Sunshine 2's Keep On Moving thread - August 2022

[agate]

This thread was Sunshine 2's idea, and in her absence I'm continuing it. This was the post she was using to start out:

MS creates some real challenges to keep on moving. It helps to inspire each other on how to find ways to move.

Did you stretch in your bed, swing your arms, roll side to side today? Or perhaps you did housework? Or exercised in a pool? Tracked your count of steps? Chased your cat around the home? Pushed the wheelchair wheels with your arms at the store? Post them here and we can support and egg each other on.

REMEMBER: this is a keep on moving thread, not keep on exercising! Any moving is important it doesn't have to be exercise! Even Science proves that.

Carrying over Virginia's question to Howie from the July thread because he must have missed it:

Howie, a couple of years ago when the pandemic was so bad it was my dryer that went out. I tried for hours with both Home Depot and Lowes to get a new one, but it was during the period where you couldn't get any kind of appliance. I finally called a man who worked on appliances. He came and changed the fuse. It was a 10 minute job. That's the dryer I am using now. (knock on wood). Do you think calling a repairman is a possibility for you.

[Sunshine 2]

Hello BTers!!! I am still hanging around.

These days I am 100% in a wheelchair.

[agate]

Good to know you're still here, Sunshine!

Can you transfer? That seems to be a big question that gets asked when our legs have gone bad on us.

[Sunshine 2]

Yes I can transfer.

in a couple of weeks I see my Neuro. I also work with someone in a Pain Management clinic. There are some new ideas that I am hoping give me some relief.

How is it that I could have Stiff Person Syndrome when only 335 people in USA have it?!! I only know one other person who has SPS cuz I met him at the infusion center. He is much worse off than I am. My spasms are only from the waist down. His are up to his throat.

If you google Stiff Person Syndrome, you might get a better picture of the disorder.

Many of the symptoms are so similar to MS. In fact, for years, my Neuro thought I had MS ... But now he knows all along it was really SPS

[agate]

The neuro hasn't considered the idea that it might be both SPS and MS? Didn't you have telltale lesions showing up on an MRI?

This is an ugly idea and I'm hating myself for mentioning it. Who wants TWO neurological disorders? Years ago wasn't there someone here with both myasthenia gravis and MS? And the writer Joan Didion is said to have died of Parkinson's disease but all along she seems to have had MS. Maybe she had both?

[Sunshine 2]

All along Neuro said it was "Probable MS". the MRI's would only show lesions but they would come and go.

[Sunshine 2]

agate: all along my Neuro said it was only "Probable MS". I did have lesions that showed up on the MRI. But the lesions would come and then they would go. The word "Probable" was because it never quite fit in the criteria to diagnosed as MS.

There is plenty of evidence now that it has been and is now, Stiff Person Syndrome all along.

[agate]

It's nice of you to stick around here even though you've moved to a different category! There's no rule here that I know of that says that people without definite MS can't take part and we've certainly had people here who have an interest in MS for some reason or other even though they themselves don't have it. Right now there is Cat Dancer's Tom Cat, and we've also had Rose (Earth Mother 2 Angels), and in the past there have been others. So I hope you won't drop out of sight. Of course if you don't feel up to posting, everyone here can understand that.

[Virginia]

Sunshine, I am so glad to see you again. I truly hope you get some kind of good news from your Neurologist when you see him. Have you been going to a pain management clinic for long? Do you think it helps?

Only 335 persons in the U.S.!! I wish it could have stopped at 334 and left you out.

You are so much missed here on the forum, but we certainly still consider you as an important part of our group.

With so few people having SPS it is really a coincidence that you met someone in the infusion center who has it.

I hope you will be able to come back and let us know how the pain management is working.

Remember, we miss you.

[agate]

Sunshine, maybe the person you met at the infusion center would like to join your SPS section here at BT?

[agate]

I finally realized why so few people have been saying anything lately. It's all because I haven't yet posted my July average step counts! Everyone has been waiting. Sorry to keep all of you in suspense for so long!

(Drum roll please)

AVERAGE STEPS FOR JULY (based on 22 days): 1,903

[Virginia]

Good Grief - The woman healed herself!!! Agate, I now consider you no longer have MS.

[agate]

To be able to say some magic words and there would be no more MS would be nice.

[Virginia]

I just read in medpage that a new spinal cord stimulating system (Proclaim Plus) has been approved by the FDA for use in treating pain in multiple parts of the body at the same time. Abbott Laboratories reported

I don't know if this is something Sunshine could ask about. Since it has just been approved I don't know how quickly it will be made available to the public.

[agate]

Something about ProclaimPlus here but we don't find out just what is involved in setting this up:

Only registered and activated users can see links., Click Here To Register...

[Sunshine 2]

This looks promising. I will first run it by DH since he was in the medical field.