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Chris J
@chrisj2491

Posts: 4
Joined: Feb 12, 2015

I have PD (Parkinson Disease)

Posted by @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.

REPLY

I have been diagnosed with early on set Parkinson’s and dementia. The parkinsons was not confirmed by the UCSF neurology dept. I have been seeing the vascular neurology department. I am currently trying to find a nurologist who specilizes in dementia and pain managment.

@caryp43

I have been diagnosed with early on set Parkinson’s and dementia. The parkinsons was not confirmed by the UCSF neurology dept. I have been seeing the vascular neurology department. I am currently trying to find a nurologist who specilizes in dementia and pain managment.

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Hi @caryp43 – If you would like to seek help from the specialists at Mayo Clinic, I would recommend that you call one of our appointment offices (Arizona: 800-446-2279 Florida: 904-953-0853 Minnesota: 507-538-3270). Let me know if you have any other questions!

Hello! My first time on the site. I was recently diagnosed with Parkinson’s disease. I am 58 years old! Raised 4 children as a single parent and was looking forward to my golden years (travel, hobbies, networking, social etc,) Devastating blow that makes me hopeful that something good will come from this and then in the same hour feeling hopeless and vulnerable. Trying to figure this whole thing out.

Hi @denie57,
Welcome to Connect. I’m glad you found us.

I can imagine that you are experiencing a roller coaster of emotions. Sharing with others in a similar situation can really be a lifeline as you work on figuring things out. That’s why I moved your message to this thread where you can connect with @Nepeta_Cataria and @chrisj2491. I’m also tagging @rutledgeker and @pattybelsterling hoping that they will join the conversation too.

Tell us a bit more about you. What symptoms led to your diagnosis? Do you kids live with you or near you?

We look forward to getting to know you.
Colleen
Connect Community Director

Thanks for your reply. 🙂 I’m looking forward to sharing my story. This has been long 2 year struggle to get to a diagnosis. I live in Los Angeles, Ca. It started in 2014 with a horrible bout of vertigo which left me disabled for 6 weeks. I lost my balance and hearing in right ear. During that year, I was going back and forth to my primary with concerns about stiffness, pain in joints, loss of motivation, depression and fatigue. Saw ENT also for hearing loss which took about a year to return to about 80-90%. But, I never really regained my balance. Took Yoga classes and went to PT for balance exercises. Other symptoms started to appear in 2015. Slight left hand tremor in certain positions, hoarseness that my primary kept attributing to post-nasal drip, dragging of left side when walking, constipation, persistent fatigue, slurring of speech and loss of the ability to multitask which I was always good at. After seeing a lot of specialists and testing, I finally saw the neurologist who diagnosed me in Jan., 2016. I am still working but have a commute that will probably force me to retire. I have told my employer and some co-workers. I am on FMLA to hopefully protect my job until I am forced to exit. It seems as though they would rather that I just resign. I am beginning to get passed over for assignments. 🙁 I am fine for now, but unsure of the rate that my symptoms with progress. Trying to work another year or so. I have a wonderful partner for whom I have been with for 15 years and live with. He also has some health issues but we have managed to maintain loving relationship and help each other with life’s challenges. He has been very supportive! Our future is uncertain as to whether one or other of us will need constant care. We are taking it a day at a time. My children are 25-34 years of age and live close by and are thriving in careers. My partner has 2 daughters who are 27 and 33, not so close. I have one grandchild age 2. I am currently researching fitness classes that will work with my hectic schedule and support groups for newly diagnosed PD patients who are not necessarily in the latter stages of the disease. I also will be starting Speech Therapy in a few days. Thank you for listening and caring.

Thank you @denie57 for sharing your ongoing journey. It must be tough accepting your new reality, managing it well, but getting passed over for assignments at work. I admire how you are taking a proactive approach to both your physical and emotional wellbeing. I hope your employer helps you work as long as possible so that you can also take care of your financial wellbeing. At yoga classes, I always hear the teachers say it doesn’t matter if you can’t balance, just trying to do it improves our balance. Good for you!

Hi @denie57,
How has your week been?
In the 2 messages you’ve posted so far, I was immediately struck by your ability to take the bull by the horns, so to speak. Pick yourself up and put things into action to care for yourself. This despite dealing with lack of diagnosis, ongoing physical and mental symptoms, including depression.

Have you had any luck finding fitness classes and an in-person support group for people with early PD?

Hi, I’m new at this, but I am not new to Parkinson’s. I’d like to connect with other PD folks. I live in an Assisted Living facility and we (5 of us) have recently started a Support Group. We find such interesting differences in how our meds are delivered and what our Doc’s say about protein! Have any of you compared such things?

Welcome @trouble43443. I’m glad you got logged on!
I’ve moved your message to this discussion where others are talking about PD. I also want to invite @burgle to join you here.

I completely agree with you Trouble. It’s amazing to connect with others and “compare notes”. Good for you for getting your own support group started. With your help I think we can get a virtual one started here too. 🙂

When were you diagnosed with Parkinson’s? What kind of stuff are you hearing about protein?

