- Mon Aug 06, 2018 8:02 pm
Hi, my family call me fred, but my real name is Bill. I'm nearly 96, and started the OT journey in Oct 2015.
My Son, has joined me to this forum due to the frustration of not finding others with OT, and the trouble I've had explaining the symptoms to others when having other related/non-related medical events happen in my life.
The last time I drove a car was the day my legs went wobbly, and I found myself unsteady when at a shopping centre near home. That day began a series of explorations into what was the problem. With specialists introduced by my local Doctor (GP),
- we explored Ears, note throat thinking there might have been a head dizziness situation, ruled that out.
- then it was exploration into vertigo, another potential reason for losing balance, or in my case, more a 'fear of losing balance'.
- during the 12 - 18 months that followed, I became dependent on walking on a stick.
- this progressed to a dependency on using a wheelie walker to get around the house
I feared I was suffering Parkinsons, because coincidentally at the time, my voice began to weaken and crakle, and the two symptoms of wobbly legs and the voice, mixed with my close relationship of many mates who had fallen to Parkinsons, prompted me to do too much Googling into what might be. My Son is writing this and probably coloring the thoughts here a little, because fair to say, I became more anxious and had convinced my self that was the path I was heading: Parkinsons.
- But then we got a chance to visit a neurologist specialist, and his technician and did a heap of tests. We finally had a definition of the problem. I had O.T. And the same symptom of wobbly legs, was OT and not Parkinsons because of the rate of the tremor.
- I still felt I was being conned. It took another three visits of pretty heavy argument and convincing, to get me to comprehend the difference between Parkinsons and OT.
Move forward to 6 months ago, East 2018, and my mobility had worsened, and I've become dependent on a terrific electric chair: PRIDE GoChair. It has given me new found freedom to get from bed to bathroom, to kitchen or TV or to my pianos or computer, to see what's going on.
Then in recent weeks, I caught pneumonia, and attended private hospital followed by a three week stay in Rahabilitation. My energy levels dropped, and I felt new symptoms of OT were getting to me.
So we visited the original Neurologist to once and for all seek clarification of what other symptoms come from OT. And he stated that the tremor in the legs is a solitary symptom and cause of OT as we all define it, and there are no other related symptoms. Therefore, the new found weakness must be something else.
But I've spent the last couple of years, believing there might be other factors that will impede me. And due to privacy laws and so forth, I've been deprived of discovering if there are other people around the world with OT and what their path has been.
So with OT comes anxiety, and with anxiety comes new medical matters to deal with, so there is a snowball effect here, particularly if there is a level of anxiety in life to begin with. SO it becomes a challenge to separate the cause/effect of things and for the GP to provide the right drugs to ensure
- a good nights sleep
- to enable a next day ability to get up and do any sort of physio (at 95!)
- and therefore maintain a healthy diet and appetite.
AS for drugs for OT, there were three available in Australia. The first one knocked my socks off in a couple of days and was immediately stopped. Then the 2nd was to try Gabapentin for 3 months. This started at 1 then 2 then 3 daily, and then to 6 daily. I tried it for 5 months with no impact. Others might say that continued use of it might have extended the combatting of the OT - who knows. There was a third experimental drug, but with none of the priors working, that was skipped.
Doing a search for "Melbourne" on this forum, and with respect, skipping those in Melbourne Florida, and focusing on those in Melbourne Australia, I'd love the chance to compare notes on OT in case there are doctors, services or people who can help, that are close to my home.
Thankyou for sharing my journey in OT.