Cog fog is one of the most common debilitating symptoms of MS. And I do not have it. OK so this post might be mostly me telling you how awesome I am, but hear me out there might yet be something of value for you.

When I was diagnosed with MS, I was studying to get a master’s degree. But I continued towards earning that degree.

My first relapse after diagnosis which also was my biggest was when I was an intern and learning new hard stuff every day. But I continued without a break for 1 year.

For the next few years, I had many reasons to quit working. But I didn’t. and I am still working as much as life allows me to.

My husband and I have a pact of learning something new every year and then teach each other. This year he is engrossed with stocks and shares while I am engrossed with neural networks.

My ‘Point’ is that my brain has been constantly active. I believe this helps the brain find ways to cope with its disabilities. I am convinced that this is a sure shot way to escape cog fog. The idea is so simple, it has to be true.

So, go ahead and learn something NEW today.

 

 

I think that those are the most useless words in the English language. Any time I look up new research in the field of remyelination (The science of filling up the holes in my brain), I see an onslaught of these words.

There are studies looking at how “Taurine Enhances Remyelination In Multiple Sclerosis Damage” and “Oligodendrocyte differentiation into mature myelin generating cells”. Did that sound like a string of un-pronouncable words? Do not worry. These are usually followed or precurs-ed by a ‘may’, ‘might’ or ‘potential’. And then it starts to look increasingly clear that the research is progressing at a snail’s pace.

I get how the effort is in the right direction. But…

Oh and did I say I hate mice?

 

Here is what I was looking at today:

https://sciencebeta.com/taurine-oligodendrocyte-maturation/

 

TODAY January 9th is one year since HSCT, 1 year since my immune system was re-born. A birthday of sorts.

I am still on the road to recovery. A road with lots of potholes. My recovery has been slow needless to say, but I want to keep a record of how things change, if they change.

Tabulated below is what I can remember in terms of symptoms. The changes are definitely a reflection of physical therapy and yoga, but it is largely a reflection of TIME. I am hoping that I will have more green cells in the next few months and years.

Another important measure is EDSS.

Pre-HSCT my EDSS score was 4.5, and now my EDSS score is 6.0-6.5.

So yes, this has gotten worse quickly 😦 , But since hope is all I have now, The Hope is that it will get better.

 

 

In my last post, I said

“blah blah .. travel sets you back a couple months in your recovery and you’ll be surprised by how much you need that assistance. But do not worry, you generally bounce back soon.”

What a load of **unpleasant stuff**.

I have had such a setback in my recovery that I cannot really describe it. So fatigued, and so weak.

For other HSCT’ers, it is no joke when someone says that every virus sets you back. I have come to realize that travel is a giant virus as far as our bodies are concerned. But in all honesty though, here I have traveled across the planet. Surely the distance makes a difference.  As if that was not enough, I am working nights to keep up with my work in USA, while also enjoying just generally hanging out with family during the days in India. Again, this self imposed lack of sleep is not helping.

So new recommendation:

Please sleep whenever possible. Don’t be like me.

My first international travel since HSCT and I traveled alone – 27hours!

And, it is completely doable. These are the benefits of being alive in this century.

I also 100% know that I could not have done it without wheelchair assistance. It is liberating, notwithstanding the stomach bug that I had to endure which was probably my own fault.

Having finished the travel, these are my recommendations:

• Get an aisle seat for each leg of any flight travel
• There is no shame in getting wheelchair assistance irrespective of your EDSS, because travel sets you back a couple months in your recovery and you’ll be surprised by how much you need that assistance. But do not worry, you generally bounce back soon.
• Take medication or have a way to counter motion sickness
• WEAR A MASK – no matter how far you are from HSCT. I made the mistake of forgetting my mask, and so the bug. I basically threw up more times than I got something in. Remember that there are at least 200 humans on that plane if not more and the chance that every one of them has no bug to share is nil.
• Choose a vegan/vegetarian meal plan. The next best thing is to carry food cooked at home. Actually that might be the first best thing.