@colleenyoung

Welcome @trouble43443. I’m glad you got logged on!
I’ve moved your message to this discussion where others are talking about PD. I also want to invite @burgle to join you here.

I completely agree with you Trouble. It’s amazing to connect with others and “compare notes”. Good for you for getting your own support group started. With your help I think we can get a virtual one started here too. 🙂

When were you diagnosed with Parkinson’s? What kind of stuff are you hearing about protein?

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My Doc says protein and Sinemet don’t go well together (not exactly like he put it) One of the other members of our support group is given 2 bottles of “Ensure-like” drink before she takes her morning Sinemet – and they are high in protein. Research I have done suggests there should be a time-span between protein and Sinemet. One of the other members takes a high protein drink every day. I don’t think my Doc would like it if I did that. He says get the ‘normal’ amount of protein you get with meals, don’t add any extra. It screws up the way the Sinemet works in the body. (non-technical definition)

@colleenyoung

Welcome @trouble43443. I’m glad you got logged on!
I’ve moved your message to this discussion where others are talking about PD. I also want to invite @burgle to join you here.

I completely agree with you Trouble. It’s amazing to connect with others and “compare notes”. Good for you for getting your own support group started. With your help I think we can get a virtual one started here too. 🙂

When were you diagnosed with Parkinson’s? What kind of stuff are you hearing about protein?

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Who knows when I was diagnosed? Tremor started years ago, but it may have been Essential Tremor (which is causing a lot of problems right now!). The stiffness et.al., was first treated in 1995 and I was given some “medicine” for Parkinson’s. Then they decided against it and treatment and meds stopped. A couple of years ago I went back to the Doc who had diagnosed the Essential Tremor and asked him if I had Parkinson’s and after some tests and watching me walk, he said yes and started me on Sinemet. I have taken a variety of strengths and amounts and whatever and am now on 5 — 25/250mg a day at 6, 10, 2, 6, and 10. Recently I started on Mysoline and when we got to 3 — 50mg at night, the Essential part of my tremor pretty much stopped. WONDERFUL. I can’t tell when the Sinemet kicks in, I never have felt it. Don’t know what that means.

@colleenyoung

Hi @denie57,
How has your week been?
In the 2 messages you’ve posted so far, I was immediately struck by your ability to take the bull by the horns, so to speak. Pick yourself up and put things into action to care for yourself. This despite dealing with lack of diagnosis, ongoing physical and mental symptoms, including depression.

Have you had any luck finding fitness classes and an in-person support group for people with early PD?

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I have Bi-Polar Disorder II so I know depression quite well. (Could actually use a little mania sometimes.) It is really not an issue as it is well controlled with meds. As for fitness, I ‘work out’ in our Wellness Center 3 X’s a week – right now I am 15 min. on NuStep and 15 min. on TreadMill. Am working for 30 min. on TM because I have spinal stenosis and I should be walking more. (No panic – All I do is ‘slow walk’ on TM.) Have had 4 knee surgeries and have a rod from hip to knee (from a femur break) in right leg, so walking really isn’t my strong suit.

Living in a nursing home, and without a car, my outside activities are pretty much just Doc appointments.I also do some writing activities for the nursing home, so I do keep busy. My best “keep busy” is my black cat Sabrina. It is getting more difficult to take care of her, but she is sitting between me and the computer
keyboard now (her usual spot when computer in use) so she earns all the love she deserves.

@colleenyoung

Welcome @trouble43443. I’m glad you got logged on!
I’ve moved your message to this discussion where others are talking about PD. I also want to invite @burgle to join you here.

I completely agree with you Trouble. It’s amazing to connect with others and “compare notes”. Good for you for getting your own support group started. With your help I think we can get a virtual one started here too. 🙂

When were you diagnosed with Parkinson’s? What kind of stuff are you hearing about protein?

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ForTrouble: I was recently diagnosed, Agent Orange related assumed. 70. On Sinemet 25/100.
Medical staff at PD center here says don’t take Sinemet within an hour of protein as protein interferes with absorption. They also say to take it with sugary drink like juice to hapelp it cross the brain-blood barrier. I can’t tell much difference but I am doing it their way.

Don’t see much traffic in this group – would like to start discussion of Azilect and food restrictions. RX brochure and doctors don’t say much but mfrs website and on-line stories of high blood pressure from eating processed meat, eggplant, cheese and everything else I normally eat made me afraid to start taking it.

Welcome to Connect @ggopher. We’ve got a small group here forming about PD. I’m glad you could join us and specifically for your offering useful information for @trouble43443 about taking Sinemet.

Gopher, when were you diagnosed with PD? I like how @denie57 and @trouble43443 have shared the activities (cats, computers and walking when possible) that they do to stay fit and sharp. What are your favorite activities?

Liked by trouble4343

@ggopher why don’t you add your questions and thoughts about Azilect and food restrictions on this thread that @burgle started a few days ago https://connect.mayoclinic.org/discussion/hi-does-anybody-have-good-results-taking-azilect-as-a-mono-therapy/

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