain infection that may have caused much of it. He saw Chris at follow-up sessions in July 2012 and October 2014. We haven't been back to him since then, because any additional surgeries or radiation is out of the question, but he would always be available for advice and consultation.

Audiologist

Dr. Robert Baumgardner (ear cleaning)
1400 Forest Glen Road
Suite 315
Silver Spring, MD 20910
(The Physicians Office next to Holy Cross Hospital, off Georgia Avenue)
301-754-2290

For years Chris saw Dr. Robert Baumgardner to have his ears dewaxed, most recently in June 2018. Now that the nurse is cleaning out Chris's ears when she visits every few months, we are not scheduling more appointments with him.

Gastroenterologist

Dr. Kempanna Sudhakar
Adventist Healthcare
7610 Carroll Ave.
Suite 230
Takoma Park, MD 20912
301-891-2303

For years Chris saw a GI doctor every few months to check on his stomach tube. It can come loose and require a trip to an ER to have it replaced. Then the nurse began replacing the tube, but occasionally had problems. Chris began seeing Dr. Sudhakar again for tube replacement in 2022.

Foot Doctor
Dr. Adam Spector
Foot and Ankle Associates
2730 University Blvd. W
Wheaton, MD 20902
Or
15020 Shady Grove Rd.
Rockville, MD 20850
301-949-3668

For decades Chris needed special shoes with a brace, and he had a hammertoe problem that often made it difficult to get his right shoe on. Now that Chris cannot walk, he doesn't need the special shoes, or any shoes at all. Some form of house shoe can protect his toes from getting bumped, as he is pushed around in his chair. Dr. Spector is still important to monitor his right foot and keep its toenails trimmed.

He does a general examination every 4-5 months, mainly checking right foot; toenail trimming, etc. He has also helped with cuts on Chris's toes, pressure points and swelling. Last visit: spring 2018.

Dentist
University of Maryland Dental School
650 W. Baltimore St.
Baltimore, MD 21201
410-706-7039

After Chris could no longer open his mouth, he had to transfer from his long-term dentist in Rockville to a specialist, who had to sedate him and hold his mouth open with a block to clean his teeth. After a few visits, that dentist said he couldn't treat Chris any longer - largely because he didn't have a medical nurse on staff and it was very difficult to find Chris's veins to give him the sedative. So after quite a bit of looking around, we found the University of Maryland Dental School. Its Geriatric and Special Needs section sees Chris every six months or so, with different students and teachers cleaning his teeth and checking for cavities, etc. Even though he doesn't take any food or drink by mouth, it is very important to keep his mouth clean, to avoid bacteria in the stomach.

Eye Doctor
Dr. Theodore Gancayco
Washington Eye Specialists
1160 Varnum St. NE
Washington, DC 20017
202-635-1017

Now that he can't speak, or respond in any way, a normal eye test would not work. We learned that some eye doctors can "read" the imperfections in eyes with a machine, like the one that tests for cataracts. In January 2014 Chris went to Washington Eye Specialists in Washington, who managed to develop the prescription. They also take medicare. The exams are fairly crude, but they can find any major changes as well as look for related symptoms. We aren't sure of their value, and Chris has not seem the eye doctor during the pandemic.

Medication
Chris takes all his meds with his nourishment through the stomach tube. His meds are managed by his caregivers at the group home.

The prescriptions are filled by ALCO Pharmacy, which sends packaged supplies directly to the group home. They must be renewed by the visiting nurse or Dr. Mathews. We receive a monthly invoice for the amount not paid by Medicare. The group home keeps an up-to-date list of all meds. They administer them with his morning and evening feedings.


Wheelchair
Chris has a customized wheelchair, made before his 2015 setbacks, that was funded by Medicaid. Even though we had it remodeled in 2016, it doesn't meet his current needs. We began the process of getting Chris fitted for a new chair just before the coronavirus crisis. We'll get back to that afterward. For now, the chair is maintained by New Motion, which acquired its original supplier, Med Inc.

Julie
New Motion
410-298-4555

Transporting Chris
His legs do not bear any weight, so it is very difficult to move Chris to and from his bed, wheelchair, a car, etc. His caregivers know how to do it, but it's hard - and dangerous - for others to try. At his home he has a special mechanical lift above his bed to help move him to and from his chair.

JFGH has a van that they use to transport him. If for some reason it isn't available, Washington has a Metro Access service, which provides subsidized wheelchair van rides. They must often be booked at least 24 hours in advance. His Metro Access card is in his wallet. 

MEDICAL INSURANCE INFORMATION
As of December 1, 2011, Chris began receiving help from Medicare.  He has Part A and Part B. He is also signed up for a prescription program.

He is still covered by Medicaid as a back-up. He has a 'Maryland Care Programs' card.

He has both the Medicare and Medicaid cards in his wallet (which is usually in his bedroom). Also his Maryland photo-ID.


Updated 4/15/2022