mental capabilities

[proudest_mama]

Help!

I'm doing pretty good in regards to PD meds. I've been on Mirapex and Artane for two years now. For the most part, I'm hanging in there.

Yes, there are days when my symptoms (tremor mainly, but stiffness as well) seem to be worse but I get through it and then I appear fine.

My mental capabilities, however, are definitely worse. My short-term memory is pathetic. Worse, however, is trying to search for a word and simply drawing a blank. I am truly self-conscious about this because I KNOW (and am not just guessing!) that others have to notice it.

In addition, my throat muscles seem to be closing more as well. The first thing I noticed is that I couldn't eat beef brisket. It's just too dry. I now find so many more things that I have a terrible time eating ... a hamburger, a dry cookie, etc.

In order of what bothers me the most, it would have to be my mental capabilities, specifically looking for a word and not being able to come up with it. That is just too exposed and not something that I can hide as easily.

I need to know if it's due to PD, if a change in medications would help, or if it progressively gets worse and can't be overcome by drugs. As much as I want to know, another huge part of me wants to crawl under the covers and pretend all is fine with the world. Knowledge is power but sometimes I just want to wallow in self pity.

Before I make a call to my neuro, can anyone enlighten me?

Thanks ...
Terri

[K Hamilton]

Mama:

The swallowing problems are probably the PD at work. Before you accidentally choke on something (and I've had some scares this way - or, more precisely, my wife is the one who was scared - I was too busy trying to breathe to get scared), you should have your neuro recommend a speech therapist that can help you with this.

The memory and cognitive problems can be both the PD and the meds - with me, mirapex tends to give me sleep attacks, but requip used to make my brain so fuzzy that problem solving and decision-making went to nil. I have stayed with mirapex, falling suddenly asleep and leaving a finger sitting on the keeeeeeeeeeeeeeeeeeeeeeyboard being less of a problem professionally.

However, all of these deficits can also occur with straight PD, without any meds. Ya' just can't win.

[proudest_mama]

Thanks for responding.

I had a major breakdown via my boss over the phone today. He was quite supportive and will work with me on what I think is best. I then hung up with him and instantly called the neuro's office to talk with the neuro on the phone (they actually do that!).

They just called back a minute ago and want to see and talk to me in person before they consider changing my meds. I have an appt. for Monday.

I'll keep you posted, but thanks, again.

[DJM]

Terri, I too have awful short term memory problems. My kids used to really benefit from it. I'd give them a punishment for misbehaving, like losing TV for a week, but would then forget what the punishment was for! I'd see them watching the forbidden TV, tell the they'd lost their TV priviliges. When they cunningly ask me "Why? What did we do?", I can't tell you how many times I simply couldn't remember their crimes! But I soon out-foxed them by writing crime and consequences down on the family calendar!

I find a PDA a really handy tool to help with lack of memory. If you enter everything into it, every little detail of your life, they can really help those of us who are memory challenged.

Nothing I know of helps with the word search though. Stressful situations tend to make this worse. When I go to corporate gatherings where I really want to be at my best, that's when I start telling stories and forget the purpose of my story half way through. That's when I struggle to find a familiar word like "fortunate", instead describing the word I want like "Oh yes, we've been very...very...you know, like lucky? in selling our homes each time we move." It is frustating and can be embarrassing, but if you're a nice, likable person, people tend to overlook your struggle or chime in with the word (ala the Jeopardy game show!). Either way, they don't think less of you. Most of them probably have the exact same trouble at times because being 40 and over seems to cause these brain blips in everyone.

Having said all of the above, the study drug I'm on - the KW-6002 drug Istradefylline - helped me feel more clear, more mentally sharp from the very start. To paraphrase something Jaye once posted, it lifted the fog off of my brain when I hadn't even realized that I was foggy!

I hope your MDS can help you with your problems so you soon feel more like your old self.

[chksix]

Help!...
In addition, my throat muscles seem to be closing more as well. The first thing I noticed is that I couldn't eat beef brisket. It's just too dry. I now find so many more things that I have a terrible time eating ... a hamburger, a dry cookie, etc.
Thanks ...
Terri
Have a look at "esophogeal dilation". Works very well for me. A gastro-specialist performs the treatment; involves stretching the esophogus back out to a more "normal" size. It sounds rough, but you'll be sedated during the procedure.

[october]

I really know exactly what you mean! I have always prided myself on my intelligence, I am smart. Now, sometimes I feel like an airhead. I work in a technical field, design drafter, where your memory needs to be sharp and mistakes aren't tolerated well. I can't remember from day to day sometimes. Someone will say "How was your weekend?" I won't remember what weekend weather was like, what I did, nothing unless I stop and think about it for awhile. I will cover this up by saying "It was great, you?" Names, they don't come automatic. I am always getting dates confused. It's getting worse, I know it is. I just hope I know when it is time to quit work. I don't want to be one of those people whose coworkers whisper about and say "when is she going to retire?"

My gait is also alot worse. When I walk down hallway, I veer from side to side unless I consciously try to walk straight, and then I am stiff as a board. When I type, I always type multiple letters or gaps where there shouldn't be one, have to always recheck spelling.

I am not complaining, not whining, have accepted my condition, just letting you know that I am getting worse too. I can't picture myself really bad and won't do that. Hopefully that time will not come. Take care proudest mama, I know exactly how you feel.

Help!

