I want to apologise to all my patients and all the music therapists out there for ignoring you. I will now add music and music therapy to my holistic approach to managing multiple sclerosis.
I enjoyed reading your message about the importance of music in our lives.
I was diagnosed with MS in 2003.
I have been playing the classical guitar since I was 13 and I’m now 73. I’ve attended classes with others for many years and always had great happiness from doing that. At the moment I’ve not been able to go out to attend classes, but I have a tutor who comes to my flat to give me lessons. Sometimes a friend, who was in my class, comes over to play duets with me. It’s a stimulating and invigorating thing to do.
It keeps the fingers and brain active and the spirit uplifted.
I am most grateful for the music 🎶.
Thank you for sharing your thoughts about the value of music.
You have inspired me to return to my piano which I often look at and think I should play more often. As a child I wanted to be a jazz pianist, but I am blessed with small hands so gave up on the idea, but maybe it would strengthen my weakening and numbing hands. Still love jazz, blues, soul, so am envious of your trip, so maybe I'll do something similar for my 60th in a few years time. I am in a Soul Choir, which can be hugely uplifting and brilliant for fatigue. This a community choir so anyone can join. And can I add dancing to your recommendations? It's amazing how when I'm feeling weak and wobbly the sound of some James Brown can get me dancing for hours sometimes!
TLDR; my dominant hand can play piano but not write legibly since a paralysing relapse
I’ve been a professional singer for 20+ years, and I self-accompany on the piano. When I had complete hemiparalysis of my right side from the collarbone area downward in 2018 I thought I’d be very lucky to ever sing again (my vocal apparatus wasn’t affected but my breathing mechanism was noticeably weakened) however not only did my voice recover just fine (the greatest relief I’ve ever felt) my right hand eventually regained enough function to play at a level suitable for performance.
I’m glad you raised this topic though because I’ve had a nagging question I wished I had the opportunity to ask you.
My hand is about 90% recovered when I am playing piano or even drawing or painting (completely amateur hobbies I enjoy) but doing other tasks like handwriting (I used to be adept at lettering) or even typing is very difficult. Typing is painful and my once beautiful writing is now a scrawl that brings me shame that I dread. It impacts me practically as well as emotionally, as I cannot even write my name or note down a telephone number legibly.
Why?? Clearly my hand functions, as I can play well enough to earn money & create music I am satisfied by (I’m very self-critical so would not be playing in public if it was awful) so why can’t I write legibly? ✍️
I’m wondering if it could the pathway that communicates language through the movements of my hand that is causing the issue? It feels ludicrous to me that a hand can play piano but not print my name. Do you have any insights or strategies I could try to overcome this? It’s very distressing to me.
I basically rely on my phone now for everything I need to note down, as typing on a laptop is quite immediately painful and handwriting is not only agony but almost useless. Yet I can use the hand for creative tasks (haven’t figured out a way to convince it that writing is also an art form!)
Any insight or advice on how I can integrate my musical capabilities into improvement in other task realms would be amazing.
Apologies for the essay - since I’ve been ill I also tend to overexplain, I don’t mean to but can’t figure out being succinct. Thank you for any ideas.
You are highlighting the complexities of the brain and that their are parallel pathways that use the same end-organ in your case the hand. The creative/art pathway works, but not the language/writing pathway. I sounds as if you need a full occupational/hand therapy assessment and a programme of activities to improve hand function. Hand function rehabilitation is a complex sub-speciality and you would need to see an expert. Sorry, but there are no simple answers.
Thank you so much for your kind and considerate reply. I have an OT that I can speak to, as physio hasn’t been able to address this issue. I appreciate the advice.
A brilliant post, thank you. Reading comments and reply’s are also very helpful. I’m interested in your comment here about hand function. When I saw my Neuro I mentioned and asked if the numb feeling in my palms, the muscle under the thumb, was related to my long standinding Raynauds. He examined my hands and said I had muscle atrophy and mentioned Carpel Tunnel, he commented it’s normally in chubby wrists, mine are tiny. He referred me for some electrical tests ! The thing is my hands been weak a long time and I assumed it was MS. I’ve raised the issue several times as my fingers claw in a weak way. In the past I’ve been told we don’t have hand physios and only been offered a poor resting splint.
