The first message

TO: Our friends and family

Phyl asked me to send you an update on what is happening here.  You are welcome to share this with others….

As you know, we got a lousy diagnosis on Monday.  Phyl has ALS, Lou Gehrig’s Disease, and it is terminal.  It was pretty much expected but it was still a shock.  This time, unlike the preliminary diagnosis on March 15 (the Ides of March, no less), we got through the shock more quickly.  On Tuesday, we had a short bike ride to town for coffee and I know Phyl was pleased that she could do it!  She is planning a longer bike ride with Jen, my sister-in-law, tomorrow.  The neurologist at Lahey ALS Clinic says to exercise all she wants but not to over do it.  Her legs get tired if she pushes herself and then her walking becomes more labored.

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She loves her bike and can still ride! 

Yesterday she went to acupuncture and then to Mass MOCA (art gallery in the Berkshires) with her girl friends, and an exercise (stretching) class in the evening.  This morning she is swimming at the health club and plans on a dog walk with Gabe (Jeremy’s mother-in-law).  She has a pretty good attitude much of the time but underneath there is a sense of fear that most likely won’t go away.  If we focus on today…. life is good.

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Support for Phyl shortly after her diagnosis

We are busy putting in place the medical and emotional support that we will need over the coming years.  Here is what we are doing:

We signed up for the Lahey ALS Clinic program of visiting every two months to meet a team of experts; nutritionist, occupational therapy, and physical therapy and a few others I can’t remember.  The first visit is May 15. They offered us a session on Monday but neither of us are ready yet.  I picked Lahey because they focus on patient care and we liked the neurologist who treated her Aunt Helen.  The clinic is in Burlington, MA and it took us 20 minutes to get there from Jake and Shannon’s house in Somerville.  As long as she can manage the stairs at Jake’s (it is a bit daunting for healthy folks), this means regular visits with Noah and Colin!

She is getting weekly acupuncture from a local guy who happens to be a friend from her pottery studio (and is giving us a discount)!  We were accepted into a Mindfulness Medication research study with Penn State University.  This is an online training for both of us.  They monitor disease progress and emotional health and compare it with a non-participating population of ALS patients.  So we are research guinea pigs!  We have our “intake” phone call and instructions next Thursday.   Our neurologist at Lahey knew the research scientist at Penn State and thought this was a great idea.

We have our first meeting with a Functional Medicine doc on June 1 to begin a nutritional assessment and toxicological screening (thanks to Belita who works for a Functional Medicine doc in Colorado and guided us on the whole process).  I”m learning a lot).  There is some data suggesting that nutrition can improve quality of life and slow down the loss of muscles.  While it is unproven, it is also harmless and the Lahey nutritionist will be consulting with the Functional Med doc so we will have two opinions on what to eat and what not to eat.   Weight loss is the primary concern.

Phyl is in the process of lining up a therapist locally who specializes in chronic illness.  Having a place to talk about fears and expectations is important.  She is able to talk with me about this but it is not easy, as you can imagine.   And we have a Mindfulness Medication training on Tuesday night with a woman who also does chronic illness therapy.   We have also been doing a guided 15 minute medication each morning which she seems to like.  Everyone in the ALS community seems to agree that mental health and attitude is critical.  One of her strengths is her positive attitude.

Finally, I am searching for clinical trials and research that we might explore.  We don’t expect a cure for the disease but hopefully a treatment to slow down the muscle loss.  The most promising work seems to be on stem cell infusions which have been shown to delay the development of symptoms in limited studies.  The drug therapy is interesting too but there is only one FDA approved drug and it has minimum effect.   The FDA is expected to decide on another drug that is available in Japan in June, but who knows what they will decide.  There are lots of snake oil sales folks around who want to sell a cure to desperate people.  While I pray for miracles, we are not planning on one.

I am trying to better understand stem cell therapy.   While I am surely more comfortable with plant biology, it is still biology  – so I’m reading the research papers.  I’m signed up for a webinar with Mass General on May 22 to learn more about stem cell research.   There are plenty of commercial labs around who will take your money for unproven treatments (cost is about $20,000 and this just pisses me off).  The web pages all sound great but they rarely connect you with the original research which makes me suspicious.  I am trying to read the research articles and understand what might be expected.  Mass General and the UMass Medical Center are among the leading research hospitals in the world and are about to launch a new stem cell trial with an Israeli firm which seems legit.  So… we’ll see!

We are on a “waiting list” for information about clinical trials and access to a form of stem cell infusion that has shown some promise at Mass General and UMass…. along with a lot of other folks I expect!   The most interesting stem cell work seems to take a person’s own cells, grow new stem cells and “trick” them into making motor neuron cells with your own personal DNA.  The difficulty seems to be in delivery to right location.  A spinal infusion is a bit un-targeted but its the best there is at present.  It seems to be a ways away from any kind of proven success which would be required for FDA approval.

For me, the most important job is to keep her engaged in life and connected to her family and friends. That is where you come in!  Please continue to talk to her on the phone or just send her a text from time to time.  She smiles when we get at picture of our grandchildren or a text from Jeremy about the Red Sox or from Jake about the Cubs!  Texts are great as she is busy during the day.

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Phyl’s favorite job is being GG to these boys….

She is not responding well to advice from folks about cures.  We got a long voice mail yesterday from a well meaning person who wanted her to know about all of the research he had done on her behalf, with lots of suggestions about new experimental drugs and what I see as “witch doctors”.  Frankly, this isn’t helpful.  She has asked her friends to contact me with suggestions, remedies, doctors, research information etc.  I am happy to sort through all of the information and share what I find useful with her in a way that she can hear.  Phyl gets upset when people feel compelled to share their suggestions about what she should do.  She is telling them it is okay to email me.

So that’s the story.  Let me know if you have questions.  You have my email and my cell is 413-687-7798 if you want to text or call.   We are looking ahead at many years of learning how to live our lives together with this disease.  Supporting Phyl is now my primary job in life and I am grateful that we have an opportunity to do this together.   Our sons have shown a degree of maturity and care which should not surprise me, given who their mother is….  We are both blessed with a supportive family who love us.

Love to you all….

John


Click here for the next email in Phyl’s story

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