The mystery

  Had a followup appointment January 27. I stated that I would like to have less tremor in my right arm. We tried a few things and the team (4 doctors including Dr Jog) stated that this may be as good as it's going to get with DBS alone. They asked about how much levadopa I am taking (none) and that I may want to add that. We also discussed the use of botox. which would only last for three months and would be costly.

So we were left with Program 1, which was the 'old' settings saved last July, and Program 2, which was now slightly modified. The tremor was not as severe, and my walking was still better with P2 than P1.We left with me set to P2.

On the way home, I felt my right arm 'release' and the tremor stopped. This lasted for several days. Approximately on Friday this changed - I woke up with the tremor and tightness in my right arm much more severe. I switched to P1 and found the tremor much reduced and I could walk better than with P2.

We had expected that I would use P2 when I wanted to walk, and P1 when I wanted the tremor to stop. But now P1 is the 'go to' program and P2 is not being used.

DBS is still a mystery to me.

I can walk (mostly)

 This past Monday (July 29) I finally went to London with J for a DBS adjustment.

The doctor made some changes to the pulse frequency. Sometimes this process seems to be very much like getting new glasses - adjust, how's this?, go for a little walk, adjust again, ...... etc.

The best part though is that I am now walking most of the time without any aids.

A friend was keeping an eye out for a "Gazelle" exerciser as I still haven't pulled the elliptical out of the garage. The elliptical is very heavy, even after stripping it down. J and I have been trying the Gazelle out a bit and I managed to strain my back. It can really be easy to overdo it without me realizing it.

I'm excited and thankful and looking forward to getting in better shape and being able to walk more.

Settings update!

Had an adjustment to my settings yesterday. It was unscheduled. Received a call on Tuesday and set up the meeting for Wednesday. We are eager to get this done.

They switched the location being used on the right side and were able to reduce the current there. Left the meeting with settings of L 1.1 and R 1.6mA. A tiny bit of dyskinesia. It's amazing how a very small amount of current can make such a big difference in my brain. Discussed tapering down on meds but not with a "do this" clear strategy. So far, I haven't needed a pill and haven't taken anything for about 43 hours. Not sure yet if any kind of withdrawal symptoms will be an issue and will take a very small dose if that happens.

J and I went for lunch at Pita Pit and I had PROTEIN at lunch!! It's been many years since I was able to do that as protein interferes with the absorption of the PD meds. I felt "like a regular person".

I didn't sleep great. It was to be expected as the new settings need to settle in for a few days. But - when I am in bed, I can turn over, etc. fairly easily!

I'm moving around at home with no assistance. Just a little bit of balance issues, but no falls (or near falls).

We are so close!

PD Support Group

Last month, I was working outside and about 5 minutes before the meeting started noticed the time, realized that I still needed a shower and that there was no way I was going to make it. Grrrr.

Yesterday was our first meeting back here (thanks again COVID). J and I were discussing our current issues with good friends and noticed that the time was getting short so we dashed off to the meeting and were met with a full room. Yep - 5 minutes late.

I scanned the room for familiar faces but found none. It looks like there was no one left from 10 years ago. In this community, not a surprise.

The question of the day was “do you avoid situations now that you have Parkinsons?”

There was a lot of heartbreak in the room.

There was a man who was forced in to a horrible situation with his wife that he could not escape because of limited finances. I cannot even begin to describe it and could not bear it myself.

There was a woman who was having difficulty getting adequate treatment for tremors that she was very uncomfortable with.

There was a man who was told by his doctor that Sinemet was working for him when he does not feel any benefit. His daughter is his care partner and also does not notice any improvement from the medication.

There was a woman who was experiencing extreme pain.

There was me - Mr Chatterbox - who seemed to have a comment back for everyone (trying to be helpful). I just cannot shut up lately.

We ran a little over time, I was desperate to pee. I ran out of the meeting and when I returned the room was mostly empty.

Second round, meeting one over ……

UTI!!

 Ah ha, that's the culprit! Started on antibiotics Friday, feeling somewhat better today but more importantly - I can walk. I can get around! I can ....... Ya, that ......

Amazing how we are designed to do without so much (80% of dopamine receptors in your brain are gone by the time most people with PD are diagnosed), yet an infection that seems to cause some lower back pain and seems so far removed from your brain can mess you up so much.

Missed church this morning. Still have the lower back pain 😐😞

UTI?

I'm wondering .... J's mom always used to get quite loopy when she had a UTI. Could that be the problem? 

And why is it? ....

 that the font keeps changing in my posts?   😀