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PATIENTS LIKE ME


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10 replies to this topic

#1 invisable

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Posted 17 July 2013 - 04:52 PM

Just wanted to let everyone know about a very good support group (on-line) called PATIENTS LIKE ME.

Good quality support and information.

#2 Donald Ennis

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Posted 17 July 2013 - 06:02 PM

It asked if I wondered why I was having a crummy experience, I thought it was cause I have PD and typing was a pain in the Butt, but apparently it was cause my browser is out dated, I updated my browser, still have PD and shaking, so it wasn't my browser after all, I did that the good people at patientslikeme for suggesting the browser might be the problem but let them know the browser did nothing for my PD.

On a more serious not, the site looks cool, I'm alittle nervous about how much info they let you put in regarding your medical history, but none the less cool site

Edited by Donald Ennis, 17 July 2013 - 06:02 PM.


#3 Drummergirl

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Posted 17 July 2013 - 06:47 PM

I was posting on PLM, but after a few months I found it to be a bit depressing and too much like a facebook page......plus they changed the entire set up( look and design of the site). Kinda went in a different direction for me. Maybe it's improved.
Karen

Dx in 95' at 35- Normal MRI, Abnormal Da t Scan- Resting tremor- right foot, leg tremors. RX- 25/100 Carb/ l <600 mg,
1mg -Azilect, 3x daily -25/100 ER Carb/ Levodopa.

#4 invisable

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Posted 18 July 2013 - 12:35 PM

I would give it another chance, the people are very knowledgeable and inspiring. I wouldn't say depressing, but they are realistic in what they have to say, I have learned a lot from them.

#5 Drummergirl

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Posted 18 July 2013 - 07:35 PM

Thanks,
Perhaps I will.
Karen

Dx in 95' at 35- Normal MRI, Abnormal Da t Scan- Resting tremor- right foot, leg tremors. RX- 25/100 Carb/ l <600 mg,
1mg -Azilect, 3x daily -25/100 ER Carb/ Levodopa.

#6 vipowitz

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Posted 20 July 2013 - 06:18 PM

i never really disclosed this theory in the forum, but I have to (and badly want to) believe that there are many of us Parkies who are hghly functional and don't really participate in the forums

#7 invisable

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Posted 20 July 2013 - 07:30 PM

In my opinion being highly functional has nothing to do with participating or not participating in forums.

A support group in my opinion is a place where one can receive understanding from people that one could not receive from others that do not share the same circumstances (for example having Parkinsons.)

We can learn from each other while supporting each other, which hopefully will result in us becoming even more functional.

btw - Here you are on a forum! just sayin......

#8 Pokermid2

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Posted 25 July 2013 - 09:08 PM

I wouldn't want to be a member of a group that would even contemplate me becoming a member!!

Go to Heaven for the climate, Hell for the company!


#9 Beau's Mom

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Posted 30 July 2013 - 12:11 PM

I use Patients Like Me to track symptoms, mood, treatment effectiveness, weight, quality of life and many other measures they offer. It allows me to print out a summary for my MDS visits.

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.


#10 Donald Ennis

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Posted 31 July 2013 - 05:56 PM

I wouldn't want to be a member of a group that would even contemplate me becoming a member!!


And yet here you are...... a member of this forum/group.

#11 Jenette

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Posted 01 August 2013 - 04:13 PM

This is a great group of people. It's not a forum, it's family! Love you guys




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