First Re-assessment Results - yahoo!

Dr. Caroline, our DPT, suggested that we re-assess Dave's tests monthly, following treatment.  In the end we saw her nearly weekly for the first month as she was very helpful in recovering from the liposuction.  For a few weeks he had a lot of swelling and fluid build up in his abdomen, so she was helping us sort that out.

Our initial assessment was broken into two sessions, so the re-assessment was as well.  And, due to some scheduling snafus, we didn't complete them until 5 weeks post treatment.  But the news was very positive!

Our first session was actually late in the day, and David had been fatigued all day anyways.  Yes, he continues to have good days and bad.  So we avoided the strength testing that first session and performed some more coordination testing.  She also had some before videos of him, so she took after videos too.

The videos were dramatic.  For the walking across the gym, on the retest he took his sticks but didn't think about using them.  His torso is distinctly more steady, and his gate is stronger and more straight forward.  Less using the hips to swing his legs and more using his leg muscles correctly.  Same with the sit to stand test.

When we got in again for the strength portions of the test -- well the numbers are outstanding!



Leading the charge, the 2 minute walking test on the treadmill showed a whopping 150% improvement, and he was far less tired the second go around than on the first.

I can't say how pleased we are to be working with Dr. Caroline - not just for all the advice and encouragement she has provided all these months leading up until now, but these measurements have been so instrumental in convincing us that David is making huge improvements - even when they may be easy to take for granted on a daily basis.

It's the little things

We were very happy to host my parents and my sister's family for Thanksgiving this year.  We had some big things to be thankful for!  Not the least was that it was our first Thanksgiving since handing over the kennel to new owners, and we could actually spend time enjoying the holiday for the first time in a very long time!  It was bitterly bitterly cold here, so we didn't do much but stay in the house and cook, and eat, and talk, and play games.  What an ideal holiday!

But also Dave's Stem Cell recovery progress was continuing to look positive, even though the changes haven't always been very apparent - to him especially, but to both of us to some extent.

We were fortunate to have spent some time in Maine with my parents in September - we had rented a house and so did quite a bit of our own cooking.  We were also out sight seeing and hiking a bit.  Mom was quick to observe that she could see a difference in Dave's ability to maneuver in the kitchen from just 2 months prior.  Ginger, our business partner chimed in that Dave was now prone to forgetting his trekking poles - either in the car or in the office.  Annoying as that is, to keep having to retrace his steps to get them, it's hugely significant that he 'forgets', at times, that he needs them to walk.

My sister pointed out that while playing games, Dave was quicker to make decisions, and stayed more present in the conversation - an observation that was also made by our friend Sheron.  For years we've been discussing how much of a cognitive impact has the MS been having, but that is such a difficult thing to assess.

I have to say, I had my own occasions just prior to TG to wonder about the changes in Dave's thinking - when we broached the idea of putting sky lights in the workshop roof for yet a third time.  Dave has, for a long time, had a stubborn streak in him that drives me batty.  Usually its over things that I disagree about....  Such was the case of the sky lights.  Yes, sky lights would be super useful as there are no windows into that room.  But they also vastly increase the complexity of the roof -- that we really wanted to get finished because snow was in the forecast.  Of a workshop.  Of a property we intend to sell in the near future.  I just couldn't get him to agree that sky lights were way more complicated than they were worth...  Until 6 days before Thanksgiving and we were at the ranch to hopefully put in a power-day to get a lot of that roof done.  And....  Dave just up and changed his mind.   (Saw the light?).  Honestly, I was speechless - for by then I had zero hope he would come around.

It was so great to have these wonderful people around us, who could share with us the changes that they could see when we were having some difficulty in doing so, and confirm the other changes we think we see but aren't sure.  This recovery is a long road, we know, and it's only been a few weeks, but it's so hard to wait patiently.

The Honeymoon

Note: this entry was originally composed for email, 11/11/15 

It's been a week since Dave's procedure, so I thought it time for an update.

