Parkinson's Disease

[Harry]

Several years ago, I did an "Ask the man with Parkinson's" thread. In light of recent events, and not just because I'm an attention whore, here's another one. There have been no new developments as far as treatments go, at least to my knowledge, but there has been some progress made in researching causes and possible treatments. My sister has been diagnosed with Parkinson's, and we will be applying to participate in a study regarding genetic predisposition to the disease. As far as I know, Parkinson's, while incurable, is not a fatal disease but contributes in some way to contracting diseases which can be.

[Wolf Larsen]

How much tremor do you have?

[Harry]

I've never asked. I didn't know they had names. Mine basically effects the whole left side of my body.

[Carolia]

What is your medication schedule like? My mom has Parkinson's--she was diagnosed while I was in college. Her neurologist told us last week that there's a new form of Carb/Levo coming out (it was supposed to be out in March, but FDA delays) that will give longer results. Right now, she takes it every two hours during the day, with Azilect as a booster of sorts, and Galantamine for memory issues that can come with the disease. Her tremors are very well controlled now, though. We have video from when she was only a few years into diagnosis, back when she could still get around quite well (scoliosis and arthritis are working against her, too), and it's amazing how much better her Parkinson's tremors are controlled today even though the disease had progressed further.

[Chacoguy]

Thank you for reviving this, I've been told that my Dad has Parkinson's, but he's got different symptoms than I would expect, but what do I know? His primary symptom is that his mind fades in and out, like a distant radio signal.



"Ya know what I remember?"

What's that. Dad?

"That time when we went to the.....orange.....................Sorry."

It's Cool, Dad.



That was last year. He's gotten worse since. He gets lost in his own home.



Fuck.

[Harry]

I take two Carbo/Levo three times a day, Azilect twice a day, Requip at bedtime, and a longer acting Carbo/Levo in the evenings. The reason for the evening Carbo/Levo is that my neurologist wants to get me off the Requip completely, primarily because of the side effects.

[Harry]

Originally Posted by Chacoguy

Thank you for reviving this, I've been told that my Dad has Parkinson's, but he's got different symptoms than I would expect, but what do I know? His primary symptom is that his mind fades in and out, like a distant radio signal.





Fuck.

Chaco, that sounds like dementia to me, but that is also one of the signs of Parkinson's.

[Chacoguy]

If it doesn't give you guys too much difficulty, can you guys that are more familiar ad links to the medications and abbreviations?


I can't possibly imagine anyone stupid enough to seek any actual medical advice here; however, there's a studio audience playing along at home.

[Jaglavak]

Damn, bro.

[Harry]

Sorry...I should have thought of that. The website for the Mayo Clinic is good, as is WebMD.

[Chacoguy]

Originally Posted by Harry

Chaco, that sounds like dementia to me, but that is also one of the signs of Parkinson's.

Yeah, he's seeing a dementia specialist. While he doesn't shake, per se, there's no way he could tie his shoes or button a button.

[JackieLikesVariety]

some patients never have tremor but instead they just freeze. some have resting tremor, some intention tremor (when they are trying to do something)

since it attacks your nervous system, which includes your brain, pretty much anything can be a symptom. vision problems, for example. each patient is unique.

[Anacanapuna]

I have deep respect for anyone who pushes ahead through any disease that makes your body slowly betray you. It must be difficult to not spend your life being angry and self-pitying, but again and again we see examples of people suffering gradual but inexorable breakdown, yet maintaining a positive attitude and actually accomplishing things the rest of us think, "Yeah, I'd like to do that some day."

Harry, the clarity and wit of your postings here are even more enjoyable in light of your condition.

[Dragonlady]

Originally Posted by Anacanapuna

Harry, the clarity and wit of your postings here are even more enjoyable in light of your condition.

I can assure you that he is even more witty and charming IRL.

[Radical Edward]

Harry is the awesomest awesome who ever awesomed. I appreciate my special pen now even more than I already did.

[Harry]

Interestingly enough, holding tools reduces the tremors. Learning to make pens came after the Parkinson's diagnosis. Today I read that Rob Schneider is blaming Robin Williams' suicide on the drugs he was taking for Parkinson's. The specific drugs aren't given in any article I was able to find, but of the most common, only one has thoughts of suicide given as a reported side effect, and that is the combined carb/levo drug Sinemet. That is also not generally prescribed in the early stages of the disease, in favor of newer, safer drugs. I've been on it for several years, but my sister is not on it at all. We are seeing the same neurologist, but as Jackie pointed out, it's as though every individual has a different disease.

[jali]

My mom had no tremors, but would freeze and fall and injure herself.

She also has a constant and uncontrollable hum for the last few years.

[Carolia]

My mom also has a brother with Parkinson's--they did a sibling study well over a decade ago. He has more of the rigidness in his facial expressions than Mom does, and his tremors seem to be harder to treat, even though they are milder unmedicated. His balance is worse than hers, too--Mom has more issues with the scoliosis than the Parkinson's with her walking.

