EnableMe online chat transcript: Hand, arm and shoulder

Chris Lassig
Hi everybody, our chat on upper limbs - that's hands, arms and shoulders - is now live.
Joining us online today is occupational therapist, educator and researcher Dr Annie McCluskey, and physiotherapist Tahnee Winks.
As usual, we ask that you mention the name of the person you're replying to when you type, so that we can follow who's talking to whom.
Hi Annie and Tahnee, welcome to the chat.
Annie McCluskey
Good morning all from sunny Sydney
Tahnee
Thank you Chris, and good morning from Brisbane
Colin Cowell
Hi Annie its Colin Co Chair Stroke Foundation Consumer Council and I’m based in sunny Coffs Harbour
Chris Lassig
Welcome Colin!
Chris Lassig
To kick things off, we had a question sent in by email from Suzanne who cannot join us for the chat today. But she has an intentional tremor, and she's wondering how to treat that?
Annie McCluskey
For Suzanne - There are not any specific effective therapies for tremor or ataxia that I know of – generally we use task specific therapy to help practice, over and over again, a skill or movement that the person needs or wants to master (eg cutting food, drinking without spilling). There isn’t any other way to really improve performance except lots and lots of practice and repetitions.
Chris Lassig
Thanks Annie, we'll pass that on to Suzanne
John
For Chris/Suzanne. In regards to an intention tremor. There is some evidence that strength training can reduce the magnitude of the tremor. This hasn't correlated with increased functional performance. However in many cases the tremor doesn't stop them completing a task, rather it just slows them down or annoys them. So reduced magnitude of tremor through strength training may reduce frustration for the person
Desney
Hi Annie, Desney from Sydney
My question is about being propped up on pillows on the bed for most of the day. Shoulders getting increasingly slumped/bent over. Do you know of bed supports that can help? And anything else?
Annie McCluskey
Desney – if you or someone you know is spending many hours in bed, you/they need to find ways to stretch muscles and joints out. Difficult to suggest how they would do that without knowing the person’s abilities. I don’t know of any equipment specifically for that purpose
Tahnee
Thanks for your question Desney. As far as positioning for your shoulder goes, do you have any therapists involved with your care at present, such as an Occupational therapist or Physiotherapist?
Desney
Thanks, Annie. It's me who is on the bed. I have had several strokes and suffer constant severe fatigue which really limits how much exercise/stretching I'm able to do. But I am very determined and disciplined! Tahnee/Annie, would there be physics in the northern Sydney area who might be able to offer help/guidance?
oops – physios
Tahnee - an OT, but she didn't really know of anything
Annie McCluskey
Desney - your question and concern about discomfort from being in bed a lot sounds like you might benefit from massage? Many people can find that relieves muscle pain and discomfort.
Desney
Thanks, Annie. Yes, it does help. But mainly it's the slumping I'm hoping to address. To find bed supports and maybe exercise that will help me straighten up a bit
Tahnee
Desney, possibly considering having a Physiotherapy review or Occupational therapy review at home to discuss your concerns and help to find ways to assist you with your ongoing recovery and positioning is an option. You could potentially aim to set goals that are important to you and a therapist with knowledge in stroke or Neurological Rehabilitation could assist and design exercises that are specific to where you are at the moment.
Desney
Thanks, Tahnee. OT has assessed me at home (via NDIS) and has done all she can. Will try to find a physio who can do the same.
Annie McCluskey
Desney - if you want advice about equipment, and are not currently in contact with an OT, you could phone the Independent Living centre for free advice - they can give you advice about products and options. They are very helpful. Their website also has a lot of product info.
Desney
Thanks, Annie. That’s great idea. Will contact them
Janice
good morning from janice..adelaide
I’m trying to get my shoulder/arm to relax so i can move it ....i think it’s mainly my head... what can i do?
Annie McCluskey
Janice - if you have overactive muscles, or muscles that want to 'help' when you are trying to switch on your wrist or finger muscles, again there is no substitute for specific practice, including mental practice. You might need help from the therapist to target the right muscles, and feedback / coaching to 'switch off' the helping muscles. For example it’s common for shoulder and elbow/wrist flexor muscles to turn on and help whenever a person attempts to reach.