Let the fun begin 🙂

 

 

Since Dr. Burt closed the clinical trial, I was a little unsure of what next for 10 long minutes 🙂 Thankfully I got the transplant before he stopped the program in Northwestern Memorial. Now what exactly is next for me? I will explain in a bit.

In a previous post, I had mentioned how Dr. Burt called this transplant a ‘Hail Mary’ option for me. But the fact is that even though I am not visibly better nor do I have symptomatic improvements, I have no new lesions in my brain and spinal cord. And that is a win.

There is a statistical 85% chance that the transplant worked for me. And given that I have no disease progression at this point, I count myself as one of the lucky ones.

So what is next? Assuming that the chemotherapy and stem cell transplant halted my disease progression, the next somewhat obvious step is to remyelinate my nerves. Remyelination seems like the next big research topic in the medical world. I say this based on the number of new studies that are registered each day in clicaltrials.gov. Now the only hope is someone figures something out in my lifetime.

Meantime, I am not simply sitting on my rear-side hoping for miracles to happen. I have been actively courting the research groups to see if maybe they want a trial subject. Because, why not? Right?

But I have found out that in my world being young (ish) is a problem. I am too young for new plasma research. Every day I find that I am too young for several studies that require a post-menopausal female. 😦

After far too many times satisfying the exclusion criteria, I found one that will have me. yay!

I am now candidate #3 in a research study to analyse how magnetic stimulation will help the brain do what it is supposed to. In this case they are specifically focussing on the areas of the brain that order the bladder to start the voiding process, when full.

Some background:  One of my first symptoms was the inability to completely void my bladder. This can further present itself as frequent need to pee (is that an okay word to use?), frequent UTIs since the bladder has lots of residue.

This is not my originally intended remyelination, but my hope is that if my brain re-learns this basic function, I can **maybe** over time teach my brain to find new neural pathways to achieve this task, basically take a scenic route around the lesions (damaged nerves) (Google search term: neuroplasticity)

In any case here I am looking very Prof. Xavier like

 

And yes I am working from hospital 🙂 (WFH)

 

Before MS: BMS, After MS: AMS

Circa 2009 BMS, I was training for a marathon. I only got to 5 miles with no breaks before my diagnosis. But it was 5 miles I haven’t run since.

HSCT recovery is often described as a roller coaster. But I am yet to feel exhilarated by that coaster. And I am yet to get on the upward path. AMS 2019, after HSCT I told myself that with all the PT, exercise, yoga and a general feeling of positivity, I will get better. But I am still stuck in some endless loop around the bottom of that coaster track.

My goals have changed from ‘Run a marathon’ (haha) –> maybe a 5k –> walk to park (1 mile away) -> walk with cane to fire hydrant (0.3miles away) -> walk without a cane to end of driveway (no miles away). If someone is following my progress via this blog, please know that the progress train is not yet going. But the driveway isn’t going anywhere too. Nor is the hydrant or the park or the…you get the drift.

I will update when I get there 🙂

Disclaimer: This is a definition for me, for my kind of MS. Google still has the most accurate meaning.

I am in remission for almost a year now. What that means for me is that MS has taken a break and I have no NEW lesions on my brain/spinal cord when compared with the MRIs from July 2018. This was the news I got during my 6 months follow-up with Dr. Burt.

What remission does not mean for me unfortunately is that I am cured or that I can now run a 5K everyday. But this is still great news because the fact that the disease seems to have stopped opens up a path to recovery. A path to life as close to a cure as I can get.

I am looking at logical next steps for remyelination. It is still in the mice stage of a medicine’s lifetime, but I am hoping something will succeed in my lifetime.

I am happy to state that I seem to be back physically to my pre-HSCT baseline. What that means is that I probably still need a cane, I have limitations to how far I can walk. But, I’ve never met another person as happy as I am to be going backwards 😀 😀

 

Call me too optimistic, but this blog post was in my drafts with this exact title. I planned to post this blog five years post HSCT to gloat about all the wonderful strides I have made, plus the fact that my disease was  in clinical remission.