First of all, the procedure went very smoothly with no complications. He did opt to take the anti-anxiety meds, so he was fairly spaced out the rest of the day, but no harm to that. The next day the anesthesia had worn off of his abdomen, so that soreness came to the forefront. But that was mostly just discomfort.

We saw our physical therapist on Friday (Day 2 post procedure) -- and we finally broke down and asked her whether it was too soon for us to be observing changes since the procedure. She said that no, her husband and her son had both seen some changes immediately. So I asked Dave if he thought he was more able to lift his toes while walking, because a number of times it had seemed to me that he had been able to walk stronger, with quicker and longer steps. He agreed that he had noticed the same things. We were incredulous, given it was just two days later. But Caroline's main message was that as he notices changes - he needs to keep doing those movements to help the brain learn to retrain those neural pathways. So if he's able to walk - then walk more and try to walk correctly. She said to expect those walks to tire him out quickly, because those muscles are so weak for not having been used for so long.

That night at home Dave did something really astonishing - kneeling down on the floor, and standing up again without leaning on anything. He hasn't been able to do that for... years! (in fact as my sister pointed out, I'm not sure I can do that either) I was close to sending an update right then - but held off thinking it was too soon.

And I'm glad I did, because those improvements essentially disappeared on Saturday. Over the weekend we didn't do a lot. His stomach was still sore and very tender to the touch. But he continued to have moments when we could just tell his walking was stronger, but then moments when it seems nothing has changed. He certainly has never been able to get up off of his knees unaided again. 

Tuesday we had a followup with the Stem Cell doctor. He was fascinated to hear about his 2 day period of dramatic changes. He said that essentially exactly matches the experience that the majority of his joint-pain patients experience - a 1-2 day "honeymoon" period of immediate improvement that then fades. He's never treated MS before, so he was very interested that Dave had his own. He has no explanation for the honeymoon phase, because nothing physically can have taken effect yet. In reality, he said stem cell changes take weeks and months - so we are not to be discouraged by waning progress, and that it isn't likely to be a linear process either.

So - we will continue waiting and watching. And walking. Monday he walked to the end of our block and up the 4 stairs at the end - with little help from his walking sticks. He was wiped out by doing it, but it's something he couldn't have done a 8 days ago. It'll be another 3 weeks before Caroline will re-run the battery of measurements she took from Dave prior to treatment. We'll let you know how that goes!

Beyond the barriers

Note: 6 weeks after Dave's first stem cell procedure - I decided to blog about our journey instead of the emails I had been composing to family and friends. So these first few entries are in order, but were not posted at the time events were happening. 

 Dave's first attack was in 1995. Following a bout of flu, his entire left side went tingly and he lost most of his strength in his left arm and leg. (yes, he's left-handed). The GP escalated our case until we got to a Neurologist. Thank goodness our initial team was MS savvy enough to get us there in a relatively short time. His MRI revealed plaques - one of which was right in his spinal column - the swelling of which was cutting off the nerves to that side. 5 days in the hospital with steroids reduced the swelling and he was good to go. Meanwhile, the plaques were consistent with MS, but again, at that time MS couldn't be diagnosed until you'd had "Multiple" attacks over time. We were told to go home and assume this was a one time deal stemming from an immunological over reaction to the flu. 

Two years later, David had an attack that left him with such severe vertigo that just getting from the bed to the bathroom was nearly insurmountable. That GP told us -- "Oh, No this couldn't be neurological" ... so sent us to an ENT to check for ear infections. *sigh* At least the ENT was quick to get us referred back to the Neurologist. And voila - MS was diagnosed.

For about 12 years he was on series of interferon treatments, which worked very well to control the disease - no one could tell he had anything unless we told them. Until about 2012. He started having more difficulty walking. He got slower, and fatigued quickly. Tripped easily. Unfortunately we were so attuned to ignoring the MS - we were very slow to react.

