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#1 justme4108

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Posted 19 March 2014 - 02:41 PM

I TRULY HATE IS DIS EASE.  I AM PRAYING FOR A CURE A  HEALING COMPLETELY.  MEDS. SEEM TO GIVE ME UPSET STOMACH, AND I AM ASKING WHY ME??????????????????  WHERE  IS MY LIFE?

I PRAY EVERYDAY FOR A CURE OR STOP PROGRESSION IS REACHED. 

 

JUSTME4108 :cry:

 



#2 Beau's Mom

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Posted 19 March 2014 - 03:52 PM

Hello and welcome, justme4108,

 

I'm sure there are many here who have felt the way you do now. I know I have. It sounds as if you've been just diagnosed or have been dealing with it on your own for a long time. It is my experience that as you share whatever you feel, you will find support here. When you feel like talking a little more, we'd love to hear a little background such as age, age at diagnosis, what you've tried medication and otherwise for your symptoms.

 

Not everybody has all the symptoms. Some people take levodopa, others take medications known as agonists. I have falling and balance and swallowing issues, but not a great deal of rigidity, for example. I have the depression and anxiety in spades. I take carbidopa/levodopa 25/100 one tab every two hours from 7:30 AM to 9:30 PM, and can't take agonists. I am tired much of the time and have learned how to pace myself.

 

I am on disability; others are still able to work or are struggling trying to get disability. Whatever your problems, there are those among us who have had them, too. Please know that you are welcome to share any time, and we will support you as best we can.

 

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.


#3 dinnes

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Posted 19 March 2014 - 07:57 PM

Justme4108,

 

I agree with Dianne. Share some details when your ready. Having an outlet to share whats going on helps a little. Others often have good ideas to. 

 

I still work and have kids at home. Much of my future remains unclear. I don't have the same faith to pray for healing, but I do have faith to know God is with me through it and there must be a reason. I'm sure there are some people that will not appreciate that. I guess I have more frustration out of someone mistreating me or others than I am about having PD. My PD is early on tho. 



#4 lu states

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Posted 19 March 2014 - 10:34 PM

i can only back up what diane and dinnes have already said.  this is a safe place, and you can find lots of information from others with PD that will help you understand a bit more; and a little more information from you would be helpful.   because you are a newbie, perhaps that means you are just starting out on your medications.  when i started out on sinemet  about a year after diagnoses, and about 10 years into the disease, i found the side effects of the drug to be awful, but my neurologist asked that i stick with it if possible ( sinemet has been known to have terrible gastrointestinal side effects ), and they would go away.   he was right,  after about 3 weeks my stomach issues abated, as did the headache etc.   now it has taken care of the most obvious and annoying symptom of PD, and it has changed everything for the better.   much, much better.    whatever med. you are on, it too may calm down after awhile.    you do not say the timeline of your drug intake, so it is hard to try and guess, but if it is less than a month, you may have much better times just right around the corner.    best of luck to you, and you have found a wonderful site !    lu   



#5 justme4108

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Posted 20 March 2014 - 06:24 PM

Thanks to much for the replies, I do appreciate the response and support and understanding from you all.

Look to hear from me soon.

 

justme is smiling anyhow :razz:



#6 bjenczyk

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Posted 21 March 2014 - 06:16 AM

I think you are getting some good advice.  It is natural to feel down sometimes, but don't live there.  The darkest period of my life was probably the two months after my diagnosis.  Since then, I have decided to make the most of my life whatever my limitations.  I don't manage to do that at all times, but that attitude helps me to get up again when I am down. 

 

There are a lot of people on this forum who know exactly what you are feeling.  Don't ever feel alone in your condition.  Many of us pray for the others with this condition, and I truly hope you can find the strength you need to win your own daily victories over PD.  God bless you.


Dx'd 3/12 @ 48. Symptoms 7 years prior.
carbidopa/l dopa 25/250 6x daily, CR 2 pills at bedtime
No DaT scan, normal MRI. Dx'd by observation of neurologist,

Symptoms: left side rigidity when "off", sleep disruption, no sense of smell, minor fatigue, back pain

 

Still an optimist - what is wrong with me?


#7 Trying hard

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Posted 27 March 2014 - 08:33 PM

I will be praying for you, here is exactly where you need to be!  There is no where else you'll get the support, information and understanding than here.


"There is in every woman's heart a spark of heavenly fire, which lies dormant in the broad daylight of prosperity; but which kindles up, and beams and blazes in the dark hour of adversity."  Washington Irving

 

"I shall pass through this world but once.  If, therefore, there be any kindness I can show, or any good thing I can do, let me do it now; let me not defer it or neglect it, for I shall not pass this way again."               Stephen Grellet

 


#8 New normal

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Posted 29 March 2014 - 11:28 PM

Billy Joel wrote in one of his anthem songs, "to wait til your second wind comes along..." Each crisis I have experienced eventually subsides a bit and allows me to refocus and continue the battle before me. I hope the same for you. Sometimes our best tool to fight against any foe is just to outlive it....you are making the right choice to share your frustration with like minded people who understand.

And when you do receive your second wind ....and I know you will.....and find yourself able to deal with whatever is your nemesis, suddenly you discover capacity and stengths you never knew existed within you...irrespective of disease or depression..it will be so undeniable that you will find yourself extending your hand to someone who is awaiting his "second wind"....and then, softly emerges the answer to your question...and you will know "why you".....

I firmly believe the strongest of spirits receive the harshest challenges...for it is we who can serve and nourish others eventually. Yeah, PD is the pits...but if it gives us empathy, commiseration, wisdom, patience, kindness, ...it just might not be too bad a trade off....

I in no way want to diminish your agony.....I am only feebly trying to say I understand. Once you are able to lift your eyes a bit and look at the horizon, it will become more clear....I wish you well, my friend.
Dx'd 6/13 @ 66 by MDS in office with sub linquil L dopa challenge. Carbidopa/l dopa 50/200 5x in 24 hr span.
Reaction to Amantadine 100 mg 2x per day,Discontinued, 4/15.
Normal DaT scan '13, normal MRI, '13 Second DaT scan, 10/14, normal.
Symptoms: 90% controlled: significant tremors rt & lft side, rt leg drag whn tired, balance, slow movement, cognitive/ speech issues, apathy, full body dystonia seizures approx one per day, dysfunctional autonomic systems
Cherish your loved ones, make memories with them..........now.

#9 Beau's Mom

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Posted 29 March 2014 - 11:49 PM

Resilience becomes instinctive and I have made it my new middle name. In the 1990's, I told my doctor at the time that my middle name was constipation!

 

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.





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