As a board-certified music therapist with multiple sclerosis, i loved this shout out! i consider myself fortunate that my job benefits my own neurological functioning as well as that of my clients and patients, and while I don't often work with people with MS i work with a lot of other neurological conditions, and the impact music therapy has is powerful, indeed. Thank you, Professor G!
Hi Catherine. My father had Alzheimer’s and dementia. As he slowly lost all the parts of himself, including knowing me, I could always communicate in a sing song voice. So I would visit when they had a musician in the nursing home and we would sing a long. Then he would look at me like he knew me. When he wouldn’t co operate with being dressed if the radio went on he would immediately switch mood. The last years were truly cruel, however I have videos of him singing with me, it helps replace hard, sad memories with happy ones. So the power of music goes beyond the grave in a way. Keep singing.
My condolences for your loss, Helen- I'm so glad you have those wonderful musical memories with your father! A lot of my caseload is hospice and dementia care and I see little miracles every day ❤️
Thank you Catherine. A few years have passed now. He died of Covid in the end during the lockdown. It’s only recently I’ve been able to watch him sing and I’ll smile. I’m so glad I took those videos. I did watch them when we couldn’t visit him due to lockdown rules. The power of music and technology. 🎶😍
Towards the beginning of MS in my 30’s (back in the 90’s), I was still single. I had had a severe relapse and was still shaking/tremors, affecting hands, head and neck. I was using a cane too (odd for my age). I had already been booted out at work for some BS (in which I would prevail legally). But I was single, unemployed and with MS. What should I do?
Karaoke! I had to be confident in front of groups and speaking with people as part of my career (which I started to do on my own). So I met a lot of people and made friends. I had to prepare what I would sing, involving taping myself and practicing singing in key. Then I would audio and video tape myself when I “performed” in order to review. All very therapeutic.
Was never really afraid in front of a group, but this got me over the final hurdle. And because I discovered alcohol helped with the shaking, doctor prescribed clonazepam (everything else had failed), and bingo! Fixed! The symptoms eventually faded on their own and I had a way to meet women! And while I was not trying to impress, some people found out about the MS and were quite surprised. You could have MS and fun at the same time. Who knew?
There is a chap called Phil See - an MS patient - who runs a music therapy group in Seattle. I interviewed him a while ago about music, neuroplasticity, its benefit on the brain etc. . https://youtu.be/JvWzIagDBYE
Happy birthday! You do so much for us so it's nice to hear you had such a great and meaningful family holiday.
I like some jazz but much of it is too chaotic for my brain, I prefer predictable and steady rythyms. I don't know what that says about me, a musician friend explained but I forget what he said.
It was the Easter holiday so I guessed you might be away doing something nice. As a paid subscriber I have no issues with that, happy to wait.
I am an Art Psychotherapist working in an Arts Therapies Team with Music and Dramatherapists across North and Mid West Essex. I am glad you have brought the benefits of the Arts Therapies to attention and the lack of them in NHS services. I work with adults with learning disabilities who need support with their mental health and believe all these types of therapies could work alongside DMTs for PwMS.
What a terrific vacation! As especially a blues and jazz aficionado, this trip is amazing. I recall having to bolt from Preservation Hall in NOLA many years ago from claustrophobia!! (SRO and all I saw were belt buckles and backs!) So I sat right outside on a bench to enjoy this duo, which I did see before escaping. I swear, this hundred year old woman played the piano with one finger and could sing blues like nobody’s business with one guy on bass. I listen to such varied music, I am probably a bain to algorithms. My listening is limited to about an hour, however, due to distortion from L deafness, but Bluetooth is a miracle! It is very true that music affects the brain (and body, and… soul??) in an indescribable way. It lifts the mood as nothing else and no drug can. There are times when I blast it to energize, and there is time for quiet music especially when I can’t sleep. It really is therapeutic, and makes me feel alive. Call me Jagger - but I can’t listen to music without wanting to move, I don’t care if it’s just my toe! So for pw/MS, that’s a very good thing, indeed. Welcome home! And helloo everyone!
I play Steel pan and it had allowed me to keep my love of Carnival (St Vincent to the world 🇻🇨💙💛💚) even though being wonky limits my full participation.
