Share this:

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


carolyn
@caryp43

Posts: 1
Joined: May 23, 2015
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.


Rebecca McRoberts
@rebeccamcroberts

Posts: 197
Joined: Feb 25, 2015
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
@denie57

Posts: 7
Joined: Feb 12, 2016
Posted by @denie57, Feb 12, 2016

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.


Teresa, Volunteer Mentor
@hopeful33250

Posts: 1570
Joined: Mar 28, 2016
Posted by @hopeful33250, Jun 24, 2016

@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


johnjames
@johnjames

Posts: 136
Joined: May 24, 2016
Posted by @johnjames, Oct 23, 2016

I was diagnosed with Agent Orange Parkinson’s about 2 1/2 years ago, as time goes by does anyone experience how hard the morning are, my body just won’t move, my mind is awake and ready to go- but my body just won’t follow for at least 1-2 hours. Does anyone else have such a problems, and if so, what do you for for it, It seems to be more and more controlling my life- especially when you can moce very well until almost noon. JJAMES


Teresa, Volunteer Mentor
@hopeful33250

Posts: 1570
Joined: Mar 28, 2016
Posted by @hopeful33250, Oct 24, 2016

@johnjames Early morning stiffness is a common problem for PD folks. You don’t mention how you take your meds however, often taking some PD med at bedtime can help the early morning symptoms. Also I read an article about Michael J. Fox and he spoke of extended time in a hot shower first thing in the morning. Early morning showers and evening showers as well helps with the stiffness. Does anyone else have suggestions!


johnjames
@johnjames

Posts: 136
Joined: May 24, 2016
Posted by @johnjames, Oct 24, 2016

Yes the shower does help- but because I have serve Scoliosis of the lower spine ( from jumping out of Helicopters while in the Army for many years- when I retired just a few years ago- my spine bend almost over night- thank God my wife is a nurse and new what it was, it bend 24% to the left and the lower dic’ were gone or so deteriorated that I could barley walk. They tried all kinds of the things- shots, pain doctors -tried many things that did not work.. The pain never stops and stays about a 7-8 most of the time- I still go to spooners therapy to learn to work out and box the best I can and stay in some kind of shape. In recon we would jump out from 10-12 feet above the ground with a 60-80 lbs pack on, and when you hit the ground you would stick one leg in a rice pattie- Well enough of war stories, the body is worn out and you do the best you can Thanks for the tip- I will try that more often- have a good day and I hope a little fun along the way, HOOAH JJAMES


Teresa, Volunteer Mentor
@hopeful33250

Posts: 1570
Joined: Mar 28, 2016
Posted by @hopeful33250, Oct 24, 2016

@johnjames You show incredible bravery as you did during the war and now in your own personal pain. God bless!


Colleen Young, Connect Director
@colleenyoung

Posts: 3152
Joined: Jul 23, 2014
Posted by @colleenyoung, Feb 12, 2016

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
@denie57

Posts: 7
Joined: Feb 12, 2016
Posted by @denie57, Feb 22, 2016

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.


Teresa, Volunteer Mentor
@hopeful33250

Posts: 1570
Joined: Mar 28, 2016
Posted by @hopeful33250, Jun 3, 2016

@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.


Colleen Young, Connect Director
@colleenyoung

Posts: 3152
Joined: Jul 23, 2014
Posted by @colleenyoung, Feb 22, 2016

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!


Colleen Young, Connect Director
@colleenyoung

Posts: 3152
Joined: Jul 23, 2014
Posted by @colleenyoung, Feb 27, 2016

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
@trouble4343

Posts: 36
Joined: Apr 28, 2016
Posted by @trouble4343, May 7, 2016

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
@denie57

Posts: 7
Joined: Feb 12, 2016
Posted by @denie57, Jun 3, 2016

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. 🙂

Please login or register to post a reply.