[frances-lo]

Hi, Ally,

Yes, sometimes my Rock Steady friends go to lunch after class, but many people still work, so not as often as we’d like.

[frances-lo]

Hi, Ally,

Yes, there are times that going out can be anxiety-provoking – I need a rollator or I fall, but this (and the cane that I used before) were actually cues that I have a disability and need help.  People are great with doors now.  Before I’m pretty sure they thought I was drunk.  I’m glad to have enough energy to go out; I have long since stopped worrying about what strangers think.

But you also asked about social media.  I used it a lot at the beginning to find people like me.  Now that I go to Rock Steady Boxing, this has become my most important support group.  I still get info from the internet, but except for PD research group on Facebook – which is only about PD research – I read info from Davis Phinney Fndn, and other legit sources, and a few PD blogs.

I also have a condition similar to MS and I have to use social media for support because it’s quite rare.   The support community is much smaller than for PD, but just as welcoming and supportive.

[frances-lo]

@Lou  Oops typo.  400 mg.

[frances-lo]

@Lou Hevly,  I eat lots of all the foods you mention, but it wasn’t until I started taking a magnesium malate pill (200 mg, which I take with dinner) that I found relief.  If I forget to take the pill with dinner, I’m generally woken by my legs.  I’ve found that it doesn’t work very well if I take it at breakfast.  I need whatever sleep I can get, so I’m happy to take it with dinner.

I get that you’d prefer not to take still another pill – and diet may work for you.  I’m just telling you what worked for me.

[frances-lo]

I’ve been on generic Azilect for 3 years.  It improved stiffness and constipation, and I’ve had no side effects.  I’ll keep taking it.

[frances-lo]

I have balance issues so I use a rollator – all the time, including at PT, at Tai Chi, and at Rock Steady.  You can get seriously hurt by falling, and you could hurt somebody else.  I used a cane for a long time but it wasn’t enough.  The PT has given me some great exercises that improve my balance and core strength, so I can catch myself more often, but these exercises just aren’t enough either.

At Rock Steady, my balance has been too compromised to box safely standing up, so I sit down in front of a bag when we move beyond warmup and stretching (where I use my rollator).  You can still get a good workout, even sitting; coaches know how to modify exercises.

If you haven’t seen a rollator – 4 wheels, brakes, a seat.  The mini-exercise bikes I have tried have not worked well, but there are many cardio routines for people in a chair.

 

[frances-lo]

My mom, who also had PD, was on c/l for more than a decade before she had dyskinesias, and still had good symptom reduction.  Apparently they didn’t have amantadine then because she never took it.

I don’t think you should assume that you’ll have a few good years and your meds stop working.  First of all, they don’t stop working, and second of all, nobody knows what their personal timeline is.

Might be worth getting a second opinion just to have somebody else evaluate you for meds and discuss WHY that’s their recommendation.

[frances-lo]

Hi, I took Amantadine, a low dose, when I was taking Azilect but before I was taking Sinemet (c/l).  It improved my fine motor skills.  When we increased my dose, I started having hallucinations – little cartoon characters that I only saw in dim light, and not at all frightening, but hallucinations (which apparently one can get from just about any PD medication).  When I dropped the dose to the lower dose, the hallucinations went away.

I no longer take Amantadine (was trying to reduce all the drugs I take), but I miss the assist it gave my fine motor skills.  For the low dose, I took liquid, once a day, in the morning.   I’m actually thinking of taking it again, since my fine motor symptoms are slowly getting worse.

Hope this helps.

[frances-lo]

I haven’t used any velcro yet, but I stopped getting pants without pockets, because I want my phone with me and don’t want to hold in my hands.  Also, no more skinny jeans; I’ve actually lost weight, but it’s too awkward to try to get into pants that are tight.  Elastic waistbands are easier to get on, and off when I need to go to the bathroom.  I sit to dress, which is less fatiguing.

I also use nylon panties, not cotton, because they are easier to get pants over.  No more full-length skirts – too easy to trip over.  Haven’t found the perfect shoes yet, but I’ve replaced conventional laces with stretch laces so my shoes will slip on more easily.

I have to wear compression hose for orthostatic hypotension – but those are fortunately not for everyone with PD.

I’ve all but given up on earrings, and use velcro bands on my watch.  Oh, and I have an adult bib, which has made eating less messy; I have one for going out to dinner that looks like a scarf, but covers me to my knees when sitting.

Hope this gives you some ideas.

[frances-lo]

My mom and her brother both had PD, diagnosed in their 60’s, though there were earlier symptoms.  I was diagnosed in my 60’s, though I had symptoms at least 10 years previously.  Had my genes done, and don’t have the “usual” genes that are known to cause PD.  But I have other genes that increase the potential of PD.  But my mom’s parents lived into their 70s and 80s without PD (previous generations didn’t live that long).  Certainly there’s a genetic component for some of us, but I think it gets turned on by something in the environment.  Hard to look back on 50 or 60 years and know what that might be.