Janice
would i get an occupational therapist thankyou annieMcC.. i think the muscles turn on too well and they cause pain and i can’t turn them off
Colin Cowell
Question for Annie : Since my Stroke 18 Months ago had a lot of back and shoulder pain so i took up swimming 40 lengths a week : was that a good move ?
Annie McCluskey
Colin - yes, exercise and physical activity have so many benefits for your physical health and mental health
MEG1963
I have just got online I misread my email.
I am 8 years post stroke using the saebo flex for going on a year. I had a lot more movement prior to my last round of botox and am feeling depleted. I'm not sure if I should continue the therapy or not. Is this relevant to this chat group?
Judith Nance
Can you direct me to any good quality articles about Saebo splints? I have a client who has purchased one independently and it is difficult to find therapists trained in its use, plus it seems you have to commit to several years of training, all very expensive if paid for privately. I don't want to discredit the splint, not knowing much about it myself, but am worried that a lot of money will be spent without much return. HIs arm is quite contracted and recent botox and splinting have been mainly to help reduce the clawing of the hand for hygiene purposes
Annie McCluskey
Judith Nance - there are a few articles describing outcomes from SaeboFlex splints:
(1) Barry, J. G., Ross, S. A. & Woehrle, J. (2012). Therapy incorporating a dynamic wrist-hand orthosis versus manual assistance in chronic stroke: A pilot study. Journal of Neurologic Physical Therapy, 36, 17–24. https://www.ncbi.nlm.nih.gov/pubmed/22354108
(2) Farrell, J. F., Hoffman, H. B., Snyder, J. L., Giuliani, C. A. & Bohannon, R. W. (2007). Orthotic aided training of the paretic upper limb in chronic stroke: Results of a phase 1 trial. NeuroRehabilitation, 22, 99–103. https://www.ncbi.nlm.nih.gov/pubmed/17656834
(3) Jeon, H., Woo, Y., Yi, C., Kwon, O., Jung, M., Lee, Y. et al. (2012). Effect of intensive training with a spring-assisted hand orthosis on movement smoothness in upper extremity following stroke: A pilot clinical trial. Topics in Stroke Rehabilitation, 19, 320–328. https://www.ncbi.nlm.nih.gov/pubmed/22750961
(4) Lannin NA, Cusick, A, Jills, C, Kinnear, B, Vogel V, Matthews K, Bowring G. (2016). Upper limb motor training using a Saebo™ orthosis is feasible for increasing task-specific practice in hospital after stroke. Australian Occupational Therapy Journal, 63 (6), 364–372. (5) https://www.ncbi.nlm.nih.gov/pubmed/27646624 
Here are two other articles - all of these articles describe how the Saeboflex program has been delivered.
Stuck, R., Marshall, L. & Sivakumar, R. (2012). Saeboflex upper limb training in acute stroke rehabilitation: Feasibility study. International Journal of Stroke, 7, 20–21.
Stuck, R. A., Marshall, L. M. & Sivakumar, R. (2014). Feasibility of SaeboFlex upper-limb training in acute stroke rehabilitation: A clinical case series. Occupational Therapy Internat, 21, 108–114. https://www.ncbi.nlm.nih.gov/pubmed/24760593 
Judith Nance
Thanks for those Saebo articles- I'll definitely chase them up!
Annie McCluskey
JudithNance - if you don't have easy access to an online library/databases, remember that you can always email the authors and ask for a free copy - most authors will email a PDF copy to anyone that asks - you can usually find the email address for the first and other authors on the first or last page of any article - or google for their webpage - most researchers are universities have a webpage. When we publish research that takes 2-5 years to complete, we want as many people as possible to read the research. So please do email authors.
Judith Nance
Thanks AnnieMcC. Good tip!
Tahnee
Great tip, Annie on how to access research/ articles
Rebecca Lachlan
Good morning everyone, my name is Rebecca Lachlan and I recently took part in the podcast on hands, arms and shoulders. I am happy to answer any questions you may have about Rehabilitation
Desney
Hi Rebecca, if you could read through my questions so far, I'd be grateful if you have any insights. Thank you.
Chris Lassig
Welcome Rebecca, glad to have you here! To update everybody, Rebecca is herself a young stroke survivor and member of the Stroke Foundation's Consumer Council, and she shared her experience on our most recent podcast.
