03/01/2024
It has been a little while since I've updated you all but I have some news.
Tracie has had numerous visits with physiatrists, neurologists, and our family doctor as well as many nurses and diagnosticians in the last little while.
Tracie's hip surgery is healing up nicely and her staples have been removed by nurse Kelly who is lovely with Tracie and very professional. Tracie's mental well-being was pretty lousy when she was in hospital and it has improved by leaps and bounds since being home.
Her arm and grip strength is way better and she is initiating her own physical therapy without any prompting which is why I know her mood is improved. Hospitals are really depressing despite the wonderful professionals there.
The neurologist looked into Botulinum Toxin injections and is still looking for people willing to treat Tracie however most are either incredibly risk-averse due to being unfamiliar with SPS or are simply overbooked so there is a lot of frustration there.
Tracie has also been booked for a visit to an Intrathecal Baclofen Pump clinic in Toronto however this poses a great deal of challenge to us. Firstly, the drive is about 5 hours each way, even for the initial 2-hour consult so the trip would be 12 hours minimum and although Tracie is brave, that's a lot to ask from someone who has constant spasms.
If she IS a candidate for such a pump surgically installed in her spine, she would need to attend multiple times for an all-day test one time, and then the surgery, then back again in a week for a calibration of the pump, and then if all goes well, it would mean she would need to continually re-fill her pump reservoir with the drug which is not cheap and is not currently covered by anything...and is certainly out of plan of her private insurance. Funding would have to be sought - perhaps under the Trillium Drug plan.
Then there is the issue of there not being any facility near us to re-fill the reservoir every 2-4 months. That means that we would have to drive the "She-Hulk/M.A.S.H." van to Toronto which would be incredibly expensive in gas, to say nothing of hotel fees etc.
It is incredibly frustrating to know that there is a treatment that Toronto offers but Ottawa does not and people have to make continuous pilgrimages to Toronto in order to maintain their necessary treatments at their sole cost.
We will be attending the consult in early May and we hope they can determine the best way forward but my heart is heavy because I don't know how we will be able to afford or arrange such a logistical feat.
On the bright side, Tracie visited a physiatrist today for a consult, and to our surprise, a treatment! He injected her left knee with a numbing agent followed by cortisone and Tracie immediately felt an improvement in her knee pain, and more importantly, she has not had a leg spasm in that leg since 2 pm today (it's now 7 pm).
The neurologist is guardedly optimistic and his theory is that by removing the inflammation in Tracie's very messed up knee, it took away a trigger for her GABA-deprived brain to start sending out spasm signals. If so then we have learned that Tracie's disease isn't just SPS but also arthritis and weather-related neuritis which combined with her Stiff Person issue, creates a perfect storm of suffering. By breaking this cycle, we may have figured something out.
I cannot tell you how hopeful I am about this, although guardedly so. Every night this week, Tracie has woken me up with continuous requests to re-position her electric massager on a different area of her foot. (We had previously discovered that continuous stimulation of her foot with massage could stop/reduce the severity of her spasms)
To say that I have been pushed to my limits is an understatement. The massager's effectiveness was waning amid the severe weather changes and this cortisone injection could not have come at a better time. I'm told that the effects can last up to three months and if that comes to pass, it will be welcome relief for Tracie (and her husband at 4am in the morning).
The physiatrist is also investigating possible nerve-deadening techniques in order to further impede the trigger effect of pain on Tracie's nervous system and although it's doubtful that Tracie will ever walk or even bear weight on her legs in the future, we are hopeful that she will be able to have measurable improvement and be able to rejoin the world in a meaningful way.
I will confess that at this time, your financial assistance would be helpful, if nothing else but to help defray the cost of our upcoming trips to doctors, some here and some in Toronto. If you can help, please do. If not, then that's totally fine but at least spread the word about Tracie's challenge.
I'm so proud of Tracie. She is gearing up for a return to work and she is working hard at building up her strength and vitality. We are still administering SCIG infusions and are nearly ready to start chemo-therapy in order to put the autoimmune aspects of the disease into remission (hopefully). It will probably mean that Tracie will lose her hair and there is a real risk of cancer among other things however at this point, we are willing to risk it to beat this sadistic demon of a disease.
Neither Tracie or I picked this fight but by God we are going to fight it and whatever happens, SPS will know it has been in a fight.
Thanks for listening to my rant.
Love you all.
My name is Jamie Labonte. I'm the husband and cheerleader for Tracie Taylor. … Jamie Labonte needs your support for Help Tracie Fight Stiff Person Syndrome
