EnableMe | enableme - stroke recovery and support

There are many stroke survivors who struggle to remain motivated and positive after years of therapy and giving it their all. We know that recovery is often slow and tests patience but the trick is to persevere and remain determined. Recovery is about setting short-term realistic goals and also being hopeful and having long term goals for the future. The key is to find that fine balance between being hopeful and realistic.

This post is designed to give you insight into the challenges that your therapists (health professionals) face with meeting therapy expectations. We will also provide tips on having conversations with your therapists about your goals and recovery.

Understanding it from your therapists’ point of view:

* Your therapist didn’t know you prior to the stroke, and therefore, don’t know what you were previously capable of. It’s important to first step back and draw your therapists into your world, your interests, and your goals. This will help them tailor rehab to your needs and interests and also help them to help you set realistic goals

* There comes a point when you will be discharged from rehab. This may be because you have reached your goals, or because you have reached the end of your therapy block. The latter is usually because public health services are restricted by the amount of therapy they can offer. This is an unfortunate reality and understandably very frustrating, particularly if your stroke was severe. In these cases, they key is to find creative ways to self-manage your rehab program (with the help of family and friends as needed). This may involve your therapists training your family to become the ‘therapists’, who will then provide the rehab once you are discharged. For those who are able, private rehabilitation is another option after discharge from the public system. See below on how to access private therapy with a Chronic Disease Management Plan.

Having conversations about goals and recovery isn’t easy, but hopefully these ideas will help:

* Firstly, write a list of your goals. Don’t worry about whether you can achieve these at this point. Once you’ve written a list, go back over it and circle the goals that are realistic now and that would make you feel good. Put any that are longer term or not as important on-hold. Your family and close friends will be able to help.

* Present your list of short and long-term goals to your therapist and ask them devise a rehab plan. Your therapist may have a different opinion about goals that are realistic for your stage of recovery. This is okay – it’s important for both of you to have an open and honest conversations about therapy and long term recovery. This list will be a starting point.

* Self-reflect on your rehab program: do your rehab exercises link to your goals? If you aren’t able to explain why you are doing a particular exercise, talk to your therapist. After doing therapy for a long time, it’s only natural and easy to forget the ‘bigger picture, however, knowing why you are doing each exercise helps to keep you motivated

* Know that it’s okay to take breaks. With your therapists help, work out a good time to take a break from your rehab program and review your goals.

Where to from here?

* Write that list of goals. Discuss and prioritise them with your family.

* You can use enableme to track your goals or call us at Stroke Line 1800 787 653 for help.

* Have a conversation with your health professional(s) about your therapy goals and long term plan

* Chat to your GP about a Chronic Disease Management Plan to access a limited number of subsidised therapy sessions privately. For more information: click here

Lisa (StrokeLine)

1800 787 653, Monday – Friday 9am-5pm AEST.

strokeline@strokefoundation.com.au

I love the sentence " your therapist didn't know you before your stroke " so true , the working relationship between both people is new and unknown as recovery begins.

A healthy respect for each other is a good start as this person now enters the stroke survivors world.

I found the sudden invasion of all things private difficult to manage so this was when I would take my mind elsewhere and think about other things.

It was a team effort in hospital and rehab , I didn't want to do anything to let the team down.

My recovery was hard work on everyone involved and I was totally aware of this and took as much ownership of my situation as I could at the time. My job was to recover.

I am an occupational therapist who provides education/ workshops to students and allied health professionals. I also provide rehabilitation services to community stroke survivors and have had ongoing contact over 20+ years with many people affected by stroke. I also conduct research about the intensity of practice, changes in rehab outcomes and other topics.

Not surprisingly,I also have views about the importance of hope in recovery. While some people's goals might appear unrealistic, I don't think we have any right to judge a person's goals - unless they involve financial, physical or others risks/ cost to that person or their family ( eg driving, return to work too soon, walking/running too early etc).

In my view, many things / gpsls are possible - but may take years to achieve. I know people who have learned to write, drive and walk after 10 years. When we see a person in the first week or month post-stroke, we cannot and do not know what that person will be able to do in one year or five years.

Therefore, in the absence of a crystal

ball, when I am asked what I think a person might be able to do/ achieve I honestly say, in most instances 'I don't know...but I so know many stroke survivors surprise me and others by achieving great things after many years. Do not be limited by what doctors or health professinals predict'.

Hi Sue and Annie,

Thanks for joining in the conversation.

I agree Sue, healthy respect between the therapist and client is so important. This can often take time to establish and may sometimes call for patience from both sides during the early stages.

Annie, you raise such valid points. Having hope is such an important part of stroke recovery. It's so important for us, therapists, as well as doctors, to be mindful of the language we use when discussing prognosis and recovery as we aren't able to predict recovery with certainty.

Thanks again,

Lisa (StrokeLine).

Hi all, thanks heaps for this fantastic post.

My dad is in the 5th week of his stroke, was admitted to private rehab 3 weeks ago.

His stroke is severe, full paralysis on his right side, but cognitively he is 100% ok. His speech is also very slurred, but we can understand him.

The reality of the stroke hit him hard in the past week and he has been crying a lot when we are with him. we spoke to the doctor who has prescribed him a low dose of mirtazapine, to help him sleep, we were told. is this common?

He recently has sensation on his right leg and hand again but can't move. but i am thrilled that he has some sensation. it gives me hope.

We are still hopeful for further recovery but a doctor ( replacement doctor covering the regular doctor's leave) spoke to my mum today told her that my mum should look at nursing home options.. & she had only seen my dad in the past few days

It was so heartbreaking for my mum as this was communicated so insensitively to her without a proper family meeting or consultation of what we'd want ( ie for him to transition home where we would have an OT access his accessibility requirements )

My dad's needs are high care at the moment, and reading this post it heartens me to hear that hope is such an important factor in communication