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Ataxia Support Network

Accidental discovery reveals possible link between cerebellar function and motivation


#21

Ben’s friends welcomes different points of view, as long as they are expressed respectfully. We are also keen to collect and circulate information about conditions, research and treatment, as long as the information is evidence based (main stream medicine). This research article comes out of a reputable medical institution, and as such it’s a legitimate article to post.

Just because someone may find the information in the article disturbing, doesn’t mean that we’re going to take it down. In my opinion, one of the best things about Ben’s Friends is our ability to share, express opinions, explore different points of view, and yes, even disagree . That’s what makes these discussions so enriching, and Ben’s Friends such a special place.

Thanks as always, Alan, for your interesting contribution.

Seenie from Moderator Support


#22

This is excellent research. but confusing medical terminology with " plain language" by lay folk reading scholarly articles and then looking for a fight is when bad things happen.
O:-)O:-)O:-)There is no academic medical setting anywhere in the world who does not believe “mental issues” have an organic cause. That in of it self why the practice of psychiatry has morphed into psychopharmacology something entirely different. “Motivation” is a medical terminology referring to brain chemistry not at all unlike “fight or flight”. It has nothing to do with whether one is motivated to overcome their condition ( whatever it may be.

To take offense when non is intended is well, offensive. So as Wrangler of this outfit let me say this in as perfectly clear language If you are going to call someone out make damn certain you know what you are talking about.

That clearly didn’t happen here. What was missed (especially if you follow the bibliography) is that some very simple and effective treatment for several types of ataxia is very close. A medication that stimulates brain glucose could effectively treat not only bipolarity but ataxia as well.

It may well be that many didn’t fully understand the article (I didn’t the first time through and I have training) but discussion not defensiveness and personal attacks would help clear it up.

Not knowing or understanding something is fine acting ignorantly is not. I have zero tolerance for ignorance and simple bad manners.

I can’t imagine what is disturbing about the finding from Stanford (one of the leaders in ataxia research) I would think one would be shouting from the rooftops that one more piece of the puzzle is found.

TJ, Community Manager


#23

Thank you for posting this research and please continue to post any reputable research that you think might be relevant. I agree that the terminology is a mite confusing but it is obvious they are not talking about motivation in the sense of wanting to do something. Motivation here seems to mean the (unconscious) steps which the brain has to undertake before a movement is made. It is wonderful that these steps can be revealed through such research and could help people with our condition. For instance, I have SCA6 and from experience I know that I am particularly bad at movements such as walking through a door and immediately turning a corner - it means I frequently bump into the door frame! For me such movements need a bit of extra care. It would be easy enough to email the researchers and ask them what they mean by motivation. They would probably be interested in the discussion on this website sparked by their research.


#24

I hope you’re not going to quit interacting here. I’m in China at the moment otherwise I’d send you some comments made in 1904 by the doctor who had a patient come in, fail all those neurological tests that indicate our various ataxia symptoms … the doc sent him home with a request to come back in four months. When the patient returned, he was able to do the finger-to-nose test PERFECTLY! The doc asked, “What’s happened in four months?” The patient replied, “Oh, you told me I failed. So I went home and practiced over and over and over again.”

Please lin-da, focus on the strength of your brain to be incredibly strong to bring even small, incremental improvements to your daily life. I’ve as recently as this week said to my husband I have to start up my fine motor skills practice again. And before coming here this year I worked six days a week on my balance. Why? You take your life in hand each time you cross a street over here, so I had to make sure I wouldn’t go sprawling off a curb. I’ve had one tiny stumble … walking in a karst cave! And I didn’t fall on my face!

So please, don’t give up on this forum. You’ll find encouragement along your journey … and you’ll offer encouragement to others along their journey. judith


#25

thank you for your response senior48. I took offense to the article because of the title that there was link between lack of motivation and ataxia. I do not lack motivation, and my falls, some of which were serious, were caused by the ataxia. Ataxia is a disorder of the brain and is not like a test that you can study for.
I guess I’ll still scan this forum but I’m not sure I’ll be as active as before.


