Jump to content


E-Newsletter Signup Like us on Facebook Sign Up For Our e-Newsletter
Photo

To our 'First-timers': WELCOME


  • Please log in to reply
130 replies to this topic

#121 edamame

edamame

    Newbie

  • Members
  • Pip
  • 3 posts

Posted 19 October 2014 - 02:51 AM

Hello. My mother is in her late 50s and was just recently diagnosed with PD after symptoms lasted for a year. Her own mother had just passed away, so we all thought her sudden rapid aging was related to grief, but she didn't bounce back. I've told a number of my "friends" who have all ignored me and my siblings seem to want to remain in denial. My mother is still mobile but I notice she is starting to have a tendency to fall back, especially going up stairs so I worry she might lose her balance one day and have a bad accident. Today, we had a family trip using public transportation and I had to physically grab her to prevent this.

 

She was diagnosed only last week, so I'm still unsure as to getting her the right doctor and medicine. She'd currently taking Carbidopa/Levadosa. Would physical therapy help her? Is there another medication I should ask for first, as I know the C/L combo can lose its efficacy?

 

To be honest, I feel very alone. My mother doesn't work and my father is retired, but due to a small deformity in his leg, cannot walk very well. So my mother has always been the one taking care of her family. I want to get her the right support system and I feel like I'm a poor (and sometimes, only) fall back on that.


Edited by edamame, 19 October 2014 - 02:52 AM.


#122 Rogerstar1

Rogerstar1

    Rogerstar1

  • Banned
  • PipPipPip
  • 1,891 posts
  • LocationWashington, DC

Posted 19 October 2014 - 06:21 AM

The stresses and strains of dealing with the grief occasioned by her own Mother's passing may well have played a role in your Mom's PD onset in my opinion.  I  also think L-dopa meds currently is the correct call if she is 'tippy' on stairs and they seem to be helpful.  I learned on this forum that most catastrophic staircase accidents take place headed up rather than while descending.  I have railings to grab  on both sides of my stairs as a precaution...and I now use them both every time.  It is a great advantage to your mother that she has you to care for her. I envy you being in your Mom's proximity and abiliy to ease her way.  My own 97 year old father lives 300 miles distant and I worry about him frequently.  Best of luck to you in all things.  Welcome to this place, too. 

 

 

PS.  Your neat avatar is for Halloween or you're a birder?


Edited by Rogerstar1, 19 October 2014 - 07:17 AM.


#123 Golden01

Golden01

    Advanced Member

  • Members
  • PipPipPip
  • 745 posts

Posted 19 October 2014 - 09:27 AM

Welcome to the club you didn't want to join. You are a great daughter and your mother is lucky to have your support and concern. I am convinced  PT and exercise makes all the difference. Try to find her a Movement Disorder Specialist and a physical therapy program that specializes in PD are my suggestions. 


Husband diagnosed in 2005-Medicines: Azilect, Artane, and Amantadine, Levodopa (1X/Day); Sister and Best Friend from Childhood also have PD


#124 anitav

anitav

    Advanced Member

  • Members
  • PipPipPip
  • 34 posts
  • LocationNear Nashville, TN

Posted 19 October 2014 - 02:08 PM

My PD husband and I are new to this neighborhood, too, but this site has been more help to me than any of the medical sites I have visited. You will find love and support here, and information from the people who live it.
Your mother is so fortunate to have you to care and to care for her. It seems like she provided you a good example and is now reaping the benefits.
I hear our road ahead will be difficult, but rewarding. With support we can do it.
It helps me to learn that many of the things I see happening are part of the disease. It helps me know what questions to ask the doctor.
No questions are taboo here. Come back often.

#125 F-SIL

F-SIL

    Newbie

  • Members
  • Pip
  • 1 posts

Posted 21 October 2014 - 07:17 PM

I am a new member. My BIL has PD. He has taken a turn for the worse after suffering back pain which kept him in bed for a few days, unable to speak much and unable to feed himself. He seemed to go into full blown dementia. It's been about 10 days since the episode and he is able to walk and talk a bit but I don't think he'll come back to where he was. It seems that each time he has an episode, the PD gets the upper-hand a bit more. His kids and I are looking to move him from his home into a semi-care facility, in the next few months. I'm having a hard time finding a support group close to me. There's a great one in Los Angeles but getting to downtown means heading back into rush hour traffic after work. I'm sure there are others but I must be searching in the wrong areas online. I think I'll try calling the local hospitals. I would appreciate other suggestions. This is a great site with a lot of information. Thanks everyone for sharing.



#126 Beau's Mom

Beau's Mom

    Advanced Member

  • Members
  • PipPipPip
  • 1,859 posts
  • LocationSeattle, WA

Posted 21 October 2014 - 11:04 PM

Welcome, F_SIL,

 

If you call the NPF helpline listed on the homepage, they might be able to tell you of other caregiver support groups near you. I was moved into a group home way too soon, and with appropriate medication dosing from my MDS, post surgery PT, a caregiver part time and no family support, I do quite well living independently. I am a social worker and know how to find and qualify for resources. You and your brother's children might want to consult a social worker if you haven't already. Another good place to get information on levels of care nationwide is a website called "A Place for Mom."

 

I hope you all get all the support you need, wherever you live. For between meetings, this place is always open!

