PD Progression, stages and what to expect

Posted by dgalindo @dgalindo, Mar 31 8:33am

My dad is 82 yrs old PD diagnosed. He was doing well overall until a couple of weeks. This time around he is feeling very tired, week and barely can stand up or get out of bed. Any thoughts on what to do, what to expect? how to support him? is he heading to the point of no return?

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Profile picture for popo1 @popo1

hello ... i was dx'd about 5 yrs ago at age 66 and go through bouts of the same. almost every time i find it is inflammation causing it. 'my' go-to for this is ibuprophen. also, for energy i take a vitB complex, heavy on vitb-12.
best of luck...

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@popo1

As you look for someone to give you a second opinion on your diagnosis, I'm wondering if you have had an evaluation at a multidisciplinary healthcare system, such as Mayo Clinic (Here is a link with appointment information for Mayo Clinics in Minnesota, Arizona, and Florida http://mayocl.in/1mtmR63) or at a university medical school.

I look forward to hearing from you again.

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i wish i could read all of this at one time, but i get so tired i need to rest , come back, type, etc. i now am 80 yrs old this has been going on for 3 1/2 yrs. keep getting worse. bbl

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Profile picture for Teresa, Volunteer Mentor @hopeful33250

@hirschho,

I would enjoy hearing from you again after you use your new prescription with the prism. Is the prism in one lens or both?

Will you post an update and let me know how it is working for you?

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I will let you know.

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Profile picture for hirschho @hirschho

PD can cause double vision and mine occurred while I have PD. So I thought it would be useful to mention my optometrist's treatment.

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It is very helpful to discuss treatments. @hirschho.

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Profile picture for windyh @windyh

Is the double vision connected to PD in any way? I am also experiencing double vision & loss of depth perception

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PD can cause double vision and mine occurred while I have PD. So I thought it would be useful to mention my optometrist's treatment.

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Profile picture for windyh @windyh

Is the double vision connected to PD in any way? I am also experiencing double vision & loss of depth perception

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Good question, @windyh. Yes, PD does affect vision, including problems with double vision. Here is an article from the Davis Phinney Foundation website about vision problems with PD,
--Parkinson's and Vision
https://davisphinneyfoundation.org/parkinsons-and-vision/
Here is a quote from the article, "The primary purpose of the front part of our eyes (the cornea, lens, etc.) is to produce the clearest possible image, which is then transmitted to the back part of the eye, called the retina. The retina is made up of nerve cells that communicate via visual pathways using the neurotransmitter dopamine. In addition, we have two eyes with overlapping visual fields, which enables our brain to see the world in three dimensions and process complex visual information. "

How long have you been experiencing double vision, @windyh? Have you mentioned this to your neurologist or your opthamaologist during your annual eye exam?

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Profile picture for hirschho @hirschho

I have had the double vision for a while. I am not very good in remembering time. I notice it when I am watching TV and sometimes see two golf balls when watching a putt for example.
I was diagnosed a few years ago when I had vestibular neuritis and the balance issues did not subside.

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Is the double vision connected to PD in any way? I am also experiencing double vision & loss of depth perception

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Profile picture for Teresa, Volunteer Mentor @hopeful33250

@jatonlouise

You have offered some great suggestions! The only one I would add is to find a form of physical exercise that you enjoy and exercise at least 5 times a week. It doesn't have to be hard, aerobic activity; however, chair yoga or chair Tai Chi are great for balance and help with stiffness. There are free YouTube exercise videos available that are great with seated exercises.

What are you most difficult PD symptoms right now?

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Apathy is my biggest problem at the moment. I am fortunate to have the l-dopa pump so I don't have to remember to take pills 8 times a day. I have physical therapy twie a week I have speeech therapy once a week. I've got something not quite right with my throat and I sound like I've beeen smoking a pack of cigarettes since the day I was born - but I've never smoked. So, I have to gargle with some stuff twice a day; I need to use a nebulilzer twie a day. I'm supposed to do various exercises the speech therapist has given me every day, I'm supposed to doexercises every day. I know why these things will be helpful and hey'll only wowrk if I DO them, but I just want to take a week or tw o vacation from Mr. Parkinson and crelax and catch my breath and then I might be more motivated to get back on the train. Sometimes I combine 2 things I hate to do,and sit at my peddle thingy (sit in a chair and there's some device with pedals that lest you simulaet biking and do a speeech therapy excercise - p ut a cork in your mouth and talk, so I put the cork in my mouth, read whatever book I'm readin aloud, and pedal away for 30 minute and if I think about it I electricute myself at the same time. Sometimes I get knots where my needle from my pump was and there's a device that you put on those knots and it shocks them and threatens them that they better go away because they may have to electfy them more, so I could be doing 3 therapies at the same time for 3o minutes But I sure would like to hit the pause buton on the whole thing sometimes.Appparently PD has no Pause button. I thought it might be fun to do some of the speech therapy while I'm on the bus. But I really want a a Pause button.