#26

Don’t give up coming here or even reduce because you never know. Any informational posts might just have the information we’re all looking for.


#27

I know…titles can be misleading all too often. I think scientists have difficulty quantifying something so intangible as motivation. Plus, they are working with mice, not humans. Though our systems may be similar, humans have been endowed with oh, so much more…which is evident by how much we need one another to maintain such things as motivation. One of my dearest friends is now close to deciding not to do anything in light of the docs finding cancer has spread. I’m way over here in Kunming…but in my head I can hear him saying three words that have always encouraged me no matter what I’ve faced in the years we’ve known each other, “Know you’re loved.” That’s motivation enough for me on my journey. May you have someone who stands as your cheerleader on your journey. judith


#28

Lin-da,

There is the misperception that many (healthy) people believe that if one is motivated and maintains a positive attitude, one can overcome any disability. We all know that just is not true. After all, The brain can’t do what it just can’t do. I believe that healthy people like to believe this myth because it helps them deal with their own fears of being disabled. Because we all know they would work hard and have a good attitude.

I find this really offensive since 1) it minimizes my problems, 2) it insults me as well as how hard I have worked, and 3) it is just not true.

I think the title of the article reinforced that offensive myth. I do understand why it upset you, since I find that myth offensive, too.

I even refer to a dog described in a TV show as F***ing Lulu because the stupid dog, Lulu, overcame a disability with hard work and a good attitude. I actually like dogs, but not this one!

As I commented before, nobody seems to work harder than this group of people. The things that healthy people do are really easy compared to what we do.


#29

I believe Linda4 makes a very good point here. It is very easy to stand on the outside and pass judgement, especially for ‘invisible’ conditions which many of us have. Would they say that a leg amputee lacks motivation because they cannot run, of course not. They can physically see why that individual cannot run, so the expectations of that person’s abilities are less due to their known disabilities. Now take an invisible condition, there’s no outwardly sign of an impediment, so that must mean there’s nothing wrong. If there’s nothing wrong then that must mean it’s a motivational issue. Many years ago if an individual could not add 1+1 they were just dumb, now there’s a bit more understanding of intellectual disabilities and again although for some there are outwardly signs of an impairment for others those signs may not be so clear cut.
I know for myself these judgements were supported/perpetuated by the people who know about such things, the dr’s. ie ‘If the dr’s can’t find anything wrong, then there’s nothing wrong…’ but this couldn’t be further from the truth. Often it is easier to say “It’s a motivational issue” than for medico’s to admit that their knowledge is lacking and that they do not have all of the answers.
I too have at times perceived this as an insult, but in saying that I have pushed myself to my breaking point and have proven, at least to myself and those within my inner circle, that motivation is not my issue. I have had years of misdiagnosis and misdirection, so I suppose I could say I’m ‘use to’ (well, as ‘use to’ as one can get) dr’s insinuating that I am the issue, rather than an actual health condition. In a way, I’m lucky, if you can call it luck, but the dr’s could do a scan and get physical images showing my situation is physical and not simply a motivational issue. But I do believe that without those images the dr’s would still be appointing blame.
Blame is easy, ownership is hard.

Merl from the Moderator Support Team


#30

I’m more inclined to spend time deep in thought rather than actually being a doer. That could be perceived as lack of motivation to get up and actually do something physical. But, experience tells me after pushing myself to take part in normal everyday activities, I’ve come to realise what actually makes a positive difference and what actually takes me days to recover… We don’t all have to cope with exactly the same challenges, and it can be all to easy to pass a flippant remark saying ‘just go out and have a change of surroundings, you’ll feel so much better’. Cerebellar Ataxia can be very debilitating in various ways, a person comes to realise what is too taxing.
A couple of days ago my Brother called by to pass on amazing news, while he was here he remarked on how easy he’d found it to clean the grout on his kitchen floor…:hushed: We were standing in the kitchen, and I have admit the grout desperately needs attention, but I wasn’t exactly happy to have it pointed out at that particular moment. Less so to have him say elbow grease is the answer :face_with_raised_eyebrow: I’m more of a researcher when I need to solve a problem, so I looked online :wink: Who knew that Baking Soda could perform the same miraculous results, with less strain on elbow grease :+1:
So, after some successful trial patches yesterday, today I fully intended to have another go. That was until my washing machine squealed and rocked around the floor. A thick mattress cover had caught on the rotavator and the spin cycle failed :woman_facepalming: After manhandling the soaked mattress cover out I was exhausted, and after trying to wring water out by hand, and then putting the cover back in the machine for optimistic spins which failed, my motivation today has gone for a burton :wink: xB