 

Dianne


I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

 

First symptoms: right-hand tremor, constipation and restless arms 1978 (age 25). Depression and anxiety (non-motor symptoms) began in 1989 and worsened through the years. Last inpatient episode June 2013.

Diagnosed December, 2010 by a regular neurologist (age 57). After negative reactions to Requip, Mirapex and selegiline began Sinemet 25/100 3x/day. First MDS visit in Houston in February of 2011 was inconclusive. Second MDS visit at Baylor Fort Worth in May/June 2011 diagnosis changed to Parkinsonism, Sinemet stopped. Third MDS visit in August 2011 in WA State: received a confirmed diagnosis of idiopathic PD which had started on the right side and had now crossed to the left side as well. Restarted on Sinemet 25/100 4x/day. A short trial of Amantadine caused audio hallucinations in September 2011.

 

Current medications at age 62: Sinemet 25/100 ODT every 2.5 hours while awake (7/day). One Sinemet 25/100 CR between midnight and 4 AM. Trazodone 200 mg at bedtime, Fluvoxamine 300 mg at bedtime. Clonazepam 0.5 mg morning and afternoon, 1 mg at bedtime. Vit D3 2x/day, Calcium Carbonate Susp. 5 cc daily, Baclofen 10 mg 3x/day, Flonase two sprays 2x/day, Calcitonin-Salmon nasal spray once daily (for osteoporosis). Gel eye drops as needed throughout the day, Restasis Eye drops 2x/day, Nighttime eye ointment at bedtime. 02 2L per nasal cannula while asleep. Walker, electric wheelchair, moist and soft or pureed foods and 115 caregiver hours/month keep me sane.

 

All of the above subject to change based on progression, stress level, and dyskinesia. Whew! I'm glad I finally wrote that all out.


#127 Peaches

Peaches

    Newbie

  • Members
  • Pip
  • 1 posts

Posted 09 November 2014 - 01:48 AM

Wow!! Not sure if I should even post!!! But here it goes.....I'm a 34 yr old stay at home mom with 2 kids a husband and 4 animals. (The kids are not considered animals and I guess the hubby is not either) My mother has had PD for 15-20 years now but it has been slowly progressing. I gave found so much info on this site. Thanks for all the info. I'm a little overwhelmed I thought it would be so much easier!! She's my mom my rock and now I'm suddenly having to dress her.

#128 Rogerstar1

Rogerstar1

    Rogerstar1

  • Banned
  • PipPipPip
  • 1,891 posts
  • LocationWashington, DC

Posted 09 November 2014 - 02:25 AM

Welcome, assuredly.  I love your screen name and wonder if it is your realtime nickname or your actual first name.  Peaches is a fairly common name in the African American bastions of Washington, DC.  Good of you to look after your Mom. Don't rule out DBS surgery for her.  I'm 20+/- years into my bout with PD and at 17.5 years it  really helped me considerably.  Keep in touch.


Edited by Rogerstar1, 09 November 2014 - 02:32 AM.


#129 Sara Kay

Sara Kay

    Advanced Member

  • Members
  • PipPipPip
  • 41 posts
  • LocationBloomington IN

Posted 10 November 2014 - 04:38 PM

It's not very hard to start a PD group for caregivers and/or people with PD. My husband who has PD and i started a group. We asked our faith group if we could use our center. After we got the OK we put an article in the daily paper and got 10 folks at our first meeting. Now there are five couples who meet regularly with us, once a month for the people and their partners who have PD and once a month just for the caregivers. We email each other in between, meet for coffee and keep in close touch. It really helps all of us so much. People bring articles to share, talk about their meds and how they help or not, compare symptoms and give advice.


Sara Kay :cool:  :razz:  :oops:  :oops:  :???: 


#130 edamame

edamame

    Newbie

  • Members
  • Pip
  • 3 posts

Posted 17 April 2015 - 11:06 PM

First came here six months ago. My mother had a few minor accidents but a recent fall really alarmed me. I was focused on visiting my grandparents at a home when their appetite took a down turn. One of my sisters still lives with her but I think she's too young to understand how serious PD is. I was pretty terrified at how fast it seems to be progressing. My mom lost a lot of weight. Does PD affect appetite? Her gait's a very minute shuffling -- i hope it's just the stress of the fall and that she'll return to a better one.

 

I also feel terrible, because I know she's been stressed for me since I'm struggling with finding employment. I also had to end a negative friendship with someone who insisted on spinning worst-case scenarios and feeling pity for me. I'm a mess.

(If this is the wrong thread to post, I apologize. Please let me know where I can go.)



#131 Golden01

Golden01

    Advanced Member

  • Members
  • PipPipPip
  • 745 posts

Posted 17 April 2015 - 11:33 PM

No thread is a wrong thread. Does she see an MDS? My husband's doctor reminds us that with PD nothing usually happens fast. We've found that to be true and when changes occur quickly, it is often something other than PD. A visit to a good doctor often helps sort it out. Sounds like you have a lot going on in your life, that is never easy. 


Husband diagnosed in 2005-Medicines: Azilect, Artane, and Amantadine, Levodopa (1X/Day); Sister and Best Friend from Childhood also have PD





1 user(s) are reading this topic

1 members, 0 guests, 0 anonymous users


    ang08