Great tools to use during the Pandemic

Some organizations have stepped up for pwp who have lost socialization, and usually exercise programs and support groups.  Even for those exercise programs that started up again, some pwp don't feel comfortable going out.

A sampling...

Here are a selection of services that are available now:

PMD Alliance (that's Parkinson's and Movement Disorder Alliance) has been stellar at providing live and recorded on-line programs, providing on-line support, and even helping support group leaders move their groups on-line.

https://www.pmdalliance.org/events-2020-summary/  Their on-line events

https://www.pmdalliance.org/covid-19/ Overview of what they're doing

https://www.pmdalliance.org/enewsletter-subscribe/  Get on their email list****  (So worth it!)

APDA (American Parkinson Disease Association) has many live and recorded events, exercise, dance, music therapy and more.

https://www.apdaparkinson.org/article/covid-19-overview-for-pd-community/ Weekly events

https://www.apdaparkinson.org/e-news-sign-up/ Get on their email list

Davis Phinney Foundation (publishers of Every Victory Counts) have many current exercise links, events, including biking (Davis Phinney is pro bicyclist) and webinars:

https://davisphinneyfoundation.org/live-well-parkinsons-online/ Resources during pandemic

https://davisphinneyfoundation.org/pf/live-well-today-webinars/#upcoming Webinars

https://davisphinneyfoundation.org/webinars/  Get on their email list (bottom of page)

Michael J. Fox Foundation has their monthly webinars

https://www.michaeljfox.org/webinars  Webinars

https://www.michaeljfox.org/ Get on their email list

Parkinson's Foundation has their webinars

https://www.parkinson.org/Living-with-Parkinsons/Resources-and-Support/PD-ExpertBriefings-Webinars Webinars

Ask your Rock Steady Boxing or other PD exercise program if they have a Zoom program.  Ask your local support group, too.  Contact information is at   https://www.pmdalliance.org/resources/   I cannot say enough about how useful PMD Alliance has become to our community.

PD Caregivers Survey

Make your voice heard! Help identify gaps in knowledge and support among Parkinson’s caregivers.

Caregivers are often spouses, partners, children, parents, friends or even neighbors. No matter their relationship to you, they are often at the frontlines of providing support and encouragement for their loved ones living with chronic conditions like Parkinson’s disease.

With the help of PMD Alliance and Davis Finney Foundation, Kyowa Kirin recently launched a survey to identify gaps in knowledge and support for Parkinson’s caregivers in the hopes of improving the resources available to patients and their caregivers.

If you or someone you know are providing care for a loved one with Parkinson’s disease, I highly encourage that you take the survey available here: https://bit.ly/2xCAwn1

                     Image: Pixabay

Finding basic information about Parkinson's Disease - Updated

If you live in the US, there is a terrific website with current information about Exercise and about Support Groups for each state. Parkinson & Movement Disorder Alliance has taken on the work of identifying each PD-specific Exercise group and Support group.  They even have information about local, regional, and national organizations. Try to Google this yourself, and you will appreciate just how much work this is.  Exercise groups will help improve your symptoms and may even slow progression - and can often become a support group, as well.  Support groups provide a place to ask questions, discover local resources, and get support - for the pwp and for the care-partner/family.

     https://www.pmdalliance.org/resources/

If you live outside the US, to find Parkinson's specific exercise, Google

     Parkinson's exercise your-geographical-area

To find Parkinson's specific support groups, Google

     Parkinson's support your-geographical-area

For a list of national/international Parkinson's organizations by world geographical area:

     https://www.worldpdcoalition.org/page/Partners

A really great book for pwp and their families/friends is Every Victory Counts.  Its focus is on how one can live well with PD.  There are contributions by pwp, families and care-partners, physical therapists, doctors, and more.  Included is information about diet, exercise, speech therapy, how to talk to your doctor, useful checklists, and much more. Best of all, it's free and downloadable online so that it's instantly available; a print version is often available, too.  I have both.  Kudos to the Davis Phinney Foundation for making this available and updating it regularly.

     https://www.davisphinneyfoundation.org/resources/every-victory-counts-2017/

Other information that may help:

     How to find info on research http://parkiesupport.blogspot.com/2019/09/where-to-find-latest-on-parkinsons.html

     Who are all these PD organizations?  http://parkiesupport.blogspot.com/2018/01/who-heck-are-all-these-organizations.html

     What to know when first diagnosed  http://parkiesupport.blogspot.com/2019/05/what-i-wish-i-had-known-being-first.html

Exercise that's different - the Theracycle

One of the earliest discoveries about PD was accidental.  A pwp rode a tandem bicycle with a doctor at Ragbrai, an annual cross-Iowa cycling event.  She was pedaling faster than she would have, because of her partner - and by the end of the week, many of her PD symptoms had improved markedly.  That experience grew into a whole series of experiments that demonstrated that when rats - and people - have to exercise faster than they ordinarily would, their PD symptoms improve (in the rats' case this was PD-like symptoms).

