Post Impairment Syndrome and Cerebral Palsy

Richard_Scope

A common condition that adults with Cerebral Palsy live with, post-impairment syndrome, is a collection of symptoms and health problems that cause a great deal of discomfort, pain, and trouble with mobility. The exact issues this condition causes vary by individual, but often include fatigue, joint pain and arthritis, difficulty walking, poor posture, and weakness.

Post-Impairment syndrome is an issue in adults with cerebral palsy because it results from years and decades of damage to the bones, muscles, and other tissues in the body. This damage comes from the accumulated effects of moving and living with joint, bone, and muscle abnormalities. Good, lifelong physiotherapy and treatment are important for minimizing or preventing post-impairment syndrome, but when it occurs, there are treatments that can help make people more comfortable.

What is Post-Impairment Syndrome?

Cerebral palsy is a condition that starts in the brain and results from acquired brain damage, but most people with it feel the condition in their bodies. The brain damage impacts muscle tone, muscle control, bones, joints, posture, balance, and how a person moves. Everyone with cerebral palsy struggles with the loss of motor control and function to some degree, from challenges that are barely noticeable to almost complete inability to walk, and everything in between.

These motor issues can cause significant problems in childhood, but as a person ages, they cause even more problems. The years of moving in ways that are not optimal and of living with spastic muscles or malformed joints and bones ultimately cause damage that can lead to arthritis, pain, and weakness. Fatigue is also common because people with cerebral palsy use significantly more energy to move than people without motor issues. Together all of this damage and the symptoms it causes is called post-impairment syndrome.

When post-impairment syndrome begins depends on each individual, as does the severity of the condition. Those with more minor disabilities may never experience post-impairment syndrome or may only have mild symptoms that set in later in life. Children with severe cerebral palsy symptoms are more likely to experience the syndrome earlier and for it to be more serious.

Common Symptoms and Conditions Associated with Post-Impairment Syndrome

Post-impairment syndrome is not a strictly defined condition by symptoms because it can cause different symptoms and varying degrees of symptoms in different individuals. However, there are some challenges, conditions, and symptoms that are commonly seen in adults with cerebral palsy who are experiencing post-impairment syndrome:

• Arthritis and pain. The abnormal movements and deformities that people with cerebral palsy have can cause damage over the years that nearly always result in some degree of pain. The pain may come from repetitive use injuries, from arthritis, or from sore or imbalanced muscles.
• Weakness. Muscle abnormalities and many of the same causes of pain in post-impairment syndrome, also cause weakness over time, making movements even more challenging.
• Fatigue. Estimates are that people with cerebral palsy use three to five times the amount of energy to move in similar ways that people without the condition use. This leads over time to both weakness and fatigue. For many people with the post-impairment syndrome, fatigue is the biggest hurdle.
• Depression. Although not always included as a symptom of post-impairment syndrome because it is not physical, adults with cerebral palsy may be susceptible to depression after years of struggling with the condition and with painful symptoms and poor mobility.

Preventing Post-Impairment Syndrome

It may not be possible to prevent the development of post-impairment syndrome, but good and consistent treatment throughout a child’s life can prevent the worst. There are many elements to the treatment of cerebral palsy, from medications and surgery to physical therapy and mental health therapy. The treatments needed to depend on the needs of each individual, but the more comprehensive and consistent treatment is, the better chances a child has of minimizing later post-impairment syndrome symptoms.

What is important to developing lifelong mobility and avoiding as much damage as possible that can lead to later pain and disability, is correcting muscles imbalances, muscle tone, and bone and joint deformities. For some children, surgery may help make corrections that will lead to easier movements and less damage over the years. Most can also benefit from ongoing physical therapy that helps to develop muscles, balances strength in pairs of muscles, and teaches someone to walk and move in ways that will result in less damage.

Treating Post-Impairment Syndrome

Even with good lifelong treatment, many children with cerebral palsy will end up with post-impairment syndrome. There are many different ways it can be treated, although like cerebral palsy itself it cannot be cured. Some of the underlying issues may be treatable, like surgery to repair bone damage, but most of all treatment involves addressing symptoms.

For instance, treating the pain of post-impairment syndrome may involve a combination of medications for pain, physical therapy, and gentle types of exercise, like yoga. Fatigue and weakness can also be treated with physical therapy and exercise. Lifestyle changes can also help, like improving sleep habits and eating a healthy and nutritious diet. Using more mobility aids and working with an occupational therapist can help make doing daily tasks easier and safer, as falls are more likely when weakness, pain, and fatigue increase.

For depression and other mental health issues, there are many treatments that can help. Working with a therapist or counsellor can help to change negative thoughts and behaviours. Antidepressants may be useful as well. People going through this difficult condition can also benefit from support groups, chatting online or in person with other people experiencing the same challenges. It is also important to rely on a close network of friends and family for social support to boost mood, but also for assistance with ordinary tasks when pain and fatigue become overwhelming.

Consequences of Post-Impairment Syndrome

In addition to the direct consequences of the years of living with cerebral palsy, like pain and fatigue, living with post-impairment syndrome can impact other areas of life. The pain, for instance, can make sleep more difficult, which in turn increases fatigue and sometimes depression. Being fatigued can lead to dropping out of social engagements or missing work, which can lead to social isolation and financial issues. It is important to get help for post-impairment syndrome because it goes well beyond just causing pain and tiredness to affect all areas of life and quality of life.

Living with Cerebral Palsy as a child isn’t easy, but even as an adult the challenges do not necessarily get easier. The accumulated damage of years of living with this disability can cause this uncomfortable, painful, and damaging condition. If you live with cerebral palsy or have a child with the condition, be sure to get the best, most consistent treatment and therapies to prevent the damage that causes post-impairment syndrome and to ask for help when you experience it later in life.

forgoodnesssake

I read this recently and it is very interesting...but largely ignored/overlooked by the medical profession.  Very glad this sort of info is now getting more airing.