Playing a musical instrument in a group especially steel pan is a joyful experience. Or singing in a soul or gospel choir. It's good for your whole being
Im super struggling with learning the guitar - since my fine finger motor skills could be better!
just to mention that the Ottomans were using music therapy way back -eg there's a gorgeous hospital built 1484-8 intended for music making (its in the far west of what is now turkey)
I'd never thought of music therapy. But I guess I'm kind of doing it in a way.
I'm really good at going to pilates classes when I have time but rubbish at making myself do physio stuff at home. I've recently started doing the exercises with music and it makes it so much easier to get through.
I've also started doing 5 min dance sessions music hanging on a rail. My EDDS is 6.5 so I can't do any steps but I can do hip, rib and shoulder isolations. Not only is about the only way I can raise my heart rate, I can really feel my core muscles activating, Especially when I so short burst without holding onto the rail. There's no way I would do this if I wasn't playing uplifting music with a strong beat.
Thanks for this! I’m a 65 year old PwMS, with significant right sided weakness. I used to be adept at classical guitar, so that’s out now. My singing is mostly unaffected. But my new joy is volunteering as a classical music host for the local community public radio station. It took a while to work out adaptations that worked for me - putting headphones on and off with one hand while operating 5CD players and a fader board proved tricky! - but now all is good and I’m having a ball. I was worried about fatigue- I do two naps a day - but the 9-12 morning slot suits me well. I’m getting weary by the end, but I script myself so I have backup on a bad day..
This is super interesting. I am not showing _much_ in the way of motor issues, but there's a definite loss of dexterity in my right hand that's visible in assessments (but not normally). I've been trying to think of ways to work on that, and music seems like a good one! I played instruments as a kid but not as an adult.
Email response:
I enjoyed reading your message about the importance of music in our lives.
I was diagnosed with MS in 2003.
I have been playing the classical guitar since I was 13 and I’m now 73. I’ve attended classes with others for many years and always had great happiness from doing that. At the moment I’ve not been able to go out to attend classes, but I have a tutor who comes to my flat to give me lessons. Sometimes a friend, who was in my class, comes over to play duets with me. It’s a stimulating and invigorating thing to do.
It keeps the fingers and brain active and the spirit uplifted.
I am most grateful for the music 🎶.
Thank you for sharing your thoughts about the value of music.
You have inspired me to return to my piano which I often look at and think I should play more often. As a child I wanted to be a jazz pianist, but I am blessed with small hands so gave up on the idea, but maybe it would strengthen my weakening and numbing hands. Still love jazz, blues, soul, so am envious of your trip, so maybe I'll do something similar for my 60th in a few years time. I am in a Soul Choir, which can be hugely uplifting and brilliant for fatigue. This a community choir so anyone can join. And can I add dancing to your recommendations? It's amazing how when I'm feeling weak and wobbly the sound of some James Brown can get me dancing for hours sometimes!
TLDR; my dominant hand can play piano but not write legibly since a paralysing relapse
I’ve been a professional singer for 20+ years, and I self-accompany on the piano. When I had complete hemiparalysis of my right side from the collarbone area downward in 2018 I thought I’d be very lucky to ever sing again (my vocal apparatus wasn’t affected but my breathing mechanism was noticeably weakened) however not only did my voice recover just fine (the greatest relief I’ve ever felt) my right hand eventually regained enough function to play at a level suitable for performance.
I’m glad you raised this topic though because I’ve had a nagging question I wished I had the opportunity to ask you.
My hand is about 90% recovered when I am playing piano or even drawing or painting (completely amateur hobbies I enjoy) but doing other tasks like handwriting (I used to be adept at lettering) or even typing is very difficult. Typing is painful and my once beautiful writing is now a scrawl that brings me shame that I dread. It impacts me practically as well as emotionally, as I cannot even write my name or note down a telephone number legibly.
Why?? Clearly my hand functions, as I can play well enough to earn money & create music I am satisfied by (I’m very self-critical so would not be playing in public if it was awful) so why can’t I write legibly? ✍️
I’m wondering if it could the pathway that communicates language through the movements of my hand that is causing the issue? It feels ludicrous to me that a hand can play piano but not print my name. Do you have any insights or strategies I could try to overcome this? It’s very distressing to me.
