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#1 Jlc

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Posted 11 October 2013 - 11:41 AM

Hi everyone,

My name is James and I'm from Ottawa, Canada. I am 29 years old and have not yet been diagnosed. Actually, I fear that this is going to be a long, drawn out process and this is actually my biggest fear.


Anyways, I have a question about video games. I have always really loved playing video games and worry that I might not be able to play much longer, if I'm diagnosed. Do any of you play video games? If not, do you think you would be able to?


Thanks so much and nice to virtually meet all of you.


James

#2 Carl Carter-Schwendler

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Posted 11 October 2013 - 12:14 PM

Hi,

 

I'm 44 and DX'd in January. I'm a fairly avid video game player, although I don't play as much as I'd like. My symptoms are still pretty minor. My biggest problems are with quick time events, those pesky situations where you have to rapidly push a controller button when someone attacks you. I can still usually get through them, but it's harder.

 

Occasionally my adrenaline gets up and I start shaking too bad to play, but that doesn't happen often. If I'm relaxed I do fine.

 

PD will probably have an impact, but hopefully just in the types of games you choose and the skill level you set.



#3 Jlc

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Posted 11 October 2013 - 12:29 PM

Thanks Carl. I really appreciate the response. I'm really hoping it won't drastically affect my ability to play.


Thanks again.

#4 Beau's Mom

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Posted 13 October 2013 - 05:55 PM

I'm not sure if this will inspire hope or not, but most Assisted Living Facilities, Nursing Homes and the like use Wii extensively to help folks maintain and even regain lost skills. The best for me are brain game training programs like Lumosity. Lumosity provides a variety of games that help keep you cognitively sharper. They measure speed, flexibility, memory, attention and problem solving. You could sign up for a lifetime member ship now and save yourself thousands upon thousands of dollars through the years! Unfortunately, when I had my first symptoms the video game industry was somewhere between PONG, PAC MAN and Frogger! I never could master Mario Kart: the little car kept turning backwards and going to wrong direction!!!


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.


#5 Jlc

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Posted 13 October 2013 - 07:08 PM

Pong and packing man!!! That's 20 + years ago!!!


Yes, I have read articles about using wii for therapy. I'm more concerned about whether or not I will be able to use a controller.


I guess for now I should just forget about it as I don't even have any diagnosis yet.

#6 Daven

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Posted 13 October 2013 - 08:58 PM

Pong came out over 40+ years ago.



#7 Jlc

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Posted 13 October 2013 - 09:04 PM

Pong has been out for 40 years??? Wow!


Beau's Mom... Just when did you start having symptoms?

#8 Daven

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Posted 13 October 2013 - 11:13 PM

41 to be exact.  It was the first video arcade game.


Edited by Daven, 13 October 2013 - 11:14 PM.


#9 Beau's Mom

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Posted 14 October 2013 - 11:36 AM

My first symptoms, slight hand tremor on the left and the RAS, and constipation began between age 26 and 28 (1977-1979).


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 Jlc

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Posted 14 October 2013 - 11:53 AM

Interesting, that is around my age now. You seem to be doing well (still able to type and still in good spirits). Do you hope to get Duodopa pump at some point? I have read that you are not able to get DBS (that's a shame). I'm sure that in the next 5 to ten years there will be large leaps and bounds for PD treatment, and maybe, if everyone is extremely lucky, a cure in 5-10 years. 

 

Do you have any advice for someone who is not yet diagnosed but everything points in the direction of PD? Do you have any tips that have helped you along the way?

 

Thanks so much and it's a pleasure to meet you. 

 

James



#11 Beau's Mom

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Posted 14 October 2013 - 08:56 PM

I guess I would have to say I'm grateful that I learned what I'd been suffering through only in hindsight. If I'd know ahead of time, with my capital O llttle cd (Ocd), I'm sure I would have been a mess. I glad I had a good deal of life skills developed by the time I was diagnosed. Oh, for the years when I was blissfully unaware of the huge scythe hanging near my neck!

 

Don't sweat the small stuff. When you hit big losses, grieve them instead of running from your feelings. It's stuffing your feelings that will kill you quicker than trying to deny them, because grief releases stress. while resistance increases it. Plan for the worst but expect the best. And one of my favorites, from a church readerboard in Texas in 1983:  Why pray when you can worry?


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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