Adrian_Scope

Cheers for making this post @Richard_Scope. It seems especially relevant to our current theme on the Community where we're examining Cerebral Palsy alongside a secondary diagnosis.

yorkshirebell

Many thanks  @Richard Scope, for describing how I feel daily, And putting it into words the daily struggle we all have as a older person with CP, you are the first person who totally understands, I feel uplifted and no longer alone, and for that I truly thank you.

Chloe_Alumni

Welcome to the community @yorkshirebell! Great to have you here.

yorkshirebell

Thank you, took me a long time to leave a comment, but so glad I have finally made contact with all the lovely people out there, 

Richard_Scope

Hi @yorkshirebell
You are most certainly not on your own and thank you for your very kind words. I look forward to having a chat with you

WestHam06

Hi @Richard_Scope
                                   Thank you so much for sharing this information with the community. It is very interesting and again highlights the ongoing difficulties living with Cerebral Palsy can have. Thank you for sharing  

WestHam06

Hi @yorkshirebell
                            Welcome to the community, thank you for joining us. Please feel free to join in with any conversations taking place across to forum, there are many lovely people on the community. Please feel free to ask any questions you may have, there will be someone on the community who will be able answer. Well done for leaving your first comment, we are very glad that you have joined us. Thank you.  

yorkshirebell

Hi WestHam06
Thank you so much for your kind words, it’s nice to join a community who truly understand every aspect of dealing with CP, having Cerebral Palsy as a child is not easy by a long way, but dealing with CP and getting older has thrown up a whole lot of new and challenging situations, Sometimes making it a very lonely place, so to you and the community I thank you for excepting me

WestHam06

Hi @yorkshirebell
                            How are you? How has your week been? Thank you for sharing your views on Cerebral Palsy and how it can affect people as they get older.  I am so sorry to hear that at times you have felt lonely, please know that you are not alone and if you ever want to talk there will always be someone on the community who will listen. We are here to support one another. I also have Cerebral Palsy and I am beginning to appreciate affect that it has had as I have become an adult.  Thank you. 

yorkshirebell

Hi WestHam06, I’m so sorry it’s took me so long to reply to you, it’s the time of year when my brain turns to mush and I can’t think straight, along with a lot more people I would think, it seems that these days I put in a lot of effort to do something, and never really get anywhere, hope your coping ok with the weather turning colder, it doesn’t do much for stiff painful legs,arms, in fact all you body, it’s the worst time of the year for stiff limbs, may you all have a peaceful Christmas and a healthy new year, take extra care everybody.

WestHam06

Hi @yorkshirebell, 
                              How are you? Great to hear from you, I understand where you are coming from with regard to the weather affecting stiffness in the limbs and joints. It is understandable that at this time of year it can be hard to think completely straight as there is so much going on, you don't need to apologies. It is important to remember that when we put effort into something it can feel as though we don't get anywhere but by putting effort into something it shows you care, have a passion or want to develop or  improve something whether it be for someone else or for yourself and so in small steps gradually we are getting somewhere. I hope this way of looking at things helps or makes sense, it's how I try to look at things when I become frustrated. I hope you have a truly Merry Christmas, what are your plans? Thank you. 

WestHam06

Hi @yorkshirebell, 
                             How are you? How was your Christmas? Thank you.

yorkshirebell

Hi, sorry for leaving it so long to reply, its brain fog as well as everything else yes my Christmas was good thank you so much for asking,, just spent it with family, did far to much sitting around, now it’s a new year and I’ve got to get some exercise, or I think I will stop altogether walking, have you or do you know anybody who has used a chair gym, saw it on amazon but I’m not sure if I will to use it. How  was your Christmas and new year hope it was good, have you made any plans for the year ahead,,

Richard_Scope

I have a multi-gym with a seat. I have found it really helpful in keeping the exercise going or when I'm lazy it can be used for hanging shirts!

Chloe_Alumni

Hi @yorkshirebell, really glad to hear you had a lovely Christmas! 

yorkshirebell

Hello Chloe
Really nice to hear from you, yes it was ok thank you, hope you had a nice one too.

yorkshirebell

Hello Richard - scope
Thank you for your reply, it’s much appreciated , this chair gym might be the same as yours, it’s mostly to work your arms and shoulders, it can be used to strengthen legs but I wouldn’t be able to use that, I found I haven’t as much stretch in my arms as I used to have, I think it’s with using my arms to pull me up, and people over the years pulling me up with my arms, I blame years of wear and tear for pain in my shoulders,  I don’t know if I’m right, but I think arm exercises might help, that’s were the chair gym might help, I’ve looked on the internet for wheelchair exercises but there’s hundreds, any advise on this would be appreciated, as your multi-gym helps you I might take the plunge and get this chair gym 

WestHam06

Hi @yorkshirebell, 
                              How are you? I am pleased to hear that you had a good Christmas and New Year. I had a good one too, thank you for asking. The chair gym sounds like a great idea, I personally have never had one but I go to my local gym when I am able to in order to work on strengthening my arms. Please let us know if you do decide to purchase one and how you get on with it. Best of luck. I do have some rough plans for the year ahead but I do tend to take a day at a time, how about you. Thank you. 

Welli

Never heard of Post Impairment Syndrome before (PIS).  I am in my 60's and some of the conditions that have been described here are some that I am currently experiencing.  Thank goodness I have a 'diagnosis'  to put to the experiences.  Thanks.