Unfortunately I will not have that happen exactly as planned, because Dr. Burt closed the clinical trial 😦 😦 😦 He has decided to take a year off as a research sabbatical. While he is definitely entitled to it (After decades of being on call 24/7 for the trial), I will not lie, EVERY patient – past, present and hopeful – is sad.

I was one of the lucky ones who at least had a 6-months-post-HSCT follow-up (July 30 2019). And like I hoped, my disease is currently in remission. < insert joyous jumping and lots of celebration emoji> (Note – wordpress did not have this emoji)

Dr. Balabanov (study neurologist) watched me walk and recommended to keep doing PT. Hippotherapy was also recommended but I have to do some research about that. My platelets are low. So my general physician will be ordering regular blood work to monitor that. And IF these numbers hold steady, I get to travel internationally. “Amma” – I am coming 🙂

I did want to thank everyone for all the good wishes sent my way. While I am personally not a religious person, I believe a lot in “Intent”. I believe that once an intent is established, you’ll unconsciously work towards it. And for this I appreciate the intent set for me with all the good wishes. This is an acceptance speech after all – So I had to thank everyone that had a role, some of whom were kind beyond expectation.

BikeMS 150 – April 2019 – Kavitha Baratakke

Today, July 9 2019 is exactly 6 months post the date I got my stem cells returned to me. 6 months since I was told my immune system was equal to that of a newborn. So how am I today?

Well, today my immune system is that of a 6 month old’s. duh.  My recovery so far has been anti-climactic. But my enthusiasm for life everyday is waaaay more than it was pre-HSCT. At least that is a positive outcome of chemotherapy. I say that, simply because, I have the whole day planned out everyday. In fact I have tomorrow planned out before bed today. That level of enthusiasm might be overkill. But NO one’s telling me that. Yet.

I want to give an idea of my daily routine – Because guess what? For the first time in a very very long time, the things that I am doing are not for people-with-MS-only.

I drink “Yellow tea” as the first thing before any food in the morning. This is supposed to be anti-inflammatory, anti-oxidant and a whole bunch of other good stuff. I have read enough about it that I believe it. Yellow tea = HOT water + 1tsp turmeric + one pinch of black pepper.

This is next followed by “Amma lax”. This is actually my mother’s prescription for healthy digestion which we have dubbed as amma-lax (you know…mira-lax). In any case, it works. I can vouch for it. Amma-lax = Fenugreek and cumin , dry roasted separately and then mixed with Thriphala (Ayurvedic goodness). In all honesty though, this drink tastes HORRIBLE. So it probably works. Correct? In any event, when your mother hands it you, you drink it. No questions.

Eventually when I can bring myself to stop gagging, I make a porridge of Ground Millets. I know millet is cattle-food in America. But where I come from, it is considered a super food. Go figure. I do have to say though. It is tasty.

My doctor has prescribed Physical therapy. Actually I politely insisted that he write me this prescription. I am going crazy with the lack of physical improvements. So there is that at least twice a week. Some form of exercise is imperative for everyone, more so for people with MS and even more so after HSCT. Physical therapy is just one part of the cocktail for me. I am also going to Yoga classes 4-5 times a week. The thing about the type of Yoga I do (Iyengar Yoga) is that people of all abilities can do it. All poses can be modified with or without props. I am loving it.

There is more. Twice a week, I swim – okay I admit, I only walk in the water. But water has this amazing benefit that I do not need balance. Not needing balance is such freedom. It is amazing.

And last but not the least is MS Gym. I had mentioned this in an earlier post. And I still swear by it.

And oh yes, drink lots of water, Go for a walk when possible and sleep when possible. Sleep is probably the most important of everything I have mentioned here.

Does it sound like too many things? Maybe. Lets see how long I will ride this high.

Disclaimer: While physical activity is uber important, I still suck at most of it. All I am saying is that we should not ever stop moving.

The next step is a natural progression – I think. Fix the diet. For another post.