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chrisj2491

I have PD (Parkinson Disease)

Posted by @chrisj2491 in Brain & Nervous System, 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.

Tags: parkinsons

caryp43

Posted by @caryp43, May 25, 2015

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.

Edited: 02/12/2016 @ 2:33pm

rebeccamcroberts

Posted by @rebeccamcroberts, May 26, 2015

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!

denie57

Posted by @denie57, Fri, Feb 12 at 12:41pm CDT

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.

Edited: 02/12/2016 @ 2:31pm

Teresa, Mentor likes this
hopeful33250

Posted by @hopeful33250, Fri, Jun 24 at 7:59pm CDT

@denie57 Hi, I've been thinking about you. I hope that you are continuing to adjust to your DX of PD, It can seem overwhelming at first. How is everything going for you? Are you connecting with your doctor on a regular basis? I understand that PD patients do best when they stay in contact with their neurologist. Adjustments to meds, etc. can make a difference. Keep us all at Mayo Connect posted on your progress. We represent a good place to share your accomplishments as well as your struggles!
Teresa

colleenyoung

Posted by @colleenyoung, Fri, Feb 12 at 2:55pm CDT

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

denie57

Posted by @denie57, Mon, Feb 22 at 2:47pm CDT

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.

hopeful33250

Posted by @hopeful33250, Fri, Jun 3 at 5:50am CDT

@denie57
Getting a DX of PD can take a long time and I understand your frustration. Employment and PD are not always compatible. My DX came early on, in my late 40s, however, because I've never had tremors I found it too hard to believe. After 16 years and a few falls I decided to revisit that DX and started to take the meds and began to feel more stable. I was grateful for the answer but understand how overwhelming a DX of PD can be. Best wishes to you.

colleenyoung

Posted by @colleenyoung, Mon, Feb 22 at 5:48pm CDT

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!

colleenyoung

Posted by @colleenyoung, Sat, Feb 27 at 4:47pm CDT

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?

trouble4343

Posted by @trouble4343, Sat, May 7 at 9:48am CDT

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.

denie57

Posted by @denie57, Fri, Jun 3 at 2:14pm CDT

Hi Colleen! Sorry it took me so long to respond to your message. As you can guess, the first couple of months after a diagnosis such as PD has been a whirlwind, full of ups and downs, confusion, research and trying to settle into acceptance. Thank you for your encouragement and comments. I am managing pretty well and organizing my busy schedule. Meds are helping for the most part; keeping a positive attitude and excepting some of my limitations at the same time focusing on not laying down, if that makes any sense. I joined the Y 5 minutes from workplace a couple of weeks ago. I work for a school district and they offered employees a membership for $50 a year. Normally $300.00! They have all kinds of unlimited classes for every fitness level, including Yoga and water aerobics. Work is o.k., its keeping the bills paid, and I am not looking to far into the future. Its a day-to-day mindset. Again, thanks for you concern and thoughts. I'll try to keep up with the communication. 🙂

jharsh and Teresa, Mentor like this
hopeful33250

Posted by @hopeful33250, Fri, Jun 3 at 3:41pm CDT

@denie57.  That is great about your exercise plan and also about your day at a time approach to life.  You seem to have a reasonable outlook and that is what is needed to deal with any chronic health condition.  Best wishes!
Teresa 

trouble4343

Posted by @trouble4343, Thu, May 5 at 10:52am CDT

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?

colleenyoung

Posted by @colleenyoung, Thu, May 5 at 3:00pm CDT

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?

trouble4343

Posted by @trouble4343, Thu, May 5 at 4:24pm CDT

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)

trouble4343

Posted by @trouble4343, Thu, May 5 at 4:40pm CDT

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.

ggopher

Posted by @ggopher, Tue, May 24 at 4:39pm CDT

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.

Edited: 05/24/2016 @ 5:17pm

colleenyoung

Posted by @colleenyoung, Tue, May 24 at 8:10pm CDT

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?

trouble4343 likes this
ggopher

Posted by @ggopher, Tue, May 24 at 10:19pm CDT

I was diagnosed about a year ago. Hadn't smelled anything in 15 years or so, had vocal cord implant supposedly due to Epstein-Barr virus I had the previous year but my voice was getting worse again. Had been told my morning fogginess was due to dehydration and to chug water in the morning. Then a new PA tied those and new symptoms together and sent me to a neurologist and she immediately diagnosed PD. That was a real shock. It is assumed to be tied to Agent Orange from my Vietnam service. Been on 3 Sinemet 25-100 since and symptoms are minimal. Do a couple crosswords a day and work out 3 times a week. Had LSLV speech therapy which helped a lot and belong to a support group through the PD center here in East Texas.