Have you had a loss of your sense of smell? Mom has recently realized how little of her sense of smell is left, and how it's affected what tastes good to her. While she still had issues with the food at her assisted living place (part of that is being a Southerner stuck in south Miami, where the food is entirely different), she's realized part of it is the lack of that sense.

[Wolf Larsen]

My dad was on Sinemet.

[Harry]

Carolia, losing the sense of smell is very often the first symptom of a Parkinson's diagnosis. I lost mine years ago, but some people never lose theirs. My sister will come for a visit and about the first words out of her mouth are "You need to change the cat boxes." I have some facial rigidity, but what's going to suck the most is losing my voice to what they call the Parkinson's Whisper. If I can't talk, I can't teach, and that is the prime motivation for getting out of bed and dressed for a good portion of my year. I think if Sinemet was going to cause me to kill myself, I'd have done it years ago. My first neurologist had me on three times the dosage prescribed by my present doctor.

[Khampelf]

For the last three years and better, I've been providing near to 24/7/365 care for a 68 year old gentleman with Parkinson's disease. It's been a challenge but we're in a pretty comfortable place, considering. He takes both the immediate and extended release Sinemet, and has a deep brain stimulator. He's still sharp as a tack, and speaks so well it's a shame he often can't talk. Sometimes we have to rely on thumbs up or down to tease out of him what he's wanting. His diskinesia(sp?) (involuntary muscle movements) varies hour to hour as he surfs his waves of brain chemicals. I don't know how much to classify as dementia, but he does get into moods where he's determined to accomplish some task, doesn't want help, but wants me to be there to watch him do it slowly and badly because he doesn't have the co-ordination for it. Frustrating, horrible, slow disease.

[Khampelf]

We've found that overdoses and underdoses of Sinemet have much the same effect regarding diskinesia. It's very hard to tell when it's needed and when it's already too much.

[Carolia]

Harry, Mom's voice is very quiet, but it's hard to tell if you've known her for a long time because she's always been a quiet person (I took after Dad). The only time I really notice it is in doctor's appointments. I often have to repeat what she says because the doctor can't hear her. It might be harder if I were still a teen or Daddy were still alive, because she was certainly not shy about yelling at us then! I don't think she has much facial rigidity, but then again, she wasn't one for huge facial expressions to begin with. I know her smile is a little bit smaller, and one of her eyes doesn't open as far as the other one, but she's mostly the same expression-wise. I really think being a slower, quieter person than Daddy or I has helped her not feel as pinned down by the disease as she could.

[Harry]

My voice has always been low and soft, but now it's hard to hear me across a restaurant table, let alone the back of a classroom. It sounds the same to me as it always did.


@Nummus...thank you for your thoughts. And everyone else, of course, but you seem to be new, so we have no history of interaction.

[Nummus]

Originally Posted by Harry

My voice has always been low and soft, but now it's hard to hear me across a restaurant table, let alone the back of a classroom. It sounds the same to me as it always did.


@Nummus...thank you for your thoughts. And everyone else, of course, but you seem to be new, so we have no history of interaction.

[Bolding added]

Ha! June 1999 join date, so not too new (thanks Feeny).
Wish texting had been available when my dad was around. He would get so frustrated at not being able to be heard clearly.

I just use texting for short, to-the-point interactions. Are there available the sorts of smilies that are just to the right of the textbox in which I am typing? If not, perhaps some development could be made in that area (as well as others) to enrich the texting experience.

Currently just started reading Oliver Sacks' book An Anthropologist on Mars. In it he repeatedly makes the point and investigates how the brain finds and/or creates pathways to maintain its complete sense of self. As he says :

"Defects, disorders, diseases [...] can play a paradoxical role, by bringing out latent powers, developments, evolutions, forms of life, that might never be seen, or even be imaginable, in their absence. It is the paradox of disease, in this sense, its 'creative' potential, that forms the central theme of this book."

Sorry for talking your ears off (typing your eyes out?). Just wanted to let you know that I know that, in many and diverse ways, we're all in this together.

Also. Pens?

[eleanorigby]

Sorry to hear this, Harry (and all those so afflicted). Here, use the tool that was built and is maintained by your tax dollars:

MedLinePlusParkinson's. No ads, it's peer-reviewed, and updated quite frequently.

My grandfather had PD. I often wonder if I'm going to get it or the dementia that my great aunts (other side of family) had.

Either one is a bitch.

[missred]

Sorry to hear this, Harry.

Do you take any special precautions that you take to avoid injury when you have a tremor?