#31

Yes … well put … just a few days ago I spoke with a friend whose had a stroke recently … she expressed frustration as she’s hit a plateau. I mentioned to her it’s difficult when our brain is injured as we cannot see the progress like we can when we’ve broken say, an ankle. I find humor helps me keep an even keel over my emotional well-being and motivation. I mean, it’s definitely a comedic event to brush my teeth manually, what with my brush careening out one side of my mouth and up and away into a nostril! If I became upset each time, well, a downward spiral might be the result. So, I laugh and carry on with my day.

I was told last November that my chest pains were psychosomatic. Right. Until a month later, the doc ordered one last test and we found out I have an anomaly—myocardial bridging—since birth! My husband quipped “Well, that’s not psychosomatic…!” Yep! Docs don’t always get it right. jd


#32

“Psychosomatic” don’t we just ‘LOVE’ that word??? NOT. It’s like we choose to be here, who on earth would be crazy enough to want ‘This’? Not me, that’s for damn sure.
I question myself everyday, so if they want to question this reality, then here, fine, take it, you deal with it. If they had to manage this for one day, just one single day, they’d be questioning themselves too. The problem is though, they never have days like these and probably never will and that is part of the frustrating bit. The few people who actually ‘get it’ are either very direct family (Husbands, wives and parents)because they see it directly, or patients themselves who live it.
I have an older nephew who decided to give me a hard time one day, one BAD day. I wanted to rip his head off, but didn’t have the energy. On another day he was really unwell and I fed all of his own lines back at him and SURPRISE, SURPRISE, he didn’t like it one little bit and I, not too subtly either, reminded him of his own comments. He got the message loud and clear. He hasn’t made any smartarse remarks since.
I do try to use humour, not very successfully. Or say things just to write symptoms off or make light of them. My wife can see through my little charades though, so they don’t work too well on her, Damn it. My combination problem though is that I’m a bit like Beryl, when I can’t do I sit and go into deep thought, often deep negative thought. Which damn near sends me crazy, then add external judgement to the mix… ….I can tell you, nobody wants to be in my head. Not even me.
Now I try to just ‘take everything with a grain of salt’ if the task gets done. Well done. If the task doesn’t get done, I’ll ‘try’ again tomorrow. Some get it, some don’t, I don’t care anymore. I have to manage all of this for me, not them.

Merl from the Moderator Support Team


#33

Try this to clean the grout. I use in the shower to clean the grout and it works just fine. In fact, you might get some stains from cleaning the shower grout. To remove any stains, just spray them with Hydrogen Peroxide [the antiseptic not the hair stuff] and stains just disappear.

To clean grout: Just spray the area with bleach and leave it on for about 1/2 hour. Then rinse off the area with plain water. No scrubbing necessary. :grinning:

EDIT: Obviously do this in a well ventilated area or only do small areas at one time.


#34

:+1: :slightly_smiling_face: I’ve used ‘Flash with bleach’ successfully in the shower area where grout can easily be covered with black mould when left wet. Eventually it dawned on me it was well worth the time and effort to dry the shower area :slightly_smiling_face: I don’t know why it never occurred to me to try this treatment on the kitchen floor :thinking: I’ll give it a go before investing in an extra large box of Baking Soda :wink: xB


#35

thank you Linda4 and Merl-your support means a lot. My MRI scans show that my Ataxia is not as simple as a “lack of motivation” but I found it so offensive that some researcher had the gall to even imply that there was a link. The blame game needs to stop. Merl, have you been able to get an MRI?


