I have PD (Parkinson Disease)

Posted by Chris J @chrisj2491, Feb 13, 2015

I would like to introduce myself. My name is Chris and I just joined the group.
I have PD (Parkinson Disease) which of course is a neurological disorder.
If there’s one thing I’ve learned. ….it’s that everyone is “different.” It’s always good to listen and learn about others’ experiences.

@denie57

Hi everyone! Well wishes and hoping everyone is fighting the good fight. I haven’t been on the site in awhile. Managing work, family, home and the disease is a lot for me. I am having a lot of pain right now and feeling a bit unsteady. Kind of funny….just last week I was on vacation for a week and felt really good. I’m trying to hang in there and work as long as I can. Does anyone know anything about the drug Selegiline (ELDEPRYL)? It was prescribed for me about 3 months ago. I complained about the stiffness and pain I was experiencing. I wasn’t all in so I am not taking it. Side effects concerned me. I’m afraid of too much medication too soon. I am taking the standard medication Carb/Levo 25-100 and have been on for 6-7 months.

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Here’s the video of Michael J Fox skating http://www.oprah.com/health/michael-j-fox-goes-ice-skating-with-dr-oz-video

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@denie57

Hi everyone! Well wishes and hoping everyone is fighting the good fight. I haven’t been on the site in awhile. Managing work, family, home and the disease is a lot for me. I am having a lot of pain right now and feeling a bit unsteady. Kind of funny….just last week I was on vacation for a week and felt really good. I’m trying to hang in there and work as long as I can. Does anyone know anything about the drug Selegiline (ELDEPRYL)? It was prescribed for me about 3 months ago. I complained about the stiffness and pain I was experiencing. I wasn’t all in so I am not taking it. Side effects concerned me. I’m afraid of too much medication too soon. I am taking the standard medication Carb/Levo 25-100 and have been on for 6-7 months.

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@colleenyoung Thanks for finding that clip, Colleen. It was great seeing that again!

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Hi @trouble43443 @ggopher @caryp43 @hopeful33250 @burgle @denie57 and @aperob. Checking in.

– @trouble43443 – How is your support group going? How was the speaker from the National Parkinson’s Foundation – MN Chapter?
@ggopher and @burgle are you taking Azilect? How are you doing with food interactions if any?
@denie57 Are you still exercising?
@aperob How are the balance issues?
@hopeful33250 I hope you’re still singing?

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Hi @colleenyoung Thanks for checking in with us! Yes, I’m still singing; working on my breathing exercises (with an EMST150) and I’m back in speech therapy this fall. Have to keep talking and breathing!

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@colleenyoung

Welcome to Connect @aperob. I moved your message to this discussion about Parkinson’s in the Brain & Nervous System group http://mayocl.in/2abXKUs. Here you can meet other Connect members who have Parkinson’s. I’d like to introduce you to @hopeful33250 @trouble43443 @ggopher @denie57 and @hdruss.

You’re not alone. We look forward to getting to know a bit more about you.

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Yes, the answer from the Mayo Clinic pharmacist is posted here:
– Questions about Azilect as a mono therapy for Parkinson’s http://mayocl.in/2clLdN6

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Teresa, tells us more about the EMST150 and breathing exercises you do. I’d also like the group to hear about the choir and singing you do. Do you mind sharing?

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@colleenyoung

Hi @trouble43443 @ggopher @caryp43 @hopeful33250 @burgle @denie57 and @aperob. Checking in.

– @trouble43443 – How is your support group going? How was the speaker from the National Parkinson’s Foundation – MN Chapter?
@ggopher and @burgle are you taking Azilect? How are you doing with food interactions if any?
@denie57 Are you still exercising?
@aperob How are the balance issues?
@hopeful33250 I hope you’re still singing?

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Haven’t started the Azilect. Last we talked, you were going to talk to your pharmacist about my tyramine issue. Meantime I see an expert tomorrow.

Steve

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@colleenyoung

Teresa, tells us more about the EMST150 and breathing exercises you do. I’d also like the group to hear about the choir and singing you do. Do you mind sharing?

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@colleenyoung Sure, the EMST150 is a expiratory muscle strengthener. I use it because I have a paralyzed vocal cord. It’s a device that is best used under the direction of a speech therapist. The EMST150 is adjustable. When you first start using it you set it a low level so it might be the equivalent of blowing out a candle. You practice with it 5 days in a row and then each week you “dial-up” the adjustment so that after 6 or 7 weeks it is the equivalent of blowing up a balloon. It works exceptionally well for me. My voice is stronger when used on a regular basis and coughing and swallowing are also improved. The device is ordered online and costs around $50. Not covered by insurance.

With regards to singing. My speech therapist recommended singing after my vocal cord surgery. She mentioned that singing would strengthen the vocal cords. I sing with a Therapy choir. The choir is made up of folks who have brain injuries or neurological disorders that affect speech. No real singing talent is required (that works well for me), you just need to have the desire to sing (or make a joyful noise!). It is a great activity for both the vocal cords and mood! I would encourage everyone with Parkinson’s to find a place to sing (even if just in the shower), it really is good for speech which tends to weaken with Parkinson’s.

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@colleenyoung

Hi @trouble43443 @ggopher @caryp43 @hopeful33250 @burgle @denie57 and @aperob. Checking in.