Rebecca Lachlan
Hi Desney, It is hard to find good supports to keep you from hunching over.... I do not know of anything that would help with this, I tried really hard to keep my back straight and this will also increase your core strength at the same time your posture making it less frequent when hunching does occur in beds or chairs.
Desney
Thanks, Rebecca. Yes, all that - core strength a big issue too. I'm no longer able to sit up in a chair for more than a few minutes a day. Doing all I can, but it's constant work :)
Tahnee
Desney, sounds like you are really motivated, and that's fantastic.
Desney
Thanks, Tahnee - yes, very motivated, very disciplined :)
Rebecca Lachlan
Hi Desney, It can seem like a never ending battle at times and things aren't happening fast enough, the way I coped with it was to congratulate myself no matter how little the change was, small things can lead into big things and be proud of where you have come from to where you are now
Tahnee
Hi Rebecca, that's really valuable and you have obviously also worked very hard.
Rebecca Lachlan
Thanks Tahnee, my blood clot was in my brain stem which affect everything from the neck down. I knew that only I could really make the changes I was looking for so looked at as my new job - all day everyday for the first 2y 6m then a lot started to happen more naturally. My outlook was I get out what I put in and now I'm pretty close to how I was before the Stroke
Annie McCluskey
Rebecca Lachlan - can I ask how you structured your daily routines to incorporate practice and therapy over such a long period of time?
Rebecca Lachlan
Hi Annie - A lot of hard work and determination on my end - I had days where it got to me doing the same thing over and over again but I never lost sight of my Goals - Walking, Talking, Writing, Working and Dancing. Every time I grew tired of daily activities, I would remind myself of what I wanted to get out of me Recovery and that I was the only one that could ultimately get it done.
Annie McCluskey
Rebecca Lachlan - did you keep video recordings of your recovery?
Tahnee
Hi Rebecca, it is wonderful to hear of your determination and ongoing motivation.
Rebecca Lachlan
Sadly no I didn't, I was more focused on doing it than recording it. Some Doctors and Physiotherapists took some footage to show to other patients though I did not think to ask for a copy.
Tahnee
Rebecca, may I ask, did you have periods of therapy on and off or reviews at different stages along the way to assist with continuing to progress towards your goals?
Rebecca Lachlan
Hi Tahnee, thanks I am proud to think how I started out to where I am now.... I was constantly in one therapy or another but that was my choice as I was really keen to get out of the hospital bed and out of hospital all together lol
Debbie Hatchman
Hi Annie/Tahnee. My sister had a massive stroke in march 2016,which has affected her whole right side including her speech. She has lost all motivation to exercise her right arm and hand with the attitude that it will never work so why bother. She said her arm aches in the cold weather.
Desney
Debbie, I realise this is 'out there' - but I find Reiki/energy healing is the only thing that truly help alleviate that muscle aching; it also help with many other aspects of stroke recovery.
MEG1963
I am 8 years post stroke using the saebo flex for going on a year. I had a lot more movement prior to my last round of botox and am feeling depleted. I'm not sure if I should continue the therapy or not. Is this relevant to this chat group?
Judith Nance
MEG1963 I would be interested in hearing if you think the Saebo was helping before the recent round of Botox,
Annie McCluskey
MEG1963- your experience of losing motor function (movement) in fingers or hand that you had pre-Botulinum Toxin is quite common because the drug can affect unintended muscles. The advantage is that the drug stops overactive muscles contracting for a few weeks/months while your brain learns to switch on other weaker muscles on (e.g. wrist or finger extensors, thumb abductors). So I suggest you take advantage of this 'window' of time and keep practicing
MEG1963
Hi Judith Nance yes it certainly was. I had botox 1 in Aug 2016, due to increased tone. And I was fitted with a second skin glove which gave me support post botox to keep tone at bay.
Then I started the saebo flex regularly with my OT. However we found the glove allowed for no wrist support and so the second round of botox was administered in May of 2017 this has caused my fingers to misbehave and not do what I want although I held a plastic cup in OT without squashing it and released it into the bin.
Judith Nance
MEG1963 sounds like two steps forward one step back. I hope things improve for you.
