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?   😀

Session 3 - some relief

We finally got a call back from the London Hospital. The doctor not only confirmed some of my thoughts - specifically that we need to treat each side individually and that the left side needs to follow the right instead of keeping pace, but also prescribed Sinemet CR (controlled release) for use overnight.

It may not be ready at the pharmacy today. Hoping it doesn't take too long to come in.

In the meantime awesome friends are offering some relief from the heat and the stress this evening.

We are blessed.

Why does my life seem to be; I complain, God provides, I wonder if God will, God does. He is always faithful!

Take, take, take

 Sometimes Parkinson's seems like it just takes and takes and takes.....

What it gives back is humility. I can no longer do it all. Why I ever thought I could is a QUESTION FOR ANOTHER DAY.

Session 3 - what 1.5mA on both sides does to me

Hi B,

We are doing well. DBS - is being a bit of a pain. Ok, more than a bit. In concept the surgery is fantastic. It's just harder to dial in the settings than we expected. I was diagnosed with PD in the Spring of 09, but these past few days have been the worst symptoms and/or side effects that I have (that we have - as Judi has had to help me more than ever) ever had. It runs from extreme tremors, lack of strength, inability to move - especially overnight, to vivid dreams where I yell and act out.

We have contacted the hospital but have not heard back yet. I am working on some theories within the constraints of what I am "allowed" to do with DBS settings, and that is a whole 'nother story about my thoughts on health care.

Thank you for all your prayers and support. We have HOPE (in God's plan) and hope (in the DBS technology) and know that we will get "there".

I have some fundamental disagreements with how my settings are being updated and I am seeking answers from other experts. And I really want to explain that, by experts I mean other PD patients who have had DBS.