June Meeting this Week – Hope to See You There

Last Meeting until September.  Come join up for an actual support group meeting where the Guest Speaker is YOU!  Well, ALL OF US!  Bring your news and bring your questions. Also, we want to hear problems and possibilities with the portal.  Peggy, the guru, will try to answer questions.  Bring your device if you want.  I don’t know how good the wifi is there but we can try.

And please bring your calendar. If any of the summer activities are to happen, we need to set dates and get reservations as needed.

Don’t forget the Farmers Market on-site at 3pm.

 

 

Dear Fellow Members…Thanks for the Support

What I really enjoy about our group is that it truly is a “support ” group ready to share knowledge, information, ideas and tricks they’ve  learned along the way with each other.  its easy, over time, to become more of a speakers’ bureau but when ours leaned a bit too far in that direction, members chose to keep the “support” element strong.  So we are trying to find balance.

When any one of us havs questions, the membership really takes the time and attention  necessary to help.  Since our last meeting, a letter from a member asked about Rytary and possible side effects.  She thought she was experiencing something odd and was wondering if her new medicine was responsible.  Advice and answers follow :

Member 1:

I’ve been on Rytary approx. one month w/o any particular side effects except for dry mouth……..which is not at all worrisome! In fact its cured my “crocked toe” syndrome…….which was not only very annoying but at times a bit painful.
So………one might say its working well for me! Since it seems I’ll be on this drug for awhile……Now all I need to do it get the outrageous cost down from $100 a month…….a bit pricey but, I’m worth it!

Member 2:

I don’t know if you’d call this a side effect so much as a dosage issue, but there’s a wide variability on what Rytary actually does to me with any given dose. About half the time it works perfectly and is far superior to Sinemet, some of the time almost nothing happens and it’s like the pill has gone into a black hole, and some of the time I get some significant dyskinesia.

You can forward my email on to the questioner and tell her I’d be happy to talk to her further if that would help.

Member 3:

I found no side effects. I am still taking the Rytary.

Member 4:

Appointment with [my neurologist] today and I know trying Rytary again is going to come up. Any thoughts on your experience you’d care to Share? I’m mixed on it. Sinemet dosage is every 2.45 hours but I am overall doing well on it.
Member 5:

I have taken Rytary for a year or more. I’m OK with it. But it does take about 45 minutes to kick in.

Member 6:

This is an excellent question. You know I quit after a short, overdosed trial period. [my neurologist]wants to put me on Rytary next visit, in a week or so. I am leery due to past experience. He says, I will be at a much lower dose. So I am very interested in feedback from people who have been on it awhile. I know [a couple members] both said they felt better in a matter of days. [One] told me last meeting she has no side effects and it works well for her. [Another] ,is still adjusting to both frequent med changes and the disease itself. I haven’t asked in a while how you’re doing on Rytary.

Member 7:

And, yes, I have been on  Rytary for about a year but have only felt settled into it over the last 3 or 4 months.  When it works ,its great, but to me, its a bit inconsistent. On some days, I feel like it just doesn’t kick on at all..  I suspect its sensitive to my diet, schedule, and stress level.

I had an appointment with my neurologist this week so I posed a couple questions on this topic. I asked him,
” What kind of strange or unusual side effects do you see with people on Rytary?”  He replied that since it was the same medicine as Sinemet, just a different delivery system,  there were no unusual side effects.”  So I followed up with something I’d heard repeated, “But, isn’t it true that more women have trouble with it than men? No, he said, in fact he’s seen the opposite in his practice.

So, the member who first asked the question is grateful for your responses.  She feels that its unlikely  that Rytary is responsible for her latest complaint but will follow up with her neurologist .

And, finally, this: Sent along by one of our own,  a chance to help with some research on Rytary.
I’m on the Michael J F ox Foundation  Patient CouncilThe Foundation developed the survey below about Rytary and has asked us to forward to interested people and groups. I don’t know if you want to forward it on to the WWPD members, and there’s no expectation or pressure from me that you do. Just thought I’d give you the opportunity.

