I have finally got a letter telling me when my appointment to see the Neurosurgeon is! I think it is just going to a consultation, and not the actual testing, but still, progress! So that will be in February next year, so hopefully the ball will start to roll quickly after that.
In other news, I went to Manchester yesterday to hang out with a friend. It was a very fun day, and to sum it up, Manchester gets a seal of approval for wheelchair friendliness! There was one "ah crap" moment, when we got to Weatherspoons, as we were confronted with steps leading up to the door. My friend went in to ask if there was a wheelchair accessible entry, and got quite confused as she saw a disabled toilet!
In the end it was all good, and there was an entrance around the back from another street.
So German Market brandy punch + relatively flat streets + bonding over nom noms = good times!
Saturday 4 December 2010
Monday 8 November 2010
Update
So I had my 6 monthly visit to my neurologist, just to check up on things and to make sure we both knew what was going on (I am losing count on the different doctors I have seen over the last 6 months!). He said he would check that my referral to be admitted to hospital for dosage testing hadn't been lost in the hospital system, and to try and hurry it up if possible.
He was also very surprised that the wheelchair services* said that they couldn't assess me for a wheelchair because they thought I didn't need one! He said "But...you DO need a wheelchair?!" *confused look*
He said he would right a strong supporting letter to wheelchair services for me, so hopefully that might sort things out.
In other news, final year at Uni is MANIC. The good news is that I have now moved into a new flat, with NO steps down to the bathroom! The bedroom is massive as well, and there is somewhere to eat! We do not have a sofa any more though...
*I will make a post of my experience with wheelchair services another time, but needless to say, it was not forthcoming.
He was also very surprised that the wheelchair services* said that they couldn't assess me for a wheelchair because they thought I didn't need one! He said "But...you DO need a wheelchair?!" *confused look*
He said he would right a strong supporting letter to wheelchair services for me, so hopefully that might sort things out.
In other news, final year at Uni is MANIC. The good news is that I have now moved into a new flat, with NO steps down to the bathroom! The bedroom is massive as well, and there is somewhere to eat! We do not have a sofa any more though...
*I will make a post of my experience with wheelchair services another time, but needless to say, it was not forthcoming.
Wednesday 27 October 2010
Insert witty title here
As I type this I am watching a Wife Swap episode, in which one of the wives is in a wheelchair - this should be interesting, so apologies if this post is intercepted with commentary on the episode!
One of the daughters just commented that she wanted someone that she could get angry at, but would feel guilty about getting angry at the swapped wife as she was in a wheelchair. Hmmmm. People's thoughts on this?
Anyways, in my last post I explained what the Baclofen pump is. I am currently waiting for an appointment to be admitted for a trial, so they can figure out the right dose for me before implanting it, and I finally got my letter yesterday from my consultant saying the Neurosurgeon had been contacted to arrange a date, woo!
It is a long process getting it, only after it was fairly obvious that oral medication disagreed with me that I finally decided to be referred to get it, as it is kind of a last resort, and a sort of extreme one.
The decision go ahead with the process had to take into account that whilst the sleepy/grouchy/drunky side effects wouldn't happen, because it relaxes the muscles, the stiffness that I rely on to stand up/stagger about would be taken away completely, so most likely this means I will go from part-time wheelchair use to pretty much full time.
The Dr told me to think hard about it, but I was totally cool with this, so said ja, go ahead and refer me. I feel way more elegant and less clumsy in a wheelchair than when I am hobbling and staggering about! Plus putting trousers and shoes on will be waaaay easier, as it is a mission in the morning to get them on when your legs clamp together!
So now is the waiting game for the trial appointment - in the mean time this blog will mostly serve as an every day blog till then.
One of the daughters just commented that she wanted someone that she could get angry at, but would feel guilty about getting angry at the swapped wife as she was in a wheelchair. Hmmmm. People's thoughts on this?
Anyways, in my last post I explained what the Baclofen pump is. I am currently waiting for an appointment to be admitted for a trial, so they can figure out the right dose for me before implanting it, and I finally got my letter yesterday from my consultant saying the Neurosurgeon had been contacted to arrange a date, woo!
It is a long process getting it, only after it was fairly obvious that oral medication disagreed with me that I finally decided to be referred to get it, as it is kind of a last resort, and a sort of extreme one.
The decision go ahead with the process had to take into account that whilst the sleepy/grouchy/drunky side effects wouldn't happen, because it relaxes the muscles, the stiffness that I rely on to stand up/stagger about would be taken away completely, so most likely this means I will go from part-time wheelchair use to pretty much full time.
The Dr told me to think hard about it, but I was totally cool with this, so said ja, go ahead and refer me. I feel way more elegant and less clumsy in a wheelchair than when I am hobbling and staggering about! Plus putting trousers and shoes on will be waaaay easier, as it is a mission in the morning to get them on when your legs clamp together!
So now is the waiting game for the trial appointment - in the mean time this blog will mostly serve as an every day blog till then.
The Baclofen Pump
Basically, Baclofen is a drug that helps reduce spasticity which occurs in neurological illnesses, and spinal cord injuries. To explain it really simply, the drug helps relax the muscles and stops them from twitching crazily as much! I'm not too up on the science behind it, apart from that it helps the electrical signals to the brain, go from hyperactive to normal.
Baclofen comes in tablet and and liquid medication form, but the problem with that is, it can have some REALLY interesting side effects. That is, acting like a drunken incoherent form in my case, so probably going to work in that state was probaaablyyy not the best idea!
Work colleague: Sanchia, are you ok?
Me: I'm Medicated! *Giggles*
The Baclofen pump gets around this problem by going to the source, by pumping the medication directly into the spinal fluid, so therefore doesn't have to go through the bloodstream and you don't act like a crazy drunk person:
The pump is refilled via am injection through the skin at the site of the pump, usually every 1-3 months, with the battery lasting 5-7 years.
So that's an simplified explanation of what the Baclofen pump is!
Image taken from:
Baclofen comes in tablet and and liquid medication form, but the problem with that is, it can have some REALLY interesting side effects. That is, acting like a drunken incoherent form in my case, so probably going to work in that state was probaaablyyy not the best idea!
Work colleague: Sanchia, are you ok?
Me: I'm Medicated! *Giggles*
The Baclofen pump gets around this problem by going to the source, by pumping the medication directly into the spinal fluid, so therefore doesn't have to go through the bloodstream and you don't act like a crazy drunk person:
The pump is refilled via am injection through the skin at the site of the pump, usually every 1-3 months, with the battery lasting 5-7 years.
So that's an simplified explanation of what the Baclofen pump is!
Image taken from:
Wednesday 22 September 2010
Hello!
I have been wanting to do something like this for a while, but finally sat down and actually got started!
Basically this blog will track my progress on the way to acquiring a Baclofen Pump (my next post will explain what this is in more depth), which is an implant that pumps drugs directly into your spinal fluid.
I thought I would do a blog on it, as when I was doing research into the pump, I found it hard to find any blogs or information detailing the process from the patient's point of view! Any I have found though, I will link on this page. In addition to the pump, I will post about things I come across and experience, from shopping to travelling!
Basically this blog will track my progress on the way to acquiring a Baclofen Pump (my next post will explain what this is in more depth), which is an implant that pumps drugs directly into your spinal fluid.
I thought I would do a blog on it, as when I was doing research into the pump, I found it hard to find any blogs or information detailing the process from the patient's point of view! Any I have found though, I will link on this page. In addition to the pump, I will post about things I come across and experience, from shopping to travelling!
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