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.

 

 

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A Rockin’ Good Time

Our April visit with Karl and Angela Robb was  a wonderful blend of experience, education, conversation and laughter.  Our speakers brought a lot to the table.  Karl. author of the well-loved book, “A Soft Voice in a Noisy World”, was diagnosed when he was in his early 20’s, twenty years ago!  He’s been down that long road for diagnosis, especially when doctors aren’t looking for Parkinson’s Disease in a patient in their twenties.  He also has struggled with the pharmaceutical options and was very enlightening.  He has tried and/or uses many alternative treatments.  The main alternative that works for him is Reiki.According to the Reiki International Center,

Reiki is a Japanese technique for stress reduction and relaxation that also promotes healing. It is administered by “laying on hands” and is based on the idea that an unseen “life force energy” flows through us and is what causes us to be alive. If one’s “life force energy” is low, then we are more likely to get sick or feel stress, and if it is high, we are more capable of being happy and healthy.

Both Karl and his wife, Angela,are  Reiki Masters. They  have been facilitators for the Fairfax City Support  Group.  and she is  and has been a longtime care-partner for Karl.  She knows well what both sides of the life mean and shares it with joy and laughter.

The rocking’ start I mentioned had to do with the question, “What are we to expect from our neurologist’s practices?”  I think this may be an on-going subject .  We discussed what a first appointment should look like, how often and for how long an appointment should be. Of course, these specialists are in short supply. Anecdotes were also shared of office staff issues.  But for the most part, people living with  PD would be satisfied with a practice that was flexible enough to see a patient has a serious concern, and who has a staff that is both professional and kind.  We are blessed to have quality doctors in our area, but sometimes a  doctor may  too busy to notice when a patient needs more time or more frequent visits. .  It’s a shame because we really rely on our neurologists to help  us as we stumble down this path.

 

Maybe there can be some follow-up at out next meeting , when we’re joined by a couple of our talented doctors.

 

 

 

 

 

 

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.

 

 

 

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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Looking Back and Looking Ahead

Our December meeting was a great fit for the season.  Ann Duvall (bio here), was our guest educator on the subject of Qigong.  We moved the meeting to a larger space in our meeting facility to have room to stretch and learn some of the movements.  Ann began by describing her personal path that led her to learn, practice and eventually teach the ancient art of healing, involving movement, deep breathing and meditation.  We spent an hour or so learning about Qigong and practicing it and everyone felt very relaxed and mellow by the end.

Whether you attended or not, you can see some of what we did at the following link to this video provided by Ms. Duvall, “Gathering qi from the universe”.

She also provided another link to a Spirituality and Health Magazine  article.  The difference from when we did it is the additional step “patting” (swiping motion ) towards the Earth at the end.

Finally, Ann sent me a “crib sheet” on the Grief Release” Qigong movements she took us through and has given me permission to send that information to any member who requests it.

ON ANOTHER NOTE, at the last meeting, we also discussed speakers at the December meeting  –  the quality and the quantity, what we get from them and what they cost us.  The upshot of the discussion was that the speakers have tended to be very educational and varied widely on subject.  The problem is that we are a support group not a lecture series and by definition, we need to have time to relate to one another, to share our experiences and our frustrations, to connect  on a personal level and, occasionally share a joke or two.  Based on that, we will try to have speakers at most every other month.  If we get offers too good to pass up, we will try to keep the first half-hour of the meeting time reserved for member contact/update.

OUR NEXT MEETING is January 6th, 2016.  Our guest speaker is YOU so mark the date and try to join us.  Just in case our winter actually arrives, please note our Weather Cancellation  Guidelines page from the first page of the site.  Note that we are more conservative than the schools and our facility. If they are closed, the meeting will be cancelled. But even if they’re open, look for a call, email or post that will verify  our status.

On a personal note, this fall has been one of the most challenging I’ve ever faced.  As someone who tries to not be any trouble for people, this time I fought that instinct  and said ‘yes’ to any or all offers made:  The blessings heaped on us because of that decision provided us with 12 people who waited with me through my husband’s surgery, 11 wonderful cooks provide us with meals including some of the best chicken noodle soup and salmon we’ve every enjoyed, at least 10 of my spouses co-workers came by after work to check on and visit him, 9 people dropped by with puzzles, movies, books and a Nerf gun (!) to help him stay amused, 8 friends offered to run errands and mostly were used, at least 7 kind folks became pen-pals or frequent callers to check on him and on me, 6 of the best doctors made sure my husband would have a successful recovery, 5 close friends of his dropped by to visit with him after their long-standing Saturday sport reservation, 4 of the most wonderful children ever mowed the grass, cleaned the garage, brought us food, let  me be a houseguest, 3 of my siblings were there for us regardless of category,my 2 best friends did everything that I didn’t know needed to be done …everything BUT a partridge in a pear tree.  In this season of giving, remember to say yes  and allow others to help.  It’s a blessing all around.

The best to you and yours through this holiday season!