[Harry]

missred, I always have tremors. They vary only by degree. When they get really bad, I stop and rest. As I've already mentioned, using tools seems to slow them down. I don't know if that's because of their weight, or because of a shift in focus. Perhaps both...

rigs, my dad had either essential tremors or Parkinson's...no one would ever say specifically, and my sister has PD, as already mentioned. If there is a genetic predisposition, it doesn't seem to skip generations. On the other hand, none of my other siblings have reported having tremors of any kind. It seems to be somewhat of a crap shoot.

An interesting point that you made, Nummus... I mentioned that to my first neurologist, when she commented on the quality of my drawings. I drew a lot in grade school, then didn't start again until after I was diagnosed with Parkinson's, almost 50 years later. Are you familiar with Robert Johnson's deal with the Devil that made him such a great blues singer? Pens, you asked? Yes, I make pens. Linky...

[MsWisher]

Originally Posted by Harry

rigs, my dad had either essential tremors or Parkinson's...no one would ever say specifically, and my sister has PD, as already mentioned. If there is a genetic predisposition, it doesn't seem to skip generations. On the other hand, none of my other siblings have reported having tremors of any kind. It seems to be somewhat of a crap shoot.

Have your doctors suggested a connection between essential tremors and parkinsons?

I have no family history of parkinsons but I do have essential tremors and I suspect my mother does as well. Both of my kids are now showing signs too in their early to mid 20's.

Looking back at handwriting samples I suspect I've had them all my life but everyone just assumed I was too lazy to write properly and generally clumsy. I'm not medicating yet but every month I get closer. I find the opposite impact as you with tools, the more I concentrate on something the worse the tremors get. The only way I can reduce them is sufficient sleep, regular breaks and limiting the activities I do that require close work. I don't do needlepoint anymore and I endeavor to type as much as possible vs writing. Oddly though walking over varied terrain seems to reduce the tremors in my legs, basically the exact opposite effect of using my hands.

[Khampelf]

I dislike being negative and all doom and gloom, but the issue we've found with texting or even typing on a regular keyboard is that by the time the diskinesia/Sinemet cycle is too bad the hands are too uncoordinated to type. We do a lot with Thumbs up/Thumbs down, while I run down a list of what I think he wants. Eventually, I will be running down the alphabet, waiting for a squeeze on my hand at the right letter. At this point, his handwriting is marginally more legible than his speech is understandable.

I do thank you, Harry for the info on tools helping. It's something to think about while I duck wildly swinging power tools. See 'determined' moods, above.

[Harry]

I didn't mention that a relatively brief post like this one may take several minutes to make. Besides the difficulty in forming coherent thoughts, my keyboard skills have pretty much regressed to the hunt and peck method. Since I abhor misspelled words and the appearance of disjointed thinking, I'll go over this several times before I hit "Submit," and there may still be an error I've failed to correct.

MsWisher, I've never asked the doctors about essential tremors, so the best I could offer would be whatever Google turns up. Sorry.

[Khampelf]

Your posts are always worth reading, thanks for the effort you put into them.

[Chacoguy]

What he ^^^ said.

[missred]

I'm just glad that you took up drawing as therapy.

[Nummus]

You do quite a good job, Harry. Your posts, wherever I run across them, look to be models of clarity. I re-read my posts several times as well, due to feeling the same way you do.

ETA - Cool! No Gaudere's Law exemplification.

[Harry]

Thank you, everyone.

[Wolf Larsen]

Originally Posted by eleanorigby

Sorry to hear this, Harry (and all those so afflicted). Here, use the tool that was built and is maintained by your tax dollars:

MedLinePlusParkinson's. No ads, it's peer-reviewed, and updated quite frequently.

My grandfather had PD. I often wonder if I'm going to get it or the dementia that my great aunts (other side of family) had.

Either one is a bitch.

Take the dementia, it's way more fun.

[Harry]

Probably not to the people who have it, Wolf. I'm disappointed in you.

[Wolf Larsen]

Having known people with parkinson's and people with dementia, the people with dementia seem to be happier.

[Harry]

Alright. You have the advantage of me...my experience with dementia is limited in scope, and the few suffers I've known have seemed more confused than happy.

[Wolf Larsen]

The other thing that really seems to suck is being a stoke victim. Mrs. Larsen has strict orders that if I stroke she is to make them give me the clot buster. It will either cure or kill me and I'm ok with either outcome. (If it's a clot stroke, the clot buster will fix it, and if they give it to you early enough you'll be ok. If it's a bleed out stroke, it kills you dead.)

[Harry]

Maurice Chevalier is supposed to have said that getting old may not be so great, but it beats the alternative. When my Dad was in his 70's, he said he wasn't quite sure he agreed with that.

[Chacoguy]

Aww, Man.

[ryevermouthbitters]

I've been reading this thread but I don't have anything to add. I've been alternatively impressed, sad and fascinated by what I'm reading though.

[Harry]

Here is some information a fellow veteran made me aware of...it may be beneficial to others reading this thread.

Parkinson's Disease and Agent Orange