From the Michael J Fox Foundation, a chance to speak up.:

Have you been prescribed Rytary to help manage your Parkinson’s disease symptoms?  If so, you can help inform MJFF’s research funding, educational endeavors and public policy efforts.

Take our anonymous 10-minute survey about your experience and overall satisfaction with Rytary. The results of the survey will be used to better understand the benefits, side effects and any challenges associated with the drug.

TAKE THE SURVEY

Never heard of Rytary but want to know more? Visit our website to learn about this and other recently approved therapies to treat Parkinson’s disease symptoms.

My Friends, This One is for You!

Hey, all you group members out there, this post is dedicated to YOU!

When we first met, we were so happy to find that there were others out there facing some of the same challenges as ourselves.  We weren’t alone in the daily slog of tackling our Parkinson’s Disease.  To repeat one of my favorite comments, one of you walked in for your first time, looked around  and said, “How wonderful that there are so many of you”.  A moment  later, she spoke again, saying, ” But how depressing to see how many there are”.  Yes, it’s both so we have learned to accept what is.

We’ve had wonderful speakers – doctors, therapists, authors, nutritionists, alternative therapy specialists and more.  Between us, we exercise by swimming, yoga, tai chi, boxing,, walking, dancing and some I’m forgetting. Some have been inspired to try something new after hearing it discussed. We welcome new members and I think they feel it because not many have only come once. We’ve learned from each other in so many way and over time, this support group has become a welcoming group of friends.  We welcome new members  and I think they feel it because not many have only come once.

Lately, I’ve noticed a new trend.  Members are reaching out to each other for advice.  “Hey, does anyone know if this is a regular side effect?”, “Is anyone going to this event and want to share costs?, ” Can anyone give me a ride?” “What is your advice on this?  or that?”    Some of it is direct, some of it is channeled through me but either way, I feel the trust and sense of community growing in the group.  It feels GREAT!  So thanks to all the members and, if you’re not one but would like to be, just let us know.

NEXT MEETING IS WEDNESDAY, APRIL 6TH.  DON’T MISS IT.  SAME TIME, SAME LOCATION.

Dear Abby – Advice from the Membership: Starting on Rytary

Every so often  a member will ask to speak to anyone in the group who has experience with something they are going through.  Usually, I broadcast the question and then forward who they could contact.  Yesterday’s subject was put to us as this:

Opinions and advice requested on this Rytary question.  (Rytary is a new timed release version of carbidopa and levodopa ) The doctor wants to transfer member from Sinamet to Rytary.  No problem with the change but its the logistics she’s worried about.  Going on vacation this weekend and she knows that a lot of folks have a few rough days making the switch.  Should she go ahead and make the change to feel better or should she wait until after vacation to start the transition.  Let’s help her make a smart decision.  If you’re on Rytary, what would you do?

The responses we got were numerous and varied.  Before you read them,  remember this.  We are not a medical group.  We offer no medical advice.  No one should make decisions about their health based on anything written on this blog.  This is only a peer discussion.  And with those caveats stressed up front, here are our great opinions.

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I would definitely wait until she gets back from vacation.  As I have found … , we all respond.  It’s difficult to deal with when you’re trying to enjoy yourself.

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I was in the same boat.  At my appointment last week, we agreed that I should transition to Rytary.  I am also leaving this week for a month.  The doctor wants me to wait until I’m back home…to make the switch.  I tend to be very drug sensitive.

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Hi!  I started Rytary while on vacation and , although I went through an adjustment period, I actually found that the timing worked well precisely because I was NOT at work and not subject to stress or fatigue… I found the change to Rotary to cause only subtle changes (generally less dyskinesias and less off time) and, unless she’s going to be fencing or sky diving, I’d say go for it!

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I had no problem with the switch, as a matter of fact, I felt better in one day.  But everyone is different.

