If you have a diagnosis for more than one health condition/disability/learning disabilities.. How do they interact and how do you manage?

In the end I'm just me. But I have what seems a long list of issues and I keep wondering which bits are for what diagnosis and how to deal with them. Or do I just  accept everything as a whole.. If you have multiple health issues or multiple diversity how do you manage? 

  • I think I spent such a lot of time researching to get to where I am now that I haven't consolidated that since. So I need to start reading again and maybe it will fit together more plus I might remember it better. I do identify with the podcasts I listen to but that's not the same thing. I have always had trouble with both fine and gross motor skills ( even worse if it requires balance as well). I'm heavy with a pencil, can't keep within a line when colouring in but can knit and crochet as long as it's not too fine. I like sewing too I think it varies with needle skills. Can't manage any bouncing wheel or ball skills and knife skills not good and family don't let me near any dangerous tools! I like the landscape and windows analogy. Yep people find it funny or annoying that I can't do things too plus being slower than them in most activities and not quick enough to follow instructions . I tried line dancing and aerobics both were a disaster. I like dancing too or I did haven't danced for years. But if it's a ceilidh or something ..watch your toes steel cap boots and bumping into people.. does spoil the fun. And dcd is adhd of motor part .. what a way to put it.. does seem very much like that. Fascinated that the Ritalin helps would never have thought of that and again wouldn't have linked dcd with cp but yes even my tremors fit with that..

    As for spatial awareness I can bump into people in wide spaces, have absolutely no sense of direction, need lots of room on a footpath.. Bodies brains hormones .. how clever but how complicated they are. Have you come across Christopher Germer and Zabat Zin? Yes I do think depression( as is the cfs/fibro) is very much part of the equation and a result of all the effort needed. But I don't get on with anti depressants so just learned to live with it. I am finding everyone's strategies and tips very interesting, almost need to log them somewhere to refer back to easily. Yes a good psychiatrist psychologist and coach! I'm tired today too so just replying to you and Spotty today. Hope work was ok but you'll be asleep now that's another spatial awareness thing I can't do put myself in the shoes of another time zone… ar well.

  • The thing with ritalin is they start you on low doses of short acting and work up as tolerated. SD20s first fortnight on meds was challenging because they suited her but she had to dose every 3-4 hours. She is just like her Dad and uses just over half her dose as controlled release (long acting) with two short acting tablets for key times of day

    Our big finding recently is if she has a racing brain affecting sleep a 5mg dose gets her to sleep.

    Meds are always a gamble, adverse reactions are more common in ND patients, but if you get something you can tolerate and benefits you, it's great. I have some odd side effects with my antidepressant but I can't do without so I'm prepared to put up with this as a 'least bad' option. 

    I think my GP would off-licence ritalin if he could for me, but it's not how this med is issued in NZ. If I win the lottery I will find a private psychiatrist!

  • Bless you. It's bedtime so will read again tomorrow. I found what you have told me very informative and a lot to think about. I haven't had any meds for my ADHD as bit scared of them especially as I have trouble with most meds anyway and I wonder if it would work as it should due to the asd. Never thought of meds for my motor skills but they do for ms and Parkinson's. When I was on teacher training there was a fellow student with cp. she managed very well . Yes you have had a heavy duty week. I hope it's not long before you hear about the interview. Will reply again tomorrow. I have been thinking about the inclusive gym but we don't really have one nearby. I kept looking and discovered there was an outdoor green gym ( just a few pieces) in a village about an hour away ( too far) so I contacted the town council to tell them about it and they've already got it in mind. I am very pleased. We are going the other way, nights starting to draw in earlier. But at least the sun was out this afternoon. Have a good day. 

  • My big deficit is proprioceptive. My fine motor skills and coarse motorskills are task specific in their mapping which frustrates me a lot.

    At the same time as I was getting repeatedly failed on my pen test (which we had too pass to move from pencil to pen) I got the best in school award for needle craft and won my first cake decorating competition against adults in a local fair.

