Rehabilitation and Covid19

Hi Hilary,

Thank you for sharing your thoughts with us in the EnableMe community. You have given me a sense of how the Covid-19 situation has affected you and I believe others in the stroke community too. On StrokeLine, we have certainly heard of delays and difficulties in accessing health care through this period, and I am sorry to hear that this was your experience too. 

As you mentioned, hearing from a health professional that you are making good progress can be really validating and being informed where to make changes in rehabilitation can also help to direct your focus. It can be disheartening being left in limbo to try and figure it out on your own.

What I have found in talking to other stroke survivors is that knowing where to go to get supports is crucial.

Throughout Covid-19, there were many community rehabilitation centres in hospitals that closed down for some periods and perhaps a slight delay to roll out telehealth services, as this was quite new for the majority of the country. However from discussing with health services I found different avenues to explore to continue to get support for stroke survivors.

There are now many community rehabilitation centres up and running, and more telehealth options too if that is a preferred option. I would be more than happy to discuss how to get more support. An occupational therapist for example may be useful for you if you are looking into returning to work. They may also be able to discuss with you about whether you are overdoing things, from a energy conservation or fatigue perspective and you can also discuss your driving.

There is also the chronic conditions care plan which is a Medicare subsidised program that allows for 5 allied health (including Occupational therapy) sessions that you may be eligible for if you need.

With your GP support, you may be able to access community rehabilitation or the chronic conditions care plan.

It is great that you have the invaluable support of your family and friends, and wonderful that you have been able to get back to gardening, walking your dog and driving short distances. Returning to your normal routine is an amazing feat. Keep these achievements in focus, and certainly acknowledge these wins!

Here are a few resources that you may find helpful

EnableMe website on getting good healthcare under the at home section

EnableMe return to work page

Thank you also for being so open and willing to be a support for others. It creates a really lovely environment here in the online stroke community.

Please feel free to call us on StrokeLine for more information on accessing supports on 1800 787 653 (Mon-Fri 9am-5pm AEST)

Warm regards,

Kath (StrokeLine)

Hi Hilary! 

I had two strokes in January of 2020.  I too was discharged into the Covid-19 world.   Incredibly frustrating.  I was fortunate to be able to meet with my rehab team just before the closure period began.

There was a suspicion that it could be a problem so they gave me a 6 week program ahead of time.  Hoping that it would be short lived.  Which obviously it has not been.  
thankfully from their program and with the help of my GP and privately funded rehabilitation appointments I have been able to keep moving forward albeit frustratingly slowly.  

I have numerous physical impairments from my strokes and am also yet to return to work or even many social activities.   It can be so isolating.  

This is where strokeline and these forums can be of such help!  There are also others on Facebook that help us to connect with others that understand.  

I have only just gone 40.  I found it frustrating that Stroke is treated as a old persons problem when that couldn’t be further from the truth!  There are sooo many young people.  Hospital care was very much old people fashioned... particularly in the early days. I wanted my life back!  My partying... stupid 30 something life back!  That was perhaps the hardest part for me.   My only joy came in the physical therapists and the Occupational therapists being 20-30 somethings.  They got me moving! 

it can be isolating when others around you... especially family and friends don’t understand.  They can’t possibly unless they have experienced this themselves.  I have lost friends who simply either can’t or won’t take the time to let me go at my own pace.   But are they really friends if so? 🤷‍♀️

so Hilary,  I completely understand your frustrations. Part of it is a little fear of the unknown.... are you doing the right things etc.  

Just listen to your body.  If you are tired.... rest.  Energised... so something you love! Keep on moving your body and follow your doctor’s instructions.

  I am sure with programs opening back up... you will begin rehabilitation programs soon.  

in the meantime,  I am here anytime you need to chat! 

take care of yourself 🌷💕

Hello Hilary,

I had my stroke 7 years ago at the age of 38 and agree with @SOlsen3 that it's very disheartening being a young person in an 'old' person's problem.

I can say though that my rehab continues to this day and I'm still improving. Whilst COVID-19 may delay therapy, it will not stop your improvement as long as you have the will, the energy (that's the BIG one) and the support around you. Unfortunately it is a long road ahead, not just with rehab but the whole stroke journey. 