I'm doing pretty good in regards to PD meds. I've been on Mirapex and Artane for two years now. For the most part, I'm hanging in there.

Yes, there are days when my symptoms (tremor mainly, but stiffness as well) seem to be worse but I get through it and then I appear fine.

My mental capabilities, however, are definitely worse. My short-term memory is pathetic. Worse, however, is trying to search for a word and simply drawing a blank. I am truly self-conscious about this because I KNOW (and am not just guessing!) that others have to notice it.

In addition, my throat muscles seem to be closing more as well. The first thing I noticed is that I couldn't eat beef brisket. It's just too dry. I now find so many more things that I have a terrible time eating ... a hamburger, a dry cookie, etc.

In order of what bothers me the most, it would have to be my mental capabilities, specifically looking for a word and not being able to come up with it. That is just too exposed and not something that I can hide as easily.

I need to know if it's due to PD, if a change in medications would help, or if it progressively gets worse and can't be overcome by drugs. As much as I want to know, another huge part of me wants to crawl under the covers and pretend all is fine with the world. Knowledge is power but sometimes I just want to wallow in self pity.

Before I make a call to my neuro, can anyone enlighten me?

Thanks ...
Terri

[Mouse]

I'm with you! I took to calling all of the girls in my daughter's troop something like, "sweetie." I made those stand-up name plates for each person in my sunday school class - too embarrassing to forget names of people I've gone to church with for years!

I was on the phone with my husband the other day, telling him who I was with, and my mind went blank! It would have been mortifying, but this friend has Multiple Sclerosis and instantly recognized the feeling, 'cause she does it herself! Almost like you can see the word, or for me, the hole where the word should be! I just laugh it off and claim "holes in my brain.":D

[proudest_mama]

You guys are the absolute best. I knew that all of you would come shining through. Only another person going through the same thing truly understands.

For the most part, my family is in denial. They think that I'm using PD as a crutch to get out of things, blow it out of proportion, or whatnot. Yeah, if only it were that easy. And, let's see, I'm 46 years old. Have I done this in the 44 years before I was dx? I guess it's just too much for them to handle.

Thanks, again, for helping. I'd be a lost puppy without this site.

Terri

[Traveler]

Terri,
I just read your notes about mental capabilities and that you are on Artane for two years. I have seen in a couple of different medical sources that one of the possible side effects of the anticholinergic drugs (which Artane is) is memory impairment. www.medscape.com is a medical site where I had to register as a medical person. (nurse) It is an excellent site to look up any drugs' side effects, patient handouts, etc. To be specific, I had to search Medscape for Artane under the generic name "Trihexyphenidyl". Look under "Label warnings". It says: "impaired memory/mental changes possible" in geriatric patients and "may predispose to glaucoma." This warning is to "geriatric patients" but in a second source, a book titled "The Parkinson's Disease Treatment Book" by J. Eric Ahlskog, MD, Dr. Ahlskog does not recommend Artane and if I remember right, it was because of the memory problems associated with it. Dr. Ahlskog is a Parkinson's specialist at Mayo Clinic, according to the cover of the book. It is an excellent book, but it is not easy reading. Our local Parkinson's Disease support group purchased it for their lending library.

I was on one of the anticholinergic drugs for a short time and found I could not remember things--it was very frustrating and I thought I was losing my mind. I am 63. I am on L-dopa now and find that I have difficulty staying with projects and having the energy to finish things. Most things never get finished--but I've always had trouble with that so I guess I can't blame the PD. I took up crossword and word puzzles in the local paper hoping to sharpen my brain and I'm trying to exercise more. Taking piano lessons, I've heard, is also a good way to train the brain.

It's not a good idea to stop or start any drug without your neuro's OK and could be harmful, so please don't stop taking any medication without their advice as to how to do it. (It might have to be a gradual thing.)
Wishing you the best..............Traveler

[jeri]

you just described my situation exactly! (Of course, I've been known to fall over the pattern in the carpet as well.....) Multi-tasking is a thing of the past and if I don't write it down it ain't gonna' happen. Typing? Two fingers on a good day.

Sorry that we are all in the same boat, but also reassuring. I have gone so far as to ask my Neuro if I am just a hypochondriac. I guess not, unless we all are having the same delusions! :)

jeri

[ramona]

I was on Artane for a while and my two worst side effects were dry mouth and short term memory loss. Aside from those, it did not help me at all. My neurologist said that the memory loss alone was a reason to discontinue the medication, though. I was quite happy to leave it behind, although if it had helped, I might have thought differently.

Blessings
Ramona

[Capri]

Terri-

I find that when I'm undermedicated, I have trouble swallowing, but when I'm stable, I don't have a problem with swallowing at all. (I'm on sinemet and azilect, otherwise known as rasagaline)

It might be time for you to try sinemet -- with all the problems we parkies have, eating shouldn't be one of them!

Good luck!

Diann:o

[chksix]

Talk to your doc about a procedure called "esophogeal dilation" to alleviate your swallowing problems. It is performed by a gastro-specialist. They use a device that actually "streches" your esophogus back out to a more normal size. It works great for me.

[Bella2]

Hi,
I am new here. I found this site whe I googled for information on Managing Dopa Responsive Dystonia through Menopause. As I read through the Thread that Google brought me to....I feel like I could have written them.
If any of the original authors form 2006 are still part of this Forum I would live to hear how things are going now.

Best of Luck and Happiness
Bella2 (Jean)