August, 2020
As I wrote this the great g tube debacle just kept getting worse. Stanford Health Neuromuscular tells us to go to the Interventional Radiology Clinic who tells us we need the procedures group who tells us to go to the Clinic. Both groups tell us they can’t do anything without a referral from Neuromuscular which told us that we don’t need a referral. Kafka would be proud.
Thank goodness our neurologist took it upon themself to reach out, give us the lay of the land, and suggest we go back to the original surgeon. After informing St. Laurel, about a month late and to her well justified dismay, that I had no problems with the surgeon, we made an appointment. Thankfully the tube exchange turned out to be the elusive 15 minute procedure and I made it home with time to work on the blog.
The above shows the inability of a world class, but over siloed, medical institution to handle a standard procedure for pALS. It also shows a crying need for someone on the clinic floor to make sure the patient receives necessary medical care rather than phone tree hell. Were it not for the neurologist taking the initiative to call us after hours St. Laurel would still be listening to hold music.
Other silos, such as Oncology, have case managers (which I’ll call CMs) which can act as patient advocates and care coordinators. In a disease with so many medical and non-medical impacts why not ALS? It’s the F word.
Funding.
I suspect that because a CM is not reimbursable by insurance, independent funds must be used. I further suspect that it is much harder to fund raise for disease management than it is to fund raise for a disease cure. Encouraging the best minds to research integrated ALS service delivery, and securing grant money for that research, will be difficult because no one will ever win a Nobel Prize over patient care. Notwithstanding, this is the three legged stool that must be built to get CMs into the ALS clinic. I will leave it to those of you smarter than me to throw down some comments for all of us.
So why not wave the magic wand and see how this type of CM could work in the real world. Caring for us pALS involves a lot more than medications and procedures. At some point we’ll need help with showering and toileting or, as I like to call it, washing and wiping. Because we thought it was important for St. Laurel to keep working we decided to look for a caregiver.
I contacted my CM at the ALS Association Golden West Chapter who dutifully sent over a list of names and numbers along with the usual disclaimers. Foreseeing hours of phone tag, interview, and try outs from hell, I took another tact. I reached out to a colleague from a business referral network (Provisors if you’re dying to know) who was involved in the elder care industry. She referred me to a colleague of hers who interviewed us and candidates at a caregiver agency. We met the preferred candidate, spoke to references and negotiated an offer. We recently celebrated our first anniversary with my caregiver. Whoop whoop!
Through the efforts of professionals in the field, we were spared the time and frustration of conducting our own search for a critical member of the care team. Although we were certainly fortunate, our experience here shows that the services necessary for us pALS can be delivered with a minimum of fuss if the proper resources are available to guide us through an unfamiliar process.
Embrace The Suck 
Nothing like having knowledgeable and caring friends, Bob! What a success story evolving out of unbelievably bureaucratic institutions! Sounds great that you were able to get this resolved in such a satisfactory way! And I know that your caretaker must be just as satisfied that your selection went the way it did! I’m sure I am but one among many in awe of your ability to push forward in the face of incredible obstacles before you! Are you able to have access to YouTube programs such as the “Three Irish Writers” about Brendan Behan, Patrick Kavanagh, and Flan O’Brien (Brian O’Nolan)? This is a four-part program of 15 minutes each, for a total of an hour. I’ve been “into” this crowd for a bit now and just finished two biographies on Behan and two on Brian O’Nolan. I also just finished a critical study of Seamus Heaney that I knew I needed to read if I were going to understand Heaney’s poetry. Very helpful, but I can’t say I’m all that understanding yet! Hope beats eternal! Take care, Kay.
LikeLiked by 1 person
Great post! Thank you for sharing ❤
On Fri, Sep 11, 2020 at 2:27 PM Embrace The Suck wrote:
> embrace-the-suck.blog posted: ” August, 2020 As I wrote this the great g > tube debacle just kept getting worse. Stanford Health Neuromuscular tells > us to go to the Interventional Radiology Clinic who tells us we need the > procedures group who tells us to go to the Clinic. Both groups ” >
LikeLiked by 1 person
Bob. I thought of you today. I was at the Neuromuscular Health Center at Stanford. I got a lumbar puncture as part of clinical research study. They mentioned they are doing lots of Spinal taps as part of a clinical trial for ALS. Apparently they are making good progress in the trial. This is as much as I know. I also got a lesson on how hard it is to get older participants in these trials as control subjects. They can get college kids to volunteer but older folks are a bit tougher.
Glad you got the G-tube handled. It is a simple thing that should be easy for them to do. We do it at home and only had one hospital visit due to a g-tube.
LikeLiked by 1 person
Bravo – You nailed it funding! funding is low for most diseases outside of cancer. Coordinated care by case manager is a great idea for pALS and others; being on hold forever is very frustrating…..geez I hope Stanford reads your blog- they need to! Marie
LikeLike
Thanks for a great contribution, Bob. I’ve forwarded you blog to someone else who is involved in ALS patient care. You are an inspiration to those of us who still aspire to make the world a better place.
LikeLiked by 1 person
Hello Bob. My son, Eric Valor, lived with ALS for 15 years and died on 11/27/2020. He lived with us in the 10 years and I was the administrator for his healthcare. You can read his contributions on YouTube. Eric was IT Manager for Mercedes-benz Research and Development/North America.
He was very involved in ALS research and was on the board of Steve Gleason’s foundation, as well as being involved with the ALS/TDI organization.
His first feeding tube was put in incorrectly, became infected which resulted in emergency removal and replacement.
Over the years we had numerous caregivers as Eric required 24/7 care for the last 11 years. Eric spent most of his nights working with PALS in other countries, assisting them with computer problems and aiding in getting them medical equipment.
In the 10 months since his death, we have given away all of his equipment with the exception of the wheelchair. If you know someone who needs it let me know.
Best Regards to you and your wife.
Joan Valor-Butler
LikeLiked by 1 person
More insanity rivaling some of the runaround Pam D is getting from the Transplant folks here. And when you think of so many issues that could be dealt, coordinated and resolved lower down in the medical hierarchy (and cheaper for the beancounters) it’s disheartening. Hope the fires and crap air quality haven’t impacted you too severely.
LikeLiked by 1 person
Bob- Your journey must be exhausting but it’s so wonderful that you are sharing it and I hope you can make your concerned known to the medical community. I love your reference to Laurel as St. Laurel! I’m sure she feels the same about you. Caregiver references are the best way to go- it’s daunting without them- we found that out in finding one for my dad- we got very lucky. Take care and thank you fur your insights.
LikeLiked by 1 person