trouble4343

Posted by @trouble4343, Wed, May 25 at 2:14pm CDT

The Support Group is a very good thing. It is difficult to keep it "active" when most of the people are not real assertive nor can they speak very loud. I have not lost those two characteristics yet and I am the 'doer' type so I feel responsible for finding something interesting to do or talk about. Are there videos accessible on the computer that we could watch. With only 5 people, we can pretty much gather around one screen. Any topic would be good, because we are all pretty much beginners at PD.

colleenyoung

Posted by @colleenyoung, Tue, May 24 at 8:12pm CDT

@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/

colleenyoung

Posted by @colleenyoung, Sun, Jun 5 at 4:45pm CDT

Welcome back @denie57. No need to apologize for the delay in responding. Your were taking care of your health and that is priority number 1. I appreciate the update. As you can see a small yet supportive PD group is growing here on Connect. Please meet @hopeful33250 @trouble43443 and @ggopher. I hope the 4 of you (and more) will continue to share your thoughts, experiences, challenges and joys.

hopeful33250

Posted by @hopeful33250, Fri, Jun 24 at 8:30pm CDT

@chrisj2491 Hi Chris: I see that you joined the PD discussion group awhile back. I'm a more recent member and I appreciate the comment you made about everyone with PD is different. Even though are DX is the same, we can have many different presentations of the disorder. How are you doing these days? Any progress or challenges that you could share with the group would help us all. I look forward to having you share more of your story. Best wishes,
Teresa

hopeful33250

Posted by @hopeful33250, Sat, Jul 2 at 8:49pm CDT

@trouble43443 I was just noticing your comment about your support group and how difficult it is to keep it going. Since you describe yourself as a "doer type" might I suggest that you get speakers (neurologists, speech therapists, physical therapists, etc.) to come and address your group? Often hearing a speaker can encourage new ideas and can raise discussions to a higher level (as well as being informative). Also, if there is a music therapist in the area, you might add some singing to your support group. Singing has a way of increasing those great endorphins in the brain that make us feel good and by singing with a group we are better connected. Nearby colleges and universities can often supply these type of speakers at no charge and sometimes music therapy students can work with a PD support group as part of their schooling, a type of internship if you will. Keep us informed as to how your group is doing. Teresa

trouble4343

Posted by @trouble4343, Sun, Jul 3 at 1:23pm CDT

Thank you for the suggestion. We have a speaker from the National
Parkinson's Foundation - MN Chapter - this next meeting. We also have the
Packs (for hospital usage) we have to prepare so that will be the next
meeting. I had thought we might get more support from the place we live
(Assisted Living in a Resident setting) but nothing so far. We have a lot
of videos we can watch as well, but I have trouble getting the proper
equipment, so we'll have to see if we can get some help.
Again, thank you.
Trouble4343

hopeful33250

Posted by @hopeful33250, Sun, Jul 3 at 2:23pm CDT

@trouble43443 What a great start you have made. Good work! In Michigan, we have a variety of programs for the PD support groups including the Mark Morris Dance Program for PD. There have been Occupational Therapists and dance teachers that have been trained and certified in this dance for PD, it can all be done in a sitting position but it is great to increase range of motion, balance and flexibility and a feeling of camaraderie. Keep up the good work! Teresa

aperob

Posted by @aperob, Mon, Aug 1 at 7:43am CDT

Does anyone have Parkinson's? Was just diagnosed 🙁

Teresa, Mentor likes this
hopeful33250

Posted by @hopeful33250, Mon, Aug 1 at 10:48am CDT

@aperob Yes, I have a DX of PD as well. I started off with gait and balance problems. As I never had tremors I found it hard to believe that my problem was PD, but the meds for PD really worked to allow me to feel more stable, so I'm grateful for the help. If you feel comfortable sharing your story, please let us know something about your symptoms and the treatment that your doctor is suggesting. I highly suggest physical therapy and exercise for strengthening, this will help you in so many ways. We look forward to getting to know you! Keep your questions and comments coming and best wishes.

colleenyoung

Posted by @colleenyoung, Mon, Aug 1 at 8:00am CDT

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.

ggopher

Posted by @ggopher, Mon, Aug 1 at 8:42am CDT

Hi @aperob,

Pretty scary, huh?

I was diagnosed about a year ago but didn't stumble onto this site until a couple months ago. Unlike some resources, we unfortunately have real experience with PD and we can relate.

I had to laugh when my neurologist asked if I was anxious or depressed. Well of course I was in those first few weeks. But as I dug into it I realized it can a treatable condition for years before it really impacts day to day living. The trick is to keep enjoying life. After all, Michael J Fox has had it for 25 years or more so far and he is still working and doing talk shows. And my wife and I are taking a two week cruise in a couple months. Life goes on. This is just another speed bump.

So, "welcome" to the group.

Coleen, did you have any more info on Azilect/food from your pharmacist?

>

colleenyoung

Posted by @colleenyoung, Mon, Sep 12 at 8:08am CDT

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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