    I see ND like a landscape. The diagnostic labels are windows...you don't see the whole view.

    I'm almost past the painful part of my injury but I can still feel it is "not right" a few years back I would have weeks of residual issues with proprioception difficulty with the affected leg. The consequence - tripping over  on minor surface variation. Rowan's videos for body awareness helped me address a fairly flat footed movement in my stride and I now have good foot dorsiflexion, I can feel it and it reduces the tendency to trip. My family have noticed too!

    I'm considering how I can work on improving my left and right identification. I'm pretty sure it in part anxiety driven as I make mistakes when stressed but can catch things like balls on my non-dominant side of the task is spontaneous. Learning to deescalate anxiety using mindfulness seems to be the obvious option...hard work when a chunk of it is socially ascribed - people finding it funny I can't do things.

    I would like to do this because my SO likes to dance and I would love to dance with him. If we get into the right space and I stop resisting he says I'm great because I can intuitively follow him, but we haven't cracked the key to the right space spontaneously.

    This is where it gets really odd. I've used ritalin a couple of times and my proprioception issues vanished for the 3 hours a 10 mg dose (which is very low given my total dose for ADHD would be 70-80mg/kg daily) was in my system. I sometimes use the lay description that DCD is the ADHD of the motor area of the brain. I was an oxygen starved delivery, and there was a few months of anxiety I would end up with CP as a result, and that is of course a direct impact on motor areas.

    Although it kind of focuses my brain it's not as acute as the effect for the ADHDers. Unfortunately I've not found a psychiatrist ready to use an off licence script as a trial for me to evaluate the impact of a 3 month course... because I know I can learn new motor skills...and if the Ritalin let me do so with less interference it would be great.

    Last bit of wisdom/experience before my bus gets to work. I  suspect my depression is in part rooted in how much mental effort managing my unruly sensory system takes. I tire easily. I'm late to work because I am exhausted today. 4 days of SO in new work, getting back to exercise and juggling the first week back at work alongside a job interview. Thank goodness it's spring and I'm getting both warmth and bright daylight at the ends of the day! That helps.

  • Quirkyfriend I am uncertain about the overlaps. We both have dcd and I have adhd and am autistic and you have ADHD and autism in your family. Plus I know some people with dyslexia also have overlap too. The business of coordination, balance and spatial awareness.. do you notice distinct differences between you or is it similar or is it yet again down to the individual? Mines much worse when I'm tired. And are the overlapping bits really all part of one thing?  Today has been quite yukky I could use some of your wisdom. 

  • Thanks Quirkyfriend Iwill have a look. I spent some time looking at the aero Pilates and can see why Spotty Tortoise bought one. There are others too which are more off the floor. I have found a place about 12 miles away that does reformer Pilates but for a regular commitment that's too far. I have enjoyed Leslie Sansome Walk at home on YouTube. She takes you through at the level of your choice 1-5 miles and changes the steps to incorporate different muscle groups and she makes it fun.  Even though I have a reminder to do it I forget or get sidetracked or need the energy for something else ( how I need to use my spoons that day). Glad you have found a gym where you feel safe and have supportive staff.. that makes a big difference. 

  • Hi Misfit61 and ,

    About 2 years ago I discovered a gym that has a strong rehabilitation and inclusion emphasis. The person who started it has some YouTube clips for what he calls Body Awareness. Search on YouTube: Rowan Ellis Body Synergy Gym. There are 6 rep and 12 rep. Start with the 6, it looks easy but you will find it makes you sweat. They are about building core strength.

    Technique is important, so do listen carefully and use a mirror to check your form. If you are under the care of an OT or physio, show them and feel free to share the clips.

    I did these for 3  months with static bike (he even has advice on posture on a bike), now I do weights. The staff constantly check technique.