That Ragbrai experience on the tandem bike was forced exercise.

The Theracycle is reminiscent of a stationery bicycle, with important differences - it doesn't have a bike seat (and that's good, for there is very little comfortable about a bike seat), and it has a motor that enables you to pedal faster than you'd choose to pedal on your own.  You could use it as a stationery bike, but you can have it assist you to go faster - that's the forced exercise.

There are cheaper versions of the Theracycle, but they lack a critical safety feature - do you want the bike to keep pedaling when your feet are attached to the pedals - if you fall off the bike?  Me, neither.  The Theracycle has a "deadman" switch similar to treadmills; you pin it to your clothing so if you fall the cord pulls a magnet off its target and the machine stops.

We purchased a Theracycle used, almost new, for under $2,000, less than half the cost of new (which would be $4,800 for this model.)  My husband found it on Craigslist.

I gotta warn you - like a treadmill, it's boring.  My husband, bless him,  hooked up a tablet clamped to the right of the display, so I can watch Youtube.

For awhile I used the forced exercise aspect of the Theracycle, but it is a bit too energetic for my additional diagnosis (myelitis, which is similar to MS; see previous blog).  Now, I'm only allowed to do moderate exercise, not vigorous at all - and when I do vigorous exercise now I end of stiff (unable to move stiff), exhausted for 24-48 hours, and sorry.  This is frustrating since I became a real exercise nut before.

But I can stay on the Theracycle for long periods if I set the speed lower.  Possibly I can build up to a faster speed at some time in the future.  For now, I can work out at a lower speed but for quite awhile; typically I walk on the treadmill for 15 or 20 minutes, then use the Theracycle for 20-40 minutes more.  If I'm tired, I skip the treadmill and use just the Theracycle. Even at the slower rate my legs are stronger.

So the Theracycle has been a boon for both conditions.

Image from https://www.theracycle.com/forced-exercise-bikes-for-pd/theracycle-200/

Additional diagnosis - myelitis

Well, I've found out why my balance just kept getting worse, while most of the rest of my symptoms did not seem to be progressing, thanks to regular vigorous exercise.  Part (or all?) of my balance issues seem to be the result of myelitis.  A few years back, I had a nasty lupus flare - think itchy rash all over my body - and ever since, my balance has been slowly deteriorating.

Anyway, my Movement Disorder Specialist sent me for spinal MRIs - which showed some demyelination (loss of the "insulation" on nerves).  And more MRIs, including more current MRIs of the brain.  But no lesions in the brain; just the spinal cord.  While I waited to see even more of a specialist my balance continued to get worse.  I fell again, and started using a rollator outside the house, then another rollator inside the house.

So, lupus myelitis.  Myelitis is already rare, but caused by lupus is even more rare. Also myelitis, often called transverse myelitis, usually presents as sudden partial paralysis.  I had the initiating event - the lupus flare which damaged my spinal cord - without the paralysis (long may that continue).  So the treatments for the initial damage aren't available or appropriate.  What is available now is often used - a chemotherapy drug (rituximab) that suppresses the part of my immune system that has attacked my nervous system.

I've had the first two half-treatments and now wait for the next full treatment in six months. Treatment involves infusions (IV) that take 5-6 hours; I sleep through a lot of these hours.  The chair is a comfy recliner and they give me a blanket and some benadryl; how could I not sleep?

My balance does not seem to be worsening, which is good.  I'm not as stiff, and urinary retention is slowly improving (retention means it's hard to completely empty my bladder when I pee).  Baby steps, but I won't be satisfied until my balance improves and my fine-motor coordination improves, which might take months or years - or never.

                                                             ***

One problem with myelitis (very similar to MS, but in the spine, not the brain) is that vigorous exercise is out and heat/sweating can be a problem.  I had been having a tough time with exercise and with heat.  Either (exercise or heat) was starting to leave me so stiff that I could barely walk, and I was exhausted for the next 24-48 hours.

Cutting back on what has become a habit has been hard.  But if I don't overdo, I'm not as stiff and exhausted.  I'm back at Rock Steady, which is both exercise and support group, but doing the warm ups. balance work, and stretches; when the rest turn to boxing, I continue stretching.  I've tried but punching is out - too vigorous.

I still respond to L-dopa so do I officially have Parkinson's or not?  Which symptoms are from PD and which from TM?  And will I ever know?  Discussing with my Movement Disorder Specialist when I next see her.

Images from Pixabay.