32 Comments

An interim analysis after 119 respondents show that 12 pwMS (10.1%) have clinically significant hoarding. This is about twice the background rate in the general population over 70. It looks like my clinical observation is correct.

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Please consider the difference in hoarding vs. clutter due to energy deficiency in your research - I would suspect the latter is a lot more prevalent, also when looking at the above comments.

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I wouldn't consider myself a hoarder but my house does have a lot of stuff which needs sorted and cleared. It takes a lot of energy to even sort one cupboard never mind carrying the stuff to the bin or go to the dump. Fatigue and walking/balance issues make this very difficult. It's easier to pile it were you are but then never gather the energy to sort the pile and so the circle continues....

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Not that extreme but definitely in the category…

I cant throw things out because of the MEMORIES!

Clothes that I haven’t worn for 20 years… old uni notes with pictures and comments in them… but then my dad definitely has that tendency too.

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Wow, I am fascinated to read this! I had no idea this could be a feature of MS. I am the exact opposite. I despise clutter, messes and dirt and do not keep unnecessary objects, clothes, memorabilia etc., in my home. I have been teased about this my whole life. Some describe my home as "clinical" or "antiseptic", said with humour. or at least I hope so. I do have colour and pieces of art in my home etc., but I cannot abide by messes, clutter or dirt. I am having difficulty keeping my home as clean I would like due to fatigue and other MS symptoms and that is causing me deep distress. My house is tidy but the challenge now is in the cleaning. I imagine the distress of not being able to declutter or get rid of objects which leads to hoarding may be similar with the distress I am having of not being able to clean my bathtub etc I know the simple solution would be to hire a cleaner, but I cannot afford a cleaner. I cannot afford a modafinl prescription that was rx'd to try help with fatigue. Being on a tight budget and on disability sucks! You have to choose between food and paying bills vs. medicine and help in the home. I cannot imagine living in a hoarder situation and my heart goes out to those who do, as I can only think it must be agony to live like that. The struggle must be very intense.

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I think the financial aspect of this is really important.I was never a hoarder, but I used to keep everything in case it was worth something. But once my finances were more stable I was able to let things go, I guess because I knew I could replace them. And I am lucky enough now to be able to afford a cleaner.

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While I am not a hoarder, I find it cognitively difficult to decide what to pitch and what to keep. (Old clothing is better than new! Nostalgia - what to keep for kids..etc) My head begins to spin with constant head turning and eye movement. I do find visible clutter overwhelming. Sorting through piled up papers, digital media etc requires physical energy I don’t have. I used to have a spates of energy to tackle this, but those times are becoming increasingly rare. I also find I am becoming angry with “normies” leaving clutter and mess as well as them moving things without telling me! I don’t know what it is, but I call it brain overload!

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I know my clutter is related to lack of energy to tidy and clear out. I have had periods of obsessional rumination which is a feature of OCD. With more recent brain fog and lack of concentration and focus I have found this tendency less. Literally I forget what I was worrying about. Every cloud etc..

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I’m definitely not a hoarder - in fact I’m the opposite - clearing stuff every month by charity collection or recycling some other way. Can’t say I was aware of the association between hoarding disorder and MS

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I just finished typing a similar comment to yours, before reading the others. I find this topic fascinating because like you, I had no idea of this association between hoarding disorder and MS. I guess there are 2 camps lol

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If there is a link between hoarding and MS, does it depend where lesions are situated in the brain as to whether behaviour might be affected?

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I also don't hoard to the level that my house is hazardous but every inch of storage is used and every surface has something on it. I live on a tight budget and am frightened to get rid of anything I may find useful, can't afford to replace or has a personal reminder for me.

I'm being forced to downsize at present and finding it extremely difficult and stressful. I never imagined it could be related to my ms, I thought it was down to living on a low budget.

Thanks Prof G for giving me a reason my family might be a bit more understanding about.

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I'm not a hoarder but I do find it difficult at times to move things on or even clean up after myself. Cleaners come to my house about once a month, but they never throw anything out, just vacuum, dust and wipe. Sometimes my gait impacts on my spinal flexibility and carrying stuff is becomes a balance issue. Same with cleaning - a repetitious action just hurts very quickly. In the end I don't throw old clothes out because they're not worn out but just unfashionable. Sometimes after a massage that involves stretching my obliques, or a Pilates class that uses exercise that suit a scoliosis patient, I get a window where the stress on my multifidus and erector spinae group is relieved, I become flexible enough to tidy up after myself. usually, it's a choice between mowing the lawns or tidying the house, doing everything is too much on my back. I've not obsessive compulsive at all. I live alone and have no expectations that anyone will lift a finger on my behalf.

Be careful that your survey doesn't create a pigeonhole when none existed before.