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Profile picture for hirschho @hirschho

I have occasional double vision. My optometrist added a prism to my new prescription. I haven't used it yet.

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@hirschho,

I would enjoy hearing from you again after you use your new prescription with the prism. Is the prism in one lens or both?

Will you post an update and let me know how it is working for you?

REPLY
Profile picture for jatonlouise @jatonlouise

My diaagnoosis is Advanced Stage PD. I share many of the symptoms you describe. I'm 80, so I might have had sone of this as a consequence of having so many birthdays. As for your double vision, PzD affects every muscle in ypur bidy, and there are mucles involve in making your eyes play nicely with each other rather than jyst going off on their own. Lots of kids have a "wandering eye"(who goes iff on his own)or a "lazy eye"(who refuses to go along with his brother to look at rhe same things. There arr exercises for your eyes that can help encourage them to work together a bit better and an opthalmologist can give you some to try. (If they work for you, please let your doctor kniw this so if any of his other patients have the problems he can let them know. While it is true that PD can't be cured (yet) and to that extent you do have to accept that. However, often there are things you CAN do to mitigate its impact on you, and that IS something you CAN do about it. Iff you read alot, I would highly recommend gettingbs Kindle because there arr so many features that can make reading easier. 1. You can control both the font style and the font size, which has made a HUGE difference for me. 2. Yoou can control the contrast between the letters and the background, and can even have whiite letters on a black background, and you csn playbaround with these and otger features to tailr the settings that are tge mist comfortable for you. (If you find tthat this us helpful you might also let your doctir know so he can share that with other patients -- also give him the URL for the Mayo PD support group so he can let other patients know that will take advantage of it as they choose. I liive in Germany and don't know enough German (nor do I have the energy to tackle it for thus purpose) so on-line is great! And some folks don't feel comfotable doing things like in-person support groups, and this is helpful to them, too. Let the doctor know that it's miderated by healcare professionals, so if somebody cones up with an idea that may not have merit, the sponsor will gently let them kniw that perhaps setting their hair on fire is not the best approach for treating PD. As for you concern about brain fog and memory, there are some medications that may help mitigate the impact of brain fog and maybe the support group sponsors can describe them and you can ask your doctor about them. And, yeah, it's frustrating and sad and makes me angry sonetimes that my brain doesn't work the way it used to and sometines I am totally befuddled when the pages of something i've printed out fall out of the tray onto the floor and it takes me forever to put them in order. But put it aside for the moment and deal with it another time when the rest if my brain is reporting for duty. I have alson had a chat with my family whuch incudes 3 teenaged grandkids, and explained how my btain isn't working quite right sometimes, so if they notice me doing something that's not a good idea, they will make me aware of it. I won't be offended, but will welcone the help and I won't get mad about if they gently say, "Grandma, are you hungry? If so, I can give you a snack so you won't have to eat the lovely artificial fruit in the fruitbowl. And if I did get mad, I've warned them that they now have 3 grandmas:
1 is their mother's mother (Omi); one is their father's mother (me -regular Grandma) and the 3td one is PD Grandma, who may not act as nice as as Regular Grandma. But both Grandmas
love them. So do what you can to keep exercising your brain when you can and when your PD self takes over for a bit, just fix a nice cup of tea for each of you and keep your fingers crossed that she will go home in a little bit.

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@jatonlouise

You have offered some great suggestions! The only one I would add is to find a form of physical exercise that you enjoy and exercise at least 5 times a week. It doesn't have to be hard, aerobic activity; however, chair yoga or chair Tai Chi are great for balance and help with stiffness. There are free YouTube exercise videos available that are great with seated exercises.

What are you most difficult PD symptoms right now?

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