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Hi!  I had a real bad time for 2 weeks when I started.  If I had the choice I would wait until I came home from vacation.  I presume she’s okay with the Sinamet right now and wouldn’t take the chance..

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Definitely wait to start.  I had a good transition at first, then I got hit hard by dyskinesia.  Rytary is a fantastic drug but I would absolutely advise waiting until after vacation.  The added stress from travel might also make her symptoms worse temporarily and throw off her true reaction to Rytary.

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When I made the switch, I was okay by day 3 after a med change, but the first two days were rough .  Also, it might take more than one adjustment.  I would wait.

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I have been on Rytary since last fall.  I cannot even remember the transition.  Did anyone have any trouble with it?

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Good question.  I don’t take Rytary but I would not change meds ever before a vacation.  Whenever my doctor has wanted to change my meds and I am going away in a few days, she always tells me to wait until I come back. Unless it’s urgent, urgent (like completely intolerable symptoms) to change meds, I would definitely wait until return.

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I am not on Rytary yet, and not sure what I would do.  To start, I would ask my doctor about possible side effects and how long it takes to see positive results (on average).  It is difficult enough to keep to a schedule with meds and meals, even more so on vacation… I would read about the drug and talk with friends who take it, but realize we are all different and respond (or not) at our own pace.  Bottom line, I doubt I would start it  before a vacation…Unless I thought the results were going to make life better right away>  I hope this friend has a wonderful vacation and will share trip highlights with us at a meeting and the decision she made about Rytary.

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Would you like to share your advice or relate your experience?  Just click on “Leave a Reply” and share.  Thanks.

 

 

 

March (ing) and Other Steps to Good Health

 

After one of our periodic social lunches, we had a very worthwhile visit from physical therapist, Ellen Krasniak, Clinic Director of Physiotherapy Associates in Ashburn, Virginia. A member who had benefited from her services recommended the group invite her in. We’re so glad we did! Points she made:

Gait issues : A metronome (or metronome app) can help provide a steady beat to promote a better gait. Listening to music can help the same way. Tape on the floor to provide a “runway” effect can also provide a visual cue to help.

Freezing: Think of freezing as the lack of ability to initiate movement. Ellen suggests signing up and participating in the BIG program to learn how to build momentum to aid with freezing .

Balance and Falls: As we age, our balance gets worse due to compromised vision and the loss of force production in your hips. As your posture shifts, leaning forward makes balance harder and you’re more likely to fall.Ellen suggests doing the 
BIG exercises every day for the rest of your life. But even general exercises , particularly ones that work on your core and your strength. Tai Chi is a good activity to work on balance.

How much exercise do you need each day? The standard is 150 minutes/ week or about 30 minutes a day. Someone with Parkinson’s Disease and gait issues would benefit from this exercise pattern: 5-10 minutes of warm up, 25-30 minutes of focused walking (paying attention to step length and foot placement) and and then stretching (Hold each stretch for about 20 seconds). Strength training 2-3 times/week is very useful, too.

This is my favorite take away from Ellen: She was addressing a question of a member with bad feet and said that her clinic gets patients who have bad feet or fused feet. She called it a “salvage procedure”. Being someone with bad feet, I love the expression.

Some time was spent discussing the role of physical therapists in the long-term care of people with Parkinson’s Disease. She says its important to find a PT that you relate to and to keep them informed. That person should be considered a member of your care team. You should stay in touch with your PT and let them help you stay in the best physical shape possible.

At the mention of a care team, there were a lot of questions: Who should be on your care team, who should be your gateway doctor? Why have a gateway doctor? The long and short of it is that whichever doctor you have a good relationship with, who is willing to assume the role is a good candidate for being the gateway doctor. And why have one? It just helps to have one Doctor who is seeing the whole you and making sure the every day medical maintenance doesn’t get lost in the forest of chronic disease demands. Are you on a good Parkinson’s regimen? Is your thyroid medicine adjusted best for you , if that’s a problem? But when was your last pap smear, your bone density scan or your mammogram? Maybe a gateway doctor could help keep an eye on the everyday issues.