I basically rely on my phone now for everything I need to note down, as typing on a laptop is quite immediately painful and handwriting is not only agony but almost useless. Yet I can use the hand for creative tasks (haven’t figured out a way to convince it that writing is also an art form!)
Any insight or advice on how I can integrate my musical capabilities into improvement in other task realms would be amazing.
Apologies for the essay - since I’ve been ill I also tend to overexplain, I don’t mean to but can’t figure out being succinct. Thank you for any ideas.
You are highlighting the complexities of the brain and that their are parallel pathways that use the same end-organ in your case the hand. The creative/art pathway works, but not the language/writing pathway. I sounds as if you need a full occupational/hand therapy assessment and a programme of activities to improve hand function. Hand function rehabilitation is a complex sub-speciality and you would need to see an expert. Sorry, but there are no simple answers.
Thank you so much for your kind and considerate reply. I have an OT that I can speak to, as physio hasn’t been able to address this issue. I appreciate the advice.
A brilliant post, thank you. Reading comments and reply’s are also very helpful. I’m interested in your comment here about hand function. When I saw my Neuro I mentioned and asked if the numb feeling in my palms, the muscle under the thumb, was related to my long standinding Raynauds. He examined my hands and said I had muscle atrophy and mentioned Carpel Tunnel, he commented it’s normally in chubby wrists, mine are tiny. He referred me for some electrical tests ! The thing is my hands been weak a long time and I assumed it was MS. I’ve raised the issue several times as my fingers claw in a weak way. In the past I’ve been told we don’t have hand physios and only been offered a poor resting splint.
As a board-certified music therapist with multiple sclerosis, i loved this shout out! i consider myself fortunate that my job benefits my own neurological functioning as well as that of my clients and patients, and while I don't often work with people with MS i work with a lot of other neurological conditions, and the impact music therapy has is powerful, indeed. Thank you, Professor G!
Hi Catherine. My father had Alzheimer’s and dementia. As he slowly lost all the parts of himself, including knowing me, I could always communicate in a sing song voice. So I would visit when they had a musician in the nursing home and we would sing a long. Then he would look at me like he knew me. When he wouldn’t co operate with being dressed if the radio went on he would immediately switch mood. The last years were truly cruel, however I have videos of him singing with me, it helps replace hard, sad memories with happy ones. So the power of music goes beyond the grave in a way. Keep singing.
My condolences for your loss, Helen- I'm so glad you have those wonderful musical memories with your father! A lot of my caseload is hospice and dementia care and I see little miracles every day ❤️
Thank you Catherine. A few years have passed now. He died of Covid in the end during the lockdown. It’s only recently I’ve been able to watch him sing and I’ll smile. I’m so glad I took those videos. I did watch them when we couldn’t visit him due to lockdown rules. The power of music and technology. 🎶😍
Karaoke Therapy!
Towards the beginning of MS in my 30’s (back in the 90’s), I was still single. I had had a severe relapse and was still shaking/tremors, affecting hands, head and neck. I was using a cane too (odd for my age). I had already been booted out at work for some BS (in which I would prevail legally). But I was single, unemployed and with MS. What should I do?
Karaoke! I had to be confident in front of groups and speaking with people as part of my career (which I started to do on my own). So I met a lot of people and made friends. I had to prepare what I would sing, involving taping myself and practicing singing in key. Then I would audio and video tape myself when I “performed” in order to review. All very therapeutic.
Was never really afraid in front of a group, but this got me over the final hurdle. And because I discovered alcohol helped with the shaking, doctor prescribed clonazepam (everything else had failed), and bingo! Fixed! The symptoms eventually faded on their own and I had a way to meet women! And while I was not trying to impress, some people found out about the MS and were quite surprised. You could have MS and fun at the same time. Who knew?
(Beatles Fav., other classic rock)
There is a chap called Phil See - an MS patient - who runs a music therapy group in Seattle. I interviewed him a while ago about music, neuroplasticity, its benefit on the brain etc. . https://youtu.be/JvWzIagDBYE
Happy birthday! You do so much for us so it's nice to hear you had such a great and meaningful family holiday.
I like some jazz but much of it is too chaotic for my brain, I prefer predictable and steady rythyms. I don't know what that says about me, a musician friend explained but I forget what he said.