In the spring of 2013 we took an amazing trip to Costa Rica, where we road horses for 5 days from the mountains down to the coast. It was the first time he'd taken trekking poles with him - to use if he needed them. Didn't need them much, but it was clear things were progressing in a direction we were not happy about.

Over the summer, we visited a handful of notable neurologists in the area looking for one that was better suited to tackle MS than the one David had been with. We were quite pleased to select Dr. Tamara Miller who practices in Fort Collins. She put Dave on Tysabri - which to our delight was a once-a-month infusion rather than weekly, or multiple times weekly, injection.

Unfortunately, his MS has continued to progress. He has significant difficulties walking, and fatigue and bladder issues are a daily if not hourly struggle for him. His trekking poles are nearly always necessary. I guess there is still some fuzziness as to whether he has moved into a Secondary Progressive stage of MS or not (something I had thought we had declared in 2013 but in talking to Dr. Miller now she isn't willing to definitively state), but clearly he hasn't responded to either of his treatments in the past few years; treatments which are only effective for the Relapsing-Remitting form of MS. Something, for sure, changed a few years ago.

Of all people, our physical therapist, Dr. Caroline Creager, turned us on to a doctor in Loveland who is doing some very interesting things with stem cell treatments; specifically adipose tissue-derived mesenchymal stem cells (AD MSC's). Meaning they are collected and extracted from abdominal fat.

So HEY! Bonus points for the fact that this treatment means he gets to get some liposuction! (sadly, not enough to change his body image...)

This doctor, Dr. Pat Mallory, is a DO - Doctor of Osteopathic Medicine. His practice specializes in treating people with chronic join pain with stem cells, and he's had some remarkable success. Interestingly enough, we have a horse who is going through a very similar treatment now for a torn ligament in his hind leg.... because these treatments are always approved for animals long before humans.

Dr. Mallory also uses stem cells to treat other conditions - he's just not an expert on them. He has treated patients for COPD and ALS. Not MS, however.

Our physical therapist has a son with a very unusual spinal disorder. Dr. Mallory did his first "intrathecal" (very low in the spinal column - basically a spinal tap in reverse) injection a few months ago, and a few weeks ago did his second. He's been making a lot of improvement - his pain for the first time in years has been minimal to completely gone. In the week following his first injection he not only made it to school every day on time, but also opted to go hiking with his buddies - something that was out of the question just a week prior. I believe either the improvements fade, or they at least plateau, so they anticipate needing repeat treatments. Sadly this is quite difficult for them because.... their son doesn't have any more fat to harvest cells from!! This is at least one problem David doesn't need to plan for (nor I for that matter).

We've spoken a few times with the researcher in Florida who has pioneered this technique to extract MSCs from adipose tissue. According to her, the significant differentiator of their technique is that it produces a far greater number of viable stem cells - as opposed to techniques that extract stem cells from blood or bone marrow. She has used this technique on some MS patients - but less than 10. The results have been different per individual, as MS tends to be anyways. Ranging from little observable benefit to dramatic improvements.

So. Our physical therapist is in the process of getting a baseline status for Dave, physically right now. I expect she'll repeat the assessments monthly following treatment to track progress. His neurologist has taken a fresh set of before-MRIs, and will also be monitoring his progress. It's generally acknowledged that a disease like MS will require repeated treatments - which in itself is another whole ball of FDA wax - but we'll deal with that when we come to it.

And... you might wonder - doesn't me losing my job throw a wrinkle into the plan? Interestingly enough, not really since this treatment isn't currently approved by the FDA, and thus is not covered by insurance anyways. We will of course have Cobra to fall back on for ancillary stuff.