#36

I never thought I was lucky, before, that my ataxia happened after brain surgery, because I missed out on the mis-diagnoses and blame. How lucky am I!

I want to talk a little more about my theory that healthy people like to blame us for not working hard enough or having a good attitude. I believe that most healthy people live in fear of becoming disabled. They like to think it cannot happen to them. This is denial! It is a defense mechanism because it allows people to go on despite their fears.

Saying that the problem is all due to the disabled person supports the healthy person’s denial because it allows them to believe it could not happen to them.

Knowing deep down inside that disabilitycould happen to them, they support the denial by blaming us for our response to the disability. They do this to make themselves feel better. They are so busy making themselves feel good, they do not think about how insulting it is to us.

Remember, too, that medical professionals are human, too, and they live in denial about the possibility that they will be disabled as well as the possibility that there is a lot they do not know.

I spent a long time living in denial. Frankly, I was a lot happier that way.


#37

lin-da – I honestly believe you’ve misunderstood the statement about a lack of motivation.

In the brain, in neuroscience, motivation is a desire to perform an action is usually defined as having two parts, directional such as directed towards a positive stimulus or away from a negative one, as well as the activated “seeking phase” and consummatory “liking phase”. This type of motivation has neurobiological roots in the basal ganglia and mesolimbic, dopaminergic pathways.

Activated “seeking” behavior, such as locomotor activity, is influenced by dopaminergic drugs, and experiments reveal that dopamine is released during the anticipation of a reward.

When your brain isn’t working correctly, when the cerebellum is damaged or wired differently then average than you may not have the same reaction to the release of dopamine in the brain – the dopamine may not even be releasing in a normal way. Therefore, the motivation created by dopamine release is lacking.

It’s not about your emotional willingness or strength do something that’s lacking, it’s the chemical reaction in your brain that’s lacking (or different) that’s creating a lack of what would be considered “standard” motivational reaction.

I would hazard to say another example would be a clinically depressed person. They often lack motivation to do every day things, not because the can’t or don’t want to, but because the dopamine in their brains isn’t being used correctly (many anti-depressant drugs work on dopamines and seratontins) making it impossible for them to function normally.

To me, this most recent research is saying ataxia may have a link to this same issue of brain chemistry and that the cerebellum is actually much more important than first thought.

azurelle


#38

I’m not a scientist or anything like that. Just a guy with Ataxia! To me, motivation is the desire to do something. If I can’t do that motivational thing, I’ll do SOMETHING. I’ve always been an optimistic person so I’ll never give up. I go to a gym 3-4 times a week for 1-2 hours each time. I really think that this is the reason that I still have full use of my arms and legs.

I know that’s not a cure, but I’m of the opinion that it is VERY important to keep active both mentally and physically. It’s very important to keep your muscles and joints strong and fluid. I’ll even go as far in saying that exercise might help to restore some lost ability. Hey, it’s worth a shot! What’s other choice do you have?

Yesterday, the US Government health section came out with an updated guide. The suggested that adults do 150 minutes of exercise each week. This doesn’t mean weight lifting or running, could be going for a long walk or even vacuuming. Just do something that will keep your muscles and joints active and fluid. You’ll be surprised what you can do even though you think you can’t.

I’m not trying to be a Pollyanna. I’m 72 years old and just trying to help. Also, make it a part of your daily thing each day to exercise. Not just here and there.


#39

Thank you Linda4. I agree with you and have seen this a lot. I cant tell you how frustrated I am with the blame game and being told what I should be doing, how I should be handling things. Thank you for your support. I think even some people who are disabled who are able to do a certain amount think they are "better’ than other disabled people who cant do as much. And it’s so frustrating.


#40

perhaps azurelle, but I didn’t get from the article that he was talking about brain chemistry-perhaps he was. ifyoure going to write an article you need to be clear about what you’re talking about. but thanks for your input.