The great thing is though, is that people here, including the amazing support of Strokeline, understand, empathise and can help support you every step of the way in which you seek support. There are also many support groups on Facebook which can help including when you're feeling down and isolated. We have lots of fun with Genyus with the fabulous Cal Rixon and the zoom Coffee Club catch ups. There are also state based support groups which, when restrictions lift and when you feel the time is right, you can meet others who have survived strokes and come out the other side :-)

All the best!! Saran xo

Hi Hilary  thank you for such a lovely thorough message that you’ve shared for us it has prompted me to put my case forward just so that I can share and hope that you find some encouragement in it . I had my stroke on 1 February 2020And luckily for me my son and daughter-in-law and grandkids we are visiting for lunch and they noticed a droop in my face.  My daughter in law is a nurse and was concerned and said we’re taking to you you to the hospital right now and that’s where my journey began. I was in hospital for six days and I can’t speak more highly of the staff the system and all that they did for me in that time at the Royal Brisbane.  I had every test and examination and consultation seemingly endless  tests that were checking my heart my brain and my health my sleep and almost every waking hour with questions from the lovely staff and nurses until my time of discharge the staff were very thorough and I was placed on the community  based rehabilitation system with a speech therapist and an occupational therapist I was also given a heart monitor which was attached for 30 days and 30 nights truly amazing twice a day I would send the recording of my heart off via a phone hook up line to somewhere I don’t nowhere but it was all recorded  and checked by someone and apparently was all clear anyway my goals were to be able to write again properly as my writing is gone kind of weird and to be able to speak freely as at the time I found words more difficult than usual. I could still speak and I still had clarity but I got stuck on some words from time to time  which was frustrating. My writing also when I saw it it was not my handwriting it was not what I was used to it was kind of weird as well.  I’ve been a widower for just on 3 1/2 years and although I have four sons and four daughters in-laws and 7 1/2 grand kids  I have mostly dealt with my rehabilitation under my own steam with the help of my rehabilitation team of course .  The community based rehabilitation team were thorough kind and reliable we started with face-to-face meetings in my home but once the Covid had taken over we did them with telehealth calls which were just as beneficial. I can highly recommend if you can get  A referral to the community based system there are many benefits to it. Since that time I have returned to my job part time working from home for only 3 half days per week. I find that is enough for me at the moment As I still get quite fatigued. The fatigue is phenomenal it’s something I still find it hard to deal with as I am willing to work more or do more but the fatigue is like walking through thick warm numbing blanket of fog that only sleep can fix.  I also lost my license or was not allowed to drive because of the/but I’m glad I’m gladly back on the road again now with certification from my doctor and and M class license being a medical condition which gets reviewed next year. So all in all it’s been a journey and I hope that you can get Some tangible support.  I can only suggest you talk to your GP who should be able to recommend or arrange further therapy. thank you for your time I’m sorry I raved on so long but I hope you get the help you need kind regards Russ

Hi Hilary  thank you for such a lovely thorough message that you’ve shared for us it has prompted me to put my case forward just so that I can share and hope that you find some encouragement in it . I had my stroke on 1 February 2020And luckily for me my son and daughter-in-law and grandkids we are visiting for lunch and they noticed a droop in my face.  My daughter in law is a nurse and was concerned and said we’re taking to you you to the hospital right now and that’s where my journey began. I was in hospital for six days and I can’t speak more highly of the staff the system and all that they did for me in that time at the Royal Brisbane.  I had every test and examination and consultation seemingly endless  tests that were checking my heart my brain and my health my sleep and almost every waking hour with questions from the lovely staff and nurses until my time of discharge the staff were very thorough and I was placed on the community  based rehabilitation system with a speech therapist and an occupational therapist I was also given a heart monitor which was attached for 30 days and 30 nights truly amazing twice a day I would send the recording of my heart off via a phone hook up line to somewhere I don’t nowhere but it was all recorded  and checked by someone and apparently was all clear anyway my goals were to be able to write again properly as my writing is gone kind of weird and to be able to speak freely as at the time I found words more difficult than usual. I could still speak and I still had clarity but I got stuck on some words from time to time  which was frustrating. My writing also when I saw it it was not my handwriting it was not what I was used to it was kind of weird as well.  I’ve been a widower for just on 3 1/2 years and although I have four sons and four daughters in-laws and 7 1/2 grand kids  I have mostly dealt with my rehabilitation under my own steam with the help of my rehabilitation team of course .  The community based rehabilitation team were thorough kind and reliable we started with face-to-face meetings in my home but once the Covid had taken over we did them with telehealth calls which were just as beneficial. I can highly recommend if you can get  A referral to the community based system there are many benefits to it. Since that time I have returned to my job part time working from home for only 3 half days per week. I find that is enough for me at the moment As I still get quite fatigued. The fatigue is phenomenal it’s something I still find it hard to deal with as I am willing to work more or do more but the fatigue is like walking through thick warm numbing blanket of fog that only sleep can fix.  I also lost my license or was not allowed to drive because of the/but I’m glad I’m gladly back on the road again now with certification from my doctor and and M class license being a medical condition which gets reviewed next year. So all in all it’s been a journey and I hope that you can get Some tangible support.  I can only suggest you talk to your GP who should be able to recommend or arrange further therapy. thank you for your time I’m sorry I raved on so long but I hope you get the help you need kind regards Russ