Rebecca Lachlan
Hi Meg1963 - I am coming up to 10 years next March and understand the struggle when working with Botox. I was lucky and responded well to the injections - I sat with my arm straighten out in an air splint everyday - yes it hurt - one thing I have found only you know how far you can push it and using this each day helped my muscles to stretch out and stay that way most of the time, hope this is helpful :)
Grace
Hi all, I am an OT at Mona Vale Rehab and would like some advice for one of my patients. He has developed good shoulder and elbow extension, has limited finger flexion and no finger, thumb or wrist extension. I have been applying estim to the wrist daily and have attempted gravity elim exercises with no improvement. At times when the patient attempts to extend his fingers, he involuntarily flexes/curls his fingers under? Could this indicate increased tone? And do you have any ideas for therapy? Many thanks!
Annie McCluskey
Grace - estim to the weak finger/wrist extensors sounds like an appropriate evidence-informed intervention – gaining active control of these muscles can take some people months, not days or weeks – you and they might need to persist – while they are an inpatient (or outpatient) your role can be to give feedback and coaching to the person, as many people cannot detect/see when they are using too many other muscles. What you are seeing may not be spasticity but the person switching on ANY muscles they can to try and elicit wrist or finger extension – trying to get their brain to send messages to the right muscles. I would also suggest trying mirror therapy and some mental practice.
Grace
Thanks Annie! Yes I've also been doing mirror therapy and encouraging mental practice. I'm finding mirror therapy difficult because the patient strains so hard to extend his fingers that his arm involuntarily shifts across and moves the mirror box! Does mirror therapy lose effectiveness if I am holding both hands in place to prevent this? I figured if I hold both hands it should be ok?
Annie McCluskey
Grace - ah yes, I know the problem you are describing where the whole box lifts off the table. Even more important for you to be giving clear feedback when that happens. I'd suggest asking the person to make very small movements only to start without their hand and arm lifting off the table. And yes, you don't want to hold their hands down (which hides the compensations). Ask the person to (attempt to) move their L and R finger or thumb once, both together then stop/rest to let muscles relax, then repeat. Single repetitions.
Grace
Thanks Annie, that's what I've been trying but it doesn't seem to be working at this point. May just need more time and practice. Thanks so much for your help!
Annie McCluskey
Grace - yes, persistence and lots of practice are usually needed. Note that in the trials of mirror therapy, the programs were typically for 30 mins x 5 days a week for 4-6 weeks, usually with people in the first 3-6 months post stroke We don't have many studies involving people later post-stroke. I usually suggest people aim to build a 5-10 min block of mirror therapy practice into their UL routine, followed by some mental practice, then maybe some esteem, then some specific practice, then another 5-10 mins mirror therapy and repeat the cycle. A bit like going to the gym and doing circuits.
Desney
Thanks, everyone, for your help and suggestions. Too fatigued now. Will check transcript in case anyone has further suggestions etc.
Bye for now
Chris Lassig
Bye Desney, thanks for joining us.
Annie McCluskey
To everyone - video recordings of your recovery are easy to make/keep and can be great for reminding you what you could/could not do last month or last year. Get your partner or family member or therapist to take videos at regular intervals of your arm, mobility, speech or any activity that you want to improve
Chris Lassig
Hi everybody, just letting you know that we have 10 minutes left in our chat. Get your final questions in - this is a great discussion!
Annie McCluskey
For everyone - has anyone read "Stronger after stroke: Your roadmap to recovery" by Peter G Levine? I recommended it in the podcast (thanks to Joy Hill for recommending it some years ago). There are some neat chapters and sections in the book such as "Say no to plateau", "Recovery Hints and Tricks" "Make home movies" " Spasticity - the beast unmasked" etc
Chris Lassig
Thanks Annie, we have a review of "Stronger after stroke" on EnableMe: https://enableme.org.au/Users/Profile/My-Blogs/View-Blog?blogId=16796ab9-0c1e-420a-b46f-f18354cedf90 
(I'll make that a link in the transcript)
Chris Lassig
OK everybody, that's the end of our chat today. Thank you to everyone for an hour of interesting conversation. Thanks especially to our special guests, Annie McCluskey, Tahnee Winks and Rebecca Schmidt-Lachlan.
If you have any other questions on this or other topics, please call StrokeLine on 1800 787 653.
Tahnee
Thanks everyone for the interesting conversation and all the very best!
Rebecca Lachlan
Thanks for the opportunity to participate Chris, I enjoyed chatting with people to give them ideas and thank you for all the great questions