    It's not fun but it's great for well-being

  • Thanks Spotty for all the excellent information and taking the time to tell me. Not at all rambling but useful. ou've got it just right too on all points. Practicality, price and motivation wise but will have a look to follow up what you've said. This conversation has reminded me of the Benefits of a strong core and flexibility as my body becomes less mobile and still painful. Thank you

  • Glad your kindling production went without incident.  I had to do a bit of research on the Pilates as I've had my machine for a long time.  Joseph Pilates originally invented what is truly called the Reformer as a rehabilitation apparatus and it can all get very complicated.  I came accross what was being sold as the Pilates Performer on QVC years ago (don't ask what I was doing watching shopping channels back then, who knows) there was a lot of demonstrating and I was intrigued.

    There is still some of it on the QVC website but it's now called Aero Pilates and there is a website aeropilates.co.uk which is worth looking at for all the videos, you will get the idea.  A proper Reformer is £1500 upwards and they are huge beautiful wooden things, the Aero one's are more like £4-600 but the point is they are all over ebay and the second hand market for much less.

    This is probably because they do take up a bit of room, which you may have a problem with as your house is obviously as cluttered as mine!  They are described as portable but in reality they are not super light to fold up and down, so the whole point of it being such an easy and effective form of excersise only really applies if you can leave it out somewhere, from memory you need about 7ft by your arm span.

    I hope this isn't sounding too negative but I don't want to get you excited about something that may be completely impractical.  These cheap ones are only just off the floor but you can get a stand to raise them and most of the beginner exersises that I remember doing were lying down or sitting up.

    I know this is a ramble but my point is that I struggle to motivate myself and dislike classes and the gym but when this thing was out and accessable I used it, loved using it and it was surprisingly effective with just a 20 min session of basic moves. I know it's not aerobic but I feel like flexiblility and strength are really valuable especially as we get older, it is supposed to help with pain and got rid of my stiff neck.

    It's worth googling Pilates Reformer and the Aero Pilates site just for the videos.  Now shut up Spotty!

  • Thanks.. safely in and done Slight smile

  • Another interesting post .. Yes I think you might find looking into dcd helpful. There is a book by Mary Colley which is very helpful as is the dyspraxia foundation.. It is surprising what symptoms the condition covers.. and yes I am still more than unsafe wobbling on a bicycle but looking into a recumbent tricycle. I have done Pilates in the past which I really enjoyed but I found getting up and down from the floor and kneeling difficult and too embarrassed to continue the instructors alternatives whilst everyone else doing the same thing. Would you tell me more about the Pilates table and how you use it? There are remedial classes if I drive to the local city but expensive. I am not very motivated to exercise by myself but can't stand the noise and claustrophobia of the local sports centre. I do get out for walks a bit though. 

  • Hello quirkyfriend  at home so can reply at last! I found your post a very interesting way of putting things. 

    I hadn't thought of it that way round. But of course when we are in pain we do become tired more easily and our muscles feel more sore less controlled and I suppose that does take up room. 

    When Im really tired my dcd is worse too. I drop, break, loose things more frequently, have no volume control and my "shouting" is worse , propensity to injure myself etc again I agree so nice to have someone notice adjustments might be needed. My food prep and safety in the kitchen got quite bad .. not quite resolved yet. Yes I sometimes get frustrated and upset when "normal" things are difficult. My family are used to me causing calamity.

    I hadn't associated it at all, but when I got my dcd diagnosis the Dr talked about headaches, posture, shoulder and back pain because she said part of the dcd is lack of muscle control. So I was intrigued by the next post by Spotty Tortoise. The dr said it would help all of the above if I strengthened my muscles especially my core muscles because if I did it would support my spine more and relieve some of the pressure. She recommended the Alexander technique and Pilates ... 

  • I spent a year going to the pain management course through the hospital. It was very good but I was still working at the time and tho I got a lot out of the course and help afterwards ( OT & psych cbt) I couldn't manage to keep up with it at home. Going through the file & info is on my will do when I can list. But I still try to pace myself in a basic way. Thanks Rainboweyes. 

  • I always think that anything that may help is worth a try. If it doesn't work for you, then at least you've given it a go. There are also things called pain clinics, where a team work together (usually occupational therapists, physiotherapists etc) to help you improve your quality of life. Your doctor can refer you one of these, so definitely I'd ask! There are also fibromyalgia support groups out there where you can meet other people with fibro and the group leader can suggest ways to manage symptoms.

