How do you do it?
Posted 07 March 2013 - 07:52 PM
I'd like to poop without a suppository, and without giving birth to a hemmorhoid big enough to name. And, without having a sore hinny the rest of the day. I'd like to do more than one activity a day. If I do laundry, I'd still like to go shopping after dinner.
Today was one of my worse days in awhile. I wake up with a good cry, and I settle in for the night with another one. I guess if it keeps up, I'll ask for an antidepressant. Soon.....soon I won't want to get out of bed. Soon I won't want to bother. Soon, I'll be there, but not yet.
Still don't have a neurologist. And, get this! I am seeing the nurse practitioner until they hire a movement disorder specialist. When I called to discuss my meds, I'm told she's out til the end of May. Therein, I believe, is the root of the problem. There are none in the area, and then when we get out of town, they don't take my insurance.
Sorry for the long post, and thank you to those of you who took the time to read it. It was therapeutic to put my thoughts down in writing.
On a brighter note.....GO FLYERS!!!
Posted 07 March 2013 - 08:37 PM
For me, I woke up on my birthday one year and realized I had stumbled through the last 4 years of my life. I remembered very little of my children growing up during those years. I was over weight and depressed because of my chronic illness. I knew I had to fight back and regain my life. I got a new haircut, new clothes, ,started working out and wearing makeup. Yes, somewhat superficial, but it did the trick. It also could be that I finally had accepted my illness and had learned how to live with it.
I lost 4 years. I don't wish that on anyone. Writing about it helped me also.
Goodluck and keep fighting!
Posted 07 March 2013 - 09:43 PM
Time for bed. Tomorrow has got to be better
Posted 07 March 2013 - 10:14 PM
Posted 08 March 2013 - 01:46 AM
- Make sure someone depends on you - even if it's only a goldfish.
- Refuse to pee the bed (if you're going to keep THAT promise, sooner or later you'll have to get out of bed!)
- Invent three new swear words as soon as your feet hit the ground--it'll distract you from your twisted feet (and, it's harder than you'd think.)
- Find yourself a theme song (mine is, "I get knocked down," by Chumbawamba) and sing it loudly (or, as loud as your soft Parky voice will permit) as the need arises.
- Cry. Give yourself a ten minute cry time, let loose and sob like a baby, then sing your theme song and declare the pity party over (ten minutes is just a guideline, you may need more or less.)
- Laugh - as often as you can find the courage.
- Do something nice for yourself as frequently as possible (I like to have a special tea, just to feel elegant and still a part of the world).
- Call a friend.
- Keep a Journal.
- Be creative.
- Think of one hopeful thing a day.
Dream lovely things for yourself Jenette, because it never hurts to dream.
I'm off to dream about Spring flowers and the planting of a veggie garden,
Hang tough dear,
- jb49, Delta, Vanillab1027 and 1 other like this
Dx 2004, age 45. DBS surgery, 2009: Bi-lateral STN placement; wires to one battery - on my left side. Battery has sustained for 7 years and counting; but I anticipate needing a new one this year (2016). Zero Sinemet CR daily (this took six and a half years to accomplish). 300mg Amantadine daily. 30mg Cymbalta daily. SPS: Right. I invite communication with anyone who wishes to discuss DBS, PD, or any related topic; my email address is: firstname.lastname@example.org - email me if you'd like my phone number.
"Be kind, for everyone you meet is fighting a hard battle." --Plato
Posted 08 March 2013 - 06:07 AM
I live on a small hobby farm. There are lots of physical activities that are required to keep it going. We do have the option of moving to the city and live near the kids and eventually that may happen. But right now I need to go out every morning to feed horses chickens and a bunch of barn cats. As long as I can do this, I will. Because I do keep going, I can. Your positive attitude, tempered with tears and tolerance is sweet Kim. Thanks.
- KimAgain likes this
Posted 08 March 2013 - 09:18 AM
BUT, from a "practical" point of view-if your meds don't work properly to give you a decent symptom relief, you will feel like crap, no matter how hard you try to be positive.
The best key to living happily with PD-is there such a thing? -is to optimize your treatment under supervision of a good MDS in order to feel as normal as possible to do the things you love. whatever these are.
As for the initial question "how do we do it?"...well, apparently, not all of us do it Jenette. not me at least. not yet. and i know that no attitude-no matter how positive-will make me happy again. not until i start living like a near-normal 37 year old woman.
As for crying, i've noticed that whenever i get sad, cry, let it out etc, my symptoms are much WORSE afterwards.
-English is not my first language !
-Aged 40. Diagnosed at 35.
-Currently on madopar (levodopa and benserazide, 600mg daily) and Azilect (1mg daily).
Posted 09 March 2013 - 12:33 PM
- OneWingedVictory likes this
Posted 11 March 2013 - 08:20 PM
Posted 12 March 2013 - 04:01 PM
I hope I don't have withdrawal symptoms!
Posted 13 March 2013 - 12:39 PM
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Posted 13 March 2013 - 08:16 PM
Posted 13 March 2013 - 09:40 PM
Know that life is like a river and this turbulence will pass. Optimize your ability to navigate the stream by consulting with experts. Be informed. Listen to those who have traversed this route before you -- their wisdom and experience has great value. Be vigilant and pay attention to where you are headed. Search out more hands to help when necessary. Celebrate incremental victories. Remember that there is always someone who is depending on you to complete the trip.
And never stop dreaming of making that crossing, no matter the odds.
Edited by OneWingedVictory, 13 March 2013 - 10:16 PM.
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Posted 14 March 2013 - 02:02 PM
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Posted 15 March 2013 - 08:25 AM
Good luck Jenette
- Beau's Mom likes this
Posted 19 March 2013 - 06:45 PM
Posted 19 March 2013 - 08:18 PM
Husband diagnosed in 2005-Medicines: Azilect, Artane, and Amantadine, Levodopa (1X/Day); Sister and Best Friend from Childhood also have PD
Posted 19 March 2013 - 08:32 PM
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 63: Duopa gel via PEG-J tube, 6ml loading dose; continuous dose 2 ml. Trazodone 150 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 135 caregiver hours per month keep me moving.
Posted 20 March 2013 - 08:53 AM
Pd sucks big onions. It is an awful disease and you seem to have more than your share of complications with it. We are all worried for you and care for you. Our collective Karma and thoughts and good wishes are centered on you in Pennsylvania and we hope that you get solutions to your problems. I send you a virtual reassuring hug,
Posted 20 March 2013 - 12:55 PM
Jb... I... well... I... I... have to ask how you understand 'Karma." (another day, another thread?)
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