Busy day.

I had three medical appointments today, and I have to say I feel like I'm in the twilight zone.  Why? I hear you ask.  Well, I didn't have to wait more than five minutes to see any of them!  The other point to note is that none of them were bad, which is becoming more common as I grow in confidence and get on the front foot with my treatments.

I started out with my tremor doc.  A week ago I would have thought I had pretty much reached the end of the road in terms of what my stimulator was capable of.  I was wrong.  I had an adjustment and although the improvement was only minor, it was still an improvement.  So, I am now thinking how much more can I get out of this.  I guess that only time will tell.

While I was there we talked about stem cell transplantation and other drugs for CIDP.  It was good to get his feedback and opinion even if as I suspected he was not well versed on the subject.  His thoughts were that I was extremely knowledgeable about the subject and that any doctor would have to take my wishes into account.

After that I went and had a chat with my chemist.  I wanted to get her thoughts on rituximab, and we ended up chatting for about half an hour.  One problem that I overlooked about the drug was that it is insanely expensive.  About $3500 a treatment, and is not covered by the PBS.  So if I can't get on a trial, or get a pharmaceutical company or hospital to pay for it, it is probably not going to happen.

After that I had to run off to the mercy hospital to have a 'stealth' CT scan.  Stealth is basically a way that they can superimpose the images of the CT scan over the top of my old MRI scans from a year and a half ago to check the lead placements from my DBS surgery.  I had to question the relevance.  Seeing as everything is working really well, surely the leads are in a good spot?  Anyway, I had the scan, and I'm sure if something is wrong, they will call me.

Lastly, it was off to the physio for a bit of neck work, which felt great.  All in all I feel it was a good day for me from a medical point of view.  Until next time, stay well:)

Physio

I have seen a physio before. Every time I have a stiff neck or my muscles don't feel quite right, off I go. But this was different. The aim of the game was to improve simple tasks that I was now starting to find difficult. Such as walking.

So, what was the process? There were two main objectives, strength and balance. If both of these were improved, then tasks such as walking should be easier.

In the first session, the physio tested my muscle strength and identified muscle groups that were weak and needed work. They then gave me exercises that would strengthen those muscles.

They also tested my balance. This involved things like shutting my eyes and seeing how long I could stand still for, and pigeon stepping along an imaginary tight rope. Again, a series of exercises were developed so I could practice and improve.

During the process I did question the validity and the good that was being done, but I stayed the six week course and at the end the benefits were easy to see. Not only did I improve my results the first set of tests, I improved my walking and other skills.

So it has been worth it, and I thoroughly recommend it for anyone in a similar situation. Until next time, stay wellJ

My first day at rehab

So I sucked up my pride, told myself that what I was doing was good for me and off I went to Epworth rehabilitation hospital in Camberwell. Now, I have never been to a rehab facility before (as a patient or other) so I did not know what to expect, but my opinion was highly favourable.

I don't know if this was simply because the staff were really nice or it was genuinely a good facility, but I can't say for sure as I have no basis of comparison, but one thing for sure is that the staff were really great.

Before I arrived I had been given an outline of who I was going to see, and my first appointment was with the physio, a delightful, warm and caring person called Tiana. For this session we took some measurements of my strength and balance, and also discussed what I wished to achieve. From here she developed a plan for me for future visits. I will elaborate more in future posts.

After the physio I met with Delia, another delightful, warm and caring person who is an occupational therapist. We talked about what made my day to day living hard and what could be done to make it easier. We wrote a list of goals I wanted to achieve and from here she also developed a plan. I will also elaborate on this further in future posts.

Overall, my first experience with rehab was positive. I understood what the process was and what it was designed to achieve. More importantly, I didn't feel like an ability impaired person who was the pity of society. Until next time, stay well:)

Onwards and Upwards - Part 2

I had another first last week where I went to the rehab clinic for the first time. No, this wasn't the Betty Ford clinic or anything, this rehab clinic was mainly for the elderly, car accident victims, stroke victims etc.

The first person I talked to was the physiotherapist. This was mainly an assessment of my current capabilities. I did some strength tests (pushing against the physio in a certain direction) and some balance tests (stand on one leg and close your eyes). They also observed me walking. I must be quite a hard case for them as my capabilities change depending on the stimulator.

Next, I saw the occupational therapist. Again, this was an assessment of my current capabilities but this was less physical and more simple questioning, where she tried to figure out tasks that were difficult for me so we can develop strategies to make them easier.

The next step will be for the physio and the OT to develop a plan that will assist me in combating my balance issues and developing strategies to assist me in making everyday tasks easier. I will know more tomorrow when I go back for what is my first treatment. I'll let you all know how it goes.

Next time I'll talk about my final two doctors visits, which includes a really awesome stimulator adjustment setting. Until then, stay well:)