    Good luck!

  • I've only been diagnosed with depression, anxiety, and SAD so far, it's been five weeks since my GP agreed to refer me but I haven't heard anything yet Disappointed am starting to wonder if she really did it.  Also wondering about going private, I have some savings, but how do you know if they are aware/sympathetic to adult females with great masking skills, (though possibly not so great lately)?  I honestly don't think I can wait two years in a state of oscillating self doubt and complete certainty on the ASD front.

    Fifteen, twenty years ago I saw a psychologist but that therapy ended up focusing on the fact that I had a brother when I was four who died at ten days old.  It was all about trying to find a reason for my depression, it never felt right and I don't remember being traumatised by it though my parents relationship was dysfunctional (I strongly suspect my Father may be ASD)  and I think my Mother did all her crying just to me and says I just used to give her a hug...

    Later there was CBT and group therapies (horror) but I can now see that they could never really have helped because no one was seeing the real cause of the anxiety.  I tried hard but when they were over I ultimately felt worse because something was still seriously 'not right' but I knew I was no longer depressed, it was something else.  My Mother paid for a consultation with a psychiatrist and the only conclusion was that I was not clinically depressed, the end.  I don't remember the sequence of events but at some point in this everyone around me kept telling me that I was so good at so many things that I should 'just' do x or y.  Somehow I knew this was impossible and at that point I took an overdose. I didn't really want to die but I couldn't bear the thought that life was just going to be this hard and hopeless forever.  So I walked away from the idea of help and hid under my stone at home until now.

    I think we are whole entities and need to treat ourselves as such, maybe focussing on different things at different times as the need arises or we have the capacity.  Apologies if this is a muddled rant.

  • I have dcd too and will answer more fully later.. you will understand when I say I can't multitask because I am chopping up kindling! .. controlled setting in a chair and choppers.. can't cut myself so I'll text later but want to get on before it rains! 

  • That is a very practical reply and can see that you have to do lots of managing life to accommodate what you have.  I don't have anorexia ( compulsive and binge eating instead) but I do have all the other things. However Planning and following through and routines  are a nightmare which fits in with the adhd/post menopause side of things. 

    I might try a fibromyalgia/cfs forum as this has given me confidence to maybe try one... 

  • I know the feeling of being a burden. I rely heavily on my dad and sister so even though I help them too it's not easy. I am very grateful to have my own home and even though I'm lonely at times ( less so since this forum) it is my recharging space. 

  • Hi Quirky, I don't know much about DCD and don't think I have enough brain space to look it up right now, but I'm curious about your 'intention tremor'.  I have said elsewhere that shaking (mainly just my hands) is a current major problem and it is mainly triggered around social/performance anxiety and that makes sense.  There are other instances I've noticed though that are different and your mention of the kitchen has brought it into focus. I work alone in my studio at the end of the garden with no one but the dog watching, so no pressure there and I often am drawing tiny repetitive details, these days when I know these details are coming up I start to shake so that I can't draw them.  Also when I go to prepare food, again alone in the kitchen, I often start shaking to the point where I'm not really safe to be in charge of a sharp knife and cut up an onion.

    Just wondered if you have any thoughts on this, I don't think I have DCD as I've always thought I was quite coordinated but I was slow learning to ride a bike and still don't feel that safe riding one, which has made me wonder.  Maybe it's something I should look into.

    I hope you are taking good care of yourself as you always seem to be very busy taking good care of the people around you and are so full of sense and practical ways forward.  You are always inspiring.  I know you have an exercise routine but when you mentioned your back pain I wondered if you've ever tried a Pilates table thing, I have a cheap one from a shopping channel and when I use it (not doing so at the moment) I know it eases neck pain and makes me feel much better as it's all about helping your body to be balanced with itself.  It' much easier to work with/against the table than just doing Pilates on the floor.  Just a thought. :)