It's worth noting that we have investigated a number of clinical trials that are going on now using stem cells on MS. I admit that I did that research somewhat to appease Dr. Miller, since is has been her unwavering position that she can only recommend participating in a fully regulated clinical trial. Our observations are:

• none use this particular technique of extracting cells few use an intrathecal injection - most are IV only. But to treat a central nervous system disease, even if some IV cells cross the blood brain barrier, it would be far fewer than injecting directly into the spinal column. 
• because the FDA is so far behind in this technology - very few studies are focused on clinical improvement of the patients - but more focused on establishing that the treatment is safe. Europe is far ahead of the US in stem cell therapy and Dr. Mallory can attest that athletes have been traveling to Europe for treatment for many years - when he's only recently started to be able to offer it here. 
• the studies we found looking for clinical improvement, are testing a protocol where the immune system is first destroyed with chemotherapy drugs and then stem cells are introduced to help rebuild the immune system. No thanks. (actually, recently we're seeing trials that are foregoing the kill the immune system step - we will cross our fingers they prove as successful.) 
• the studies we found focused on clinical improvement are largely cross over studies - so that both 'groups' of subjects get the treatment, but you don't know whether you get it immediately or will start getting in 6 months. David's neurologist doesn't want him going more than 3 months without treatment, so it seems like a huge risk to enter into that lottery. 
• all clinical trials would require travelling to one of their sites in the US or Europe - multiple times. And many require the subjects to pay for the treatment as well. 

It is a reaction to Dr. Miller's position that I've named this series of blog posts "Beyond the Barriers", because it does feel like we are going off-road here, into uncharted territory. For the first time we are taking the lead in setting his path forward, simply because the other available options just don't seem to have much to offer us. But moreover, we are hoping that this treatment will not only help halt the MS progression, but also help David regain some of the functionality he's lost. To break through the barriers that the disease has been erecting around him.

So sticking with a local doctor, whom we know will be administering stem cells immediately and allowing our local neurologist and physical therapist to help monitor his progress - the choice, terrifying and difficult as it was, was simple.

Dave's procedure is scheduled for November 4th.

I became a world traveler at 3

In 1973 my family embarked on a round-the-world trip that took us to Japan for several months before boarding the Trans Siberian Express to Moscow and Helsinki. My father was on sabbatical, visiting a number of physicists and their laboratories in Japan and the Soviet Union. That alone was quite unusual in those days -- in the height of the cold war.

But he also brought along his wife and 4 children, aged 3 to 17. This made for quite an unusual journey - dare we say, an odyssey?  Luckily, my mother insisted that she and my older siblings each keep a journal.

On deck of the ship taking us from Japan to Russia

In Red Square, Moscow

Some 30 years went by, but the effects from this trip remain prevalent in our lives.  One of us still has that traveling edition of monopoly that my siblings created in our little apartment in Japan.  Even my in-laws can quote some of the sayings that "cute little Monica" came up with.

So it came that a little over a decade ago my sister Nancy typed up the diaries into a combined work.  That manuscript (if we may label it as such) was a highlight of mom's 70th birthday celebration for which we were all together to celebrate.  We read passages aloud - chuckled at the idioms of the day and the non-sequiturs that are endemic in unedited diary entries.  It's quite funny to see up to four different accounts of the events on a particular day - whether it was different points of view on a common set of activities, or more so when each chose different events as the most significant for that day.

Yep... Cute Little Monica

All of us on the Trans-Siberian Express
(plus a curious boy - LOL!)

We joked about publishing.

And then self-publishing came around, and -- a long story of the process of a family co-editing 40 year old text turned short -- we've done it!

You can find the book:

Eastern Odyssey

A family journal of our trek through Japan & Russia in 1973

on Amazon
AND Barnes & Noble 

Since I was just 3, I am left with only a few authentic memories from the trip. Like the bus driver in Russia who took a shine to me and cracked pine nuts for me.  And the Japanese amusement park that had trampolines mounted in the ground that you could bounce back and forth on.  And that time I got knocked off my feet by a soccer ball in Geneva.  For me, reading the diary was not a 'remember the time when...' experience since I have so few recollections of the trip -- so I feel a little more a-kin to our readers than our authors.  I found it to be a compelling story, I hope you do too!

(Find us talking about the journey and the journal on Facebook!  https://www.facebook.com/EasternOdyssey1973FamilyJournal/ )