It was the Easter holiday so I guessed you might be away doing something nice. As a paid subscriber I have no issues with that, happy to wait.
‘Without music, life would be a mistake.’
Friedrich Nietzsche
19th Century German Philosopher
How true
Hi Prof G
I am an Art Psychotherapist working in an Arts Therapies Team with Music and Dramatherapists across North and Mid West Essex. I am glad you have brought the benefits of the Arts Therapies to attention and the lack of them in NHS services. I work with adults with learning disabilities who need support with their mental health and believe all these types of therapies could work alongside DMTs for PwMS.
Best wishes
Fatma
I hope you enjoyed your 60th birthday!
Very much so and has given me something else to look forward to.
What a terrific vacation! As especially a blues and jazz aficionado, this trip is amazing. I recall having to bolt from Preservation Hall in NOLA many years ago from claustrophobia!! (SRO and all I saw were belt buckles and backs!) So I sat right outside on a bench to enjoy this duo, which I did see before escaping. I swear, this hundred year old woman played the piano with one finger and could sing blues like nobody’s business with one guy on bass. I listen to such varied music, I am probably a bain to algorithms. My listening is limited to about an hour, however, due to distortion from L deafness, but Bluetooth is a miracle! It is very true that music affects the brain (and body, and… soul??) in an indescribable way. It lifts the mood as nothing else and no drug can. There are times when I blast it to energize, and there is time for quiet music especially when I can’t sleep. It really is therapeutic, and makes me feel alive. Call me Jagger - but I can’t listen to music without wanting to move, I don’t care if it’s just my toe! So for pw/MS, that’s a very good thing, indeed. Welcome home! And helloo everyone!
Yes yes yes!! Second that emotion. Music is life.
I play Steel pan and it had allowed me to keep my love of Carnival (St Vincent to the world 🇻🇨💙💛💚) even though being wonky limits my full participation.
Playing a musical instrument in a group especially steel pan is a joyful experience. Or singing in a soul or gospel choir. It's good for your whole being
Im super struggling with learning the guitar - since my fine finger motor skills could be better!
just to mention that the Ottomans were using music therapy way back -eg there's a gorgeous hospital built 1484-8 intended for music making (its in the far west of what is now turkey)
image: https://www.margiotel.com/en/yerler/sultan-ii-beyazid-khan-complex/
this was while those we might call psychiatric patients were being (mis)treated very differently in the west
https://www.trtworld.com/perspectives/how-an-ottoman-era-sufi-music-therapy-can-help-in-treating-the-sick-12761923
Hi Caroline, great links! Thank you!
Thanks for this history lessons all very interesting and clearly something Western medicine has taken a long time to learn and still needs to learn.
Glad to hear to hear you had such a good time.
I'd never thought of music therapy. But I guess I'm kind of doing it in a way.
I'm really good at going to pilates classes when I have time but rubbish at making myself do physio stuff at home. I've recently started doing the exercises with music and it makes it so much easier to get through.
I've also started doing 5 min dance sessions music hanging on a rail. My EDDS is 6.5 so I can't do any steps but I can do hip, rib and shoulder isolations. Not only is about the only way I can raise my heart rate, I can really feel my core muscles activating, Especially when I so short burst without holding onto the rail. There's no way I would do this if I wasn't playing uplifting music with a strong beat.
Happy Birthday! Thank you for sharing your new experience and relating it in a joyful way to help PwMS.
Thanks for this! I’m a 65 year old PwMS, with significant right sided weakness. I used to be adept at classical guitar, so that’s out now. My singing is mostly unaffected. But my new joy is volunteering as a classical music host for the local community public radio station. It took a while to work out adaptations that worked for me - putting headphones on and off with one hand while operating 5CD players and a fader board proved tricky! - but now all is good and I’m having a ball. I was worried about fatigue- I do two naps a day - but the 9-12 morning slot suits me well. I’m getting weary by the end, but I script myself so I have backup on a bad day..
This is super interesting. I am not showing _much_ in the way of motor issues, but there's a definite loss of dexterity in my right hand that's visible in assessments (but not normally). I've been trying to think of ways to work on that, and music seems like a good one! I played instruments as a kid but not as an adult.