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I do hoard, but not to the point of saving food wrappers and things I definitely don't need to function well. It seems to be more utilitarian for me: I save a lot of things that help me remember the past because my memory is failing, and there are things that help me piece together my family tree, and there are also quite a few things that have sentimental value for me. But without regular access to a therapist or psychologist they help me cope many days. In addition there is another facet of the hoarding that deals with the virtual world instead of physical things: I have an inordinate amount of emails, and more documents cluttering up my hard drive then I could ever deal with in 10 lifetimes. I am hyperaware of all of these facts because hoarding in one way or another runs in my family. My grandmother, who had severe bipolar issues, was very much a hoarder, and it took me and my mother almost a week to clear out her apartment when she passed. The apartment was only about 200 square feet. She had saved things like dozens of the plastic squares for keeping loaves of bread packaging closed. She was such a sweet and caring lady, and I know the manic episodes made much of her life untenable. She was only 5' 2" and about 115 lbs [sorry my command of the metric system is abysmal], but she would fill a shopping cart with Sunday edition newspapers at the local grocery store and trudge back to her senior community to pass out the papers to the residents too feeble to make the trip themselves. Tenacity and working off nervous energy from mania can be quite a constructive workaround sometimes. My brothers and I all have inherited some degree of manic depressive issues, and one of my brothers has a terrible time with hoarding. It really impacts his life and his relationships, and causes him and those around him no end of emotional strife. MS has really exacerbated the mental health issues for me, and has increased the hoarding and emotional dysregulation as well, which is much different than before MS, as I had always been the least affected by the bipolar issues out of the three of us brothers. I have been working diligently--at least when I am able--to resolve many of these issues and declutter as much as possible when I have help, which is at a premium these days. I know I need to do a better job because my family would need to be able to get to my vital papers and information, physical and virtual. Otherwise if anything happens to me it would be a disaster; mostly for them. There's no safety issues for me because everything is in storage. But it is expensive.

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ho my God! I been suffering from ms 23 years and i was fine first few year but now I’m terrible. Husband his as bad but doesn’t have ms he is just lazy.

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Not a hoarder, but I do recall in mid teenage I developed OCD traits that were getting in the way of normal living. Of note, this happened a couple of years after a short illness with tonsillitis (I used to have tonsillitis yearly, but that one was the worst of them as I lost weight and it lasted a couple of weeks, maybe more, and it was the last one as well; in hindsight, I suspect it was a case of mono). Those OCD traits were also the first sign of various psychiatric conditions that would come and go: social anxiety, depression, emotional imbalance reminiscent of a combination of BPD and bipolar (but neither fully fit the symptoms I was experiencing)...

Might be more useful to see how prevalent psychiatric disorders in general are among the MS population and whether there is a pattern (which are more common, is there a transition between one to another or a cycling between them?)

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I was 3/4 through the survey, switched to the EDSS link and it lost all my answers!

I’ll try and have the energy later…

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I have put a warning into this section so this doesn't happen to other people. Thanks

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Not a hoarder but I do get emotional attachment to certain objects. So I can remember which beach a pebble, that one of the children may have brought back from a holiday. I allow myself a small space for these things. The children are now adults in mid 30s and 20s, I’ve got a tin with their special childhood drawings. I couldn’t throw them. Interestingly, in our mid and late 60s we discuss downsizing. We try to set a target of cleaning out drawers etc. Today was donating Xmas decs, all with memories attached. But I did it, and felt a sense of loss. I hate to imagine them in a house where they meaning nothing.

The worse case I’ve seen, my Father in law, hoarded. Every space in his garage was full of DIY stuff, screws bits of wood. It took a big truck to clear it on his death. The worse items, in his loft, were his mother’s nightwear and bedding. That freaked me out, and is always a humorous ( not really) memory that keeps myself and husband on our toes. Regards clearing out.

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5dEdited

I have several good friends who are physically disabled (not MS) who struggle with clutter and tend to accumulate things due to their physical abilities to organise, tidy and clean on a regular basis, it easily becomes overwhelming or impossible. They have space issues due to the physical nature of the house and whether it has storage and if that storage can be reached and how to navigate the house. As well as underlying money worries (not wanting to waste things, saving for later). It's tough to deal with these physical and economic issues - more abled people would apply labour, money, or both to resolve.

I have a 12 year old hoarder, who has been like this since birth and is ADD/ASD, i hate the DSM description of things especially neurodiversity. He is incredibly kind and sentimental, feels responsible for discarded things, easily builds emotional attachment to inanimate things, hates waste on principal and feels comforted caring for things (simply applying how he would like everyone to take care of the world) - connecting with objects much like many artists and makers have throughout human history, i see it very much as part of human creative impulse - but clearly also extremely hard for him to manage and it's something that creates a lot of work for him every day.

I know that HD can also manifest after loss and trauma.

With this in mind, i wonder how many MSers are simply neurodiverse, like the general population - we seem to have neglected to understand how much diversity there actually is in the world of brains!