– @trouble43443 – How is your support group going? How was the speaker from the National Parkinson’s Foundation – MN Chapter?
@ggopher and @burgle are you taking Azilect? How are you doing with food interactions if any?
@denie57 Are you still exercising?
@aperob How are the balance issues?
@hopeful33250 I hope you’re still singing?

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@ggopher Hi Steve: It is good to hear from you, let us know how your appointment goes tomorrow. I hope you get the answers you need to make a wise medication decision. Teresa

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@colleenyoung

Hi @trouble43443 @ggopher @caryp43 @hopeful33250 @burgle @denie57 and @aperob. Checking in.

– @trouble43443 – How is your support group going? How was the speaker from the National Parkinson’s Foundation – MN Chapter?
@ggopher and @burgle are you taking Azilect? How are you doing with food interactions if any?
@denie57 Are you still exercising?
@aperob How are the balance issues?
@hopeful33250 I hope you’re still singing?

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Colleen, Our speaker from the Nat’l Parkinson’s Foundation was very good.
It was interesting because as she stressed the need to take our meds at a
specific time, an Aide came in and gave one of us our meds, 45 min late. We
also decided that each member would select a topic and discuss that topic
at an up coming meeting, (relieving me of always having to decide on the
topic and lead the discussion.) FIrst one went well. Look forward to a
revised plan for the Mayo Clinic Connect. It was getting rather difficult
to use.
Dorothy

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@colleenyoung

Hi @trouble43443 @ggopher @caryp43 @hopeful33250 @burgle @denie57 and @aperob. Checking in.

– @trouble43443 – How is your support group going? How was the speaker from the National Parkinson’s Foundation – MN Chapter?
@ggopher and @burgle are you taking Azilect? How are you doing with food interactions if any?
@denie57 Are you still exercising?
@aperob How are the balance issues?
@hopeful33250 I hope you’re still singing?

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Well it was an eye-opener. New Dr is head of the PD program here and confirmed Stage 2, “mild”. Told me to start the Azilect and not to worry about the Tyramine in any reasonable food servings. Also, I can narrow the window to no food 20 minutes before and after Sinemet and to move to 4 tabs a day (25/100) 4 hours apart to see if I sleep better with a late dose, ordered a sleep study as I snore and kick all night and lack of sleep makes things worse. Also to deal aggressively with constipation so meds would move thru system better. Really good manner, took time to show my wife and I what he saw in my motion, MRI, and everything. Spent at least 30 minutes with us, maybe more. Really feel much better with the whole situation.

This isn’t medical advice for anyone else but I sure am glad I learned this about my case.

Steve

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@colleenyoung

Hi @trouble43443 @ggopher @caryp43 @hopeful33250 @burgle @denie57 and @aperob. Checking in.

– @trouble43443 – How is your support group going? How was the speaker from the National Parkinson’s Foundation – MN Chapter?
@ggopher and @burgle are you taking Azilect? How are you doing with food interactions if any?
@denie57 Are you still exercising?
@aperob How are the balance issues?
@hopeful33250 I hope you’re still singing?

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@ggopher Hi Steve: I’m so pleased that your appointment went so well. It sounds like you met with an exceptional doctor. While his advice was meant for you there are certainly some grains of truth that can apply to folks with PD. You seem encouraged and that is a good thing. Teresa

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@trouble43443 Dorothy: I’m so glad to hear that your speaker was good. Meds on time is an important part of PD treatment. I’m also pleased that you have developed a plan for future meetings. Having other members take ownership of the meeting topics is a great idea! Often you can get physical therapists and other professionals to speak to support groups such as yours. Best wishes!

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@colleenyoung

Hi @trouble43443 @ggopher @caryp43 @hopeful33250 @burgle @denie57 and @aperob. Checking in.

– @trouble43443 – How is your support group going? How was the speaker from the National Parkinson’s Foundation – MN Chapter?
@ggopher and @burgle are you taking Azilect? How are you doing with food interactions if any?
@denie57 Are you still exercising?
@aperob How are the balance issues?
@hopeful33250 I hope you’re still singing?

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Thanks for the report back Steve! What a relief to get answers and to work with a physician who works with you. It’s the way it should be.

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@colleenyoung

Welcome to Connect @aperob. I moved your message to this discussion about Parkinson’s in the Brain & Nervous System group http://mayocl.in/2abXKUs. Here you can meet other Connect members who have Parkinson’s. I’d like to introduce you to @hopeful33250 @trouble43443 @ggopher @denie57 and @hdruss.

You’re not alone. We look forward to getting to know a bit more about you.

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Could I ask a question to anyone with Parkinson’s- I was diagnosed with Agent Orange Parkinson’s over 2 years ago- I also have Serve Scoliosis from jumping out of Helicopters in the Army ( off and on- for over 40 years plus while in the Army) So the pain in my spine really keeps me off balance- as well does the Parkinson’s- can I ask what is the worse part of your day with Parkinson’s- I don’t ever have a good day, or pain free day- but still , some days are better than others,except the depression is always there- sometimes much worse at times than even the pain. The side affects of PD is so more much than I would have guessed- not to mention the days when all of a sudden you start shaking so hard for about 5-10 minutes, and it happens out of no where, for me usually when I’m out in public- people look at you-as you are drunk or on drugs- and I only drink Starbucks and my Doctors given medication. sometimes I want to say to such a person, – do you know why I’m shaking, or do you even care? but that to me would be rude, which I would not do anyway- it would cause a problem that no one needs right. JJ

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