He has not been on any MS medication since last year and he had no disease progression. He was able to reduce his symptomatic drugs to half the amount that he was taking before treatment.
He still has continued issues with his legs, mainly spasticity and sometimes weakness. He is still using a walker and an good days a forearm crutch, and a scooter for longer distances.
After his 6 month checkup he moved back home to Truckee. After 3 month on his own he decided to come back to San Diego and take advantage of some help with daily living.
At the time he had weened him self off of Neurontin and Baclofen and was only taking Magnesium, Vitamin D3 and Acyclovir. But unfortunately this did not really work in his favor. He payed the price with increased pain and stiffness.
His legs would sometimes just lock up and he was not able to bend them in any way. He fell a couple of times, luckily he did not sustain any injuries.
He got very depressed and it was very hard on me too. You don't like to see your child suffer like that. Eventually he recognized that being off of any medication is not really the way to go at this point in his recovery process. He started to take Neurontin and Baclofen again and is doing much better ever since.
When he is getting depressed, he always has the feeling that this has been going on for ever and ever. I started to keep track on a day by day basis, evaluating his mood, activity level and social interactions with others and marked each good day with :) , bad day with :( and neutral day with :- on the calendar.
As it turn out the :( were few, mostly 2 days in a row, 3 at most! This really helped to stay positive and not get discouraged. He went to physical therapy twice a week and exercised at home when ever he was up to it.
All in all live after transplant is still not easy. It seems we are going one step forward and two steps back a week later. Of course, when he has a down day, you get worried and ask your self did the treatment not work for him? But then he bounces right back and you just know it did stop the disease, he is not getting worse, he is recovering!
Most people evaluate the success of a treatment on the fact if the disabled person can all of a sudden walk normal again. That would be a really big thing. But a person affected by many, many years of MS damage does not stand up and just walk normal again. It is a long and slow process and might not happen at all. But there are so many little positive things that happened since transplant.
His mind is sharp again, he pays attention to his surroundings, he is not sleeping all day and awake all night. He can go out into the sun and not melt instantly, he can read again and not have to hold his iPad 1/2 inch away from his nose. He is not constipated and does not have to take pills to go to the bathroom, he has an appetite and does not feel nauseous all the time. His eyes calmed down and are not spinning in circles, he can feel the floor under his feet and his hands are able to hold on to a knife or fork, lift up a glass.
A year and a half ago he was loosing all those capabilities at an alarming rate and nothing we tried stopped this from happening. It is easy to forget how bad things were at that point.
"It is what it is" as Nico likes to say. We are taking it one day at the time and just try to be happy that life is good!
Nico wrote something too for this blog:
Sept 30 2015
Ok, it's now been 1 year. The whole recovery process from HSCT has been a pretty challenging road !
In all my updates so far I've only mentioned the positive things that have been happening to me. I also want to bring up how difficult it has been at times.
There are so many ups and downs. I've experienced times where my symptoms are way better than other times, like my vision, walking, balance, energy, etc.
I have also had a couple of times where I got pretty depressed. I guess it's probably from feeling so uncertain about the final outcome of all these different feelings, and emotions I've been going through.
I'm also trying to get off the meds I've been taking for so many years! Baclofen and Gabapentin proving to be the hardest, having spasticity, and stiffness on and off. Maybe it's just to soon, or maybe I will need some meds for who knows how long.
I'm completely off Valium which feels pretty great ! The dream of being pill free someday continues. For now I plan on continuing taking 10 mg Lexapro daily, 10 mg Baclofen x 3 daily, and 300 mg gabapentin x 3 daily. That's 1/2 the amount I used to take, which seems to be enough to keep spasticity and stiffness at bay.
All in all my condition has definitely improved from pre-transplant till now, which is pretty great.
Oct 01
Today has been really good ! Up at a decent time (9:15am), feeling well rested and visited my sister, nieces, and nephew in Murrietta. Endured the heat really well, about 85 degrees and just felt really good.
Oct 02
Woke up 7:30am to go to the bathroom and walked really well! No balance issues, no grabbing on to anything on the way, felt really stable. Went back to bed, got up around 9:30am and things were already a little worse again. :( But other than that today was pretty good ! No heat issues, no nap, good energy !
Oct 03
Got up 9:30am well rested, which was good for a day of airport, and travel up to Reno and then home to Truckee. I had no problem finding the energy today ! It's nice to be home.
Oct 04
Today I was pretty beat and my body felt it, not much got accomplished. My legs felt pretty weak, had little spasticity, stiffness and tingling. Other than that I felt pretty good.
Oct 05
Today was good, thrashed over some pretty uneven trail in the woods.
Oct 8
Today was kind of ruff ! I woke up early, but not feeling very rested. My legs were really sore and I just stayed in bed.
Finally got out of bed sometime in the afternoon. Made it into the shower and ate some cereal. Did not have much of an appetite for the rest of the day, and my legs still don't feel so great.
Oct 10
It's been a good morning, woke up 8:00am well rested. Took a warm shower, prepared some food, made my bed, worked out and still have energy! My legs feel good so far, no spasticity or pain, no cramping. They just feel normal. :)
Oct 11
Today has been a good day, even climbed into the race car. I was not able to climb up in there any more before. Soon I feel some throttle therapy coming up! :D