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4dEdited

The bit about the hoard becoming a hazard seems relevant. A health problem

Not too sure about the rest.

This feels timely for me. I hoarded stuff for 2 reasons below.

I have MS and maybe a bit of other things too.

1. Financial drivers

Wonder if folk who haven’t experienced actual food and financial poverty appreciate mindsets of people experiencing periods of lack of money to buy the most basic thing, food.

To borrow, beg and half starve.

It changed the way I viewed objects and food, I cannot emphasise enough how it changed the value, importance and gratitude fora stable food supply to this day.

After poverty I hoarded food, not having enough food to eat for any length of time will do that.

I also hoarded things to trade in hard times, it helped pay the rent in hard times.

I also hoarded spare to repair things.

So could be a bit more nuanced than all hoarding is a health problem.

It can be due to financial circumstance along with experience.

This hoarding meets some of the criteria, however I respectfully disagree for reason above.

Not unaware this meets the criteria of a hoarder!

2. emotional attachment, acquisitive tendencies, clutter and collectors,

Lots of reasons for keeping lots of stuff, and displaying it in sometimes disorganised ways. The taxonomies and categorisations of obects, the need to impose hierachy and order on things are relatively recent customs. Are they not OCD mental health problems.

Is clutter really HD hoarding if its not hazardous, solely because it 'disorganized'?

Food for thought. we all have possessions to a greater or lesser extent.

There's literature about identity and possessions in consumer society.

The blurring of existence and identity with belongings. I am because I own.

Objects as physical reminders of where we've been and who with and the anthropomorphism of objects, the symbolism of objects.

More food for thought. Across the world as people get older clutter intensifies.

Lets take Japanese homes and spaces, the clutter, collections, objects with emotional attachments, and just plain excessive object and tool hoards are proudly out there, often beautifully out there, consciously out there. Minimal space to move in and through. These spaces both public and private often resemble the picture in the article. It’s viewed as healthy and normal its a joy to behold. So maybe its a way of seeing or perceiving?

So stuff of clutter and collections, may have meaning, practical use and aesthetic value all at once. Marie Kondo's a product of her time and culture, not all clutter is a mental health problem. or a problem. Porvided its not a trip hazard and we can find stuff.

Nature does clutter 'quite' well, the field of wild flowers, the deciduous forests, cells under a microscope. The essay linked has a few points.

https://aeon.co/essays/the-life-changing-magic-of-japanese-clutter

Is it more about consumerism, relative affluence and its associated detritus, rather than mental disorder? After all if our American friends did not have such big houses, and lived the UK’s square footage their possessions would be so crammed maybe they’d be be HD candidates? Just as our japanese friend have smaller spaces sometimes, noting the average city abode in Tokyo is bigger and cheaper than those in London UK.

3. seems to be HD as defined, most seem to be older people, the majority male, relatively affluent by global standards, normally completely resistant to change.

Hoard seems to be packaging, wrappers and container from food along with possessions accumulated then perhaps crammed in to smaller homes as they downsize?

Could be loss of executive function.

ADHD is a clutter driver for sure from my friends experiences. And my own, not sure that's entirely MS.

For a subset of older people buying objects and just keeping them often unopened, seems to be normal, compulsive buying disorder, some OCD and affluence, sadly seen it more than once in late stages of ctitical illnesses, it makes people happy.

It's hard to resist the attention merchants and the sellers as a self aware, cognisant, well adjusted 40 year old, let alone for a house bound 60 year old with MS.

The criteria in this DSM 5 for mental disorders in addiction from the USA is new.

Many appear subjective. For instance the first criteria. ' regardless of their actual value.' what does that mean, is it ill defined because it's subjective?

'actual value' to whom?

The market, the individual, another?

Monetary value, aesthetic value , its not clear enough.

All 'value' is always subjective so I get the gist of it but perhaps the language could be better chosen.

Interesting to explore this, it's been good food for thought.

Not sure it's entirely clear this is MS specific like so many cognitive conditions. There seems to be multiple overlaps. As well as individual considerations.

The health risks of trip, falls seem very real, so maybe there's an awareness aspect as well as actual support to declutter and address the causes. That would mean restoring carers as people who do more than wipe the patient down and help put clothes on. In the past the iterations of carers helped older people with exactly these things, tidying up, throwing away, cajoling and comforting peope to help themselves. I know I went out with my mum as she did it during the day as a child. And went to the old peoples home where she worked at during the night. Even the people in the home would get a lot of stuff brought to them. It might mean some kind of nurse or helper visits for those without carers?

It's a real mixed bag! Guess we ned to figure out if it's a problem worth solving. And if so how.

Could be an aging effect mixed up with executive dysfunction, OCD, ADHD, caused by MS or not, as well as consumerism, affluence and more..

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