Ellen shared that her office is offering complimentary injury screenings and have a good number of neurological therapists. If you can’t go online and find her office, let me know and I’ll help.

See you all in April.  Wonderful speakers, Karl and Angela Robb, will be our guests.  There’s so much to learn from them.

The Gift that Keeps on Giving

Have you dug yourself out of the snow yet? Have you had enough winter? Well, we’re closer to spring every day and I’m really hoping for no more big snows this year. I mean,  it’s going to be 60 degrees on Monday!

Are you ready for another speaker? Trudy has asked her Physical Therapist if she’d come to speak. I know Joy spoke in the fall. I missed that meeting due to family obligations so I don’t know what ground she covered and/or what we’d still like to have a chance to ask a PT. We’ll talk about it on Wednesday.

Dr. Falconer and Dr. Rogers want to start circulating in the community again and Dr. Falconer would like to speak to our group because he enjoyed it last time. I’m not sure when they want to come, but we can discuss at the meeting whether we want a “just-us” meeting between speakers. I myself am curious to hear what he has to say after settling in to the new Practice.

Starting topic for the next meeting is Parkinson’s: The Gift that Keeps on Giving. Come share with us the odd symptoms you’ve discovered are related to PD. Sure, we can be inspirational and upbeat all we want, but first, let’s complain and laugh a little. This is the safest place for it.

If you borrowed a book at the last meeting, please don’t forget to return it. Feel free to take another one home.

 

PS:  If you live in the northern  Virginia area and just found this site, you are welcome to join our monthly meetings, held the first Wednesday of each month in Reston. Look for our contact information on the left side of the screen.

 

Priceless Time

What a great meeting we had today!  With no outside guest speaker, and the holidays behind us, it was time to keep the meeting members only with a freeform conversational flow.  Topics ranged from medications old and new as well as what is coming down the pike.  Some time was spent discussing the possibility of stem cells as an answer to Parkinson’s Disease.    This led to discussion of trials which tend to consist of small groups.  We are all anxious for word of trials which  show us a new step forward.

One of my favorite discussions was about secrecy..  Our group was started, stressing privacy.  Many of us hadn’t “come out” to employers, friends or even parents.  There were many reasons.  Some fear a loss of their jobs if the diagnosis was known, others worried about insurance.  Some  like me, told a few people and watched themselves become nothing other than the disease in some people’s eyes.  Whatever reason someone had, the upshot was that we don’t publicize when or where or meetings are or publish member names.

One of the members asked, “Why are we hiding?  We should be public with our disease and be role models for dealing with the disease.  And why not publicize our meetings so local community members can find us?” This led to quite a back and forth about whether or not or how much to share of our  personal medical history.  There was no final conclusion but a greater understanding of people’s thought processes made it worthwhile.  By the way, we do have open doors to affected women in the community and from our meeting site know that they can tell those women who and where we are.

Alternative therapies got some talk-time.  This group is fighting hard against their PD.  There are some using acupuncture,Reike, Tai Chi, yoga, massage – and some are very  interested in trying the QiGong we learned about last month. When detailed recommendations of particular services were given,  I sat aside the details to send in an email to the group.

We are trying out our idea of a lending library. I brought books that I’d found interesting to share with interested members.  Hopefully, other months will see other books come in to be lent out.  Books that went out this month include:

  • Parkinson’s Diva by Maria De Leon
  • The Peripatetic Guide to Parkinson’s Disease, multiple author/contributors
  • A Soft Voice in a Noisy World by Karl Robb
  • If I Can Climb Kilimanjaro. Why Can’t I Brush My Teeth by Nan Little
  • Brain  Storms  by John Palfreman

 

February’s meeting will also be speaker-free.  If there’s any new subject that we can learn from, I’ll try go get an appropriate speaker for March.  Let me know if you have an idea.