Diplegia and Working in Middle Age

Tommyc38

Hello there Scope community, Thomas here. I am soon to be 43 years old, I work full time, I have Dieplegic CP. I am finding more and more the impacts of physical and mental fatigue are leaving me exhausted during and after work, I actually work for a Disability organisation, who have already given me reasonable adjustments, and still I am exhausted somedays, both during and after the work days, what I want to know is, are there any of you out there with my form of CP working well into middle age, and if it's too difficult to continue, how did you deal with the decision to leave work? further can you seek medical retirement due to CP. I just don't know how much longer I can keep working, any advice or insights would be greatly appreciated.thanks 😕

SaraC_Scope

Hi Thomas

I'm Sara and have right sided hemiplegia. I've been experiencing similar problems to you. I'm approaching my 48th birthday and this last year I've had increased pain in my left side from overuse. I have wear and tear arthritis in my knee and hand.

I still work full time, but recently looked at reasonable adjustments as the pain in my hand can be unbearable some days. I'm starting to acknowledge I need to put plans in place to manage all of me, not just my right side. In my future I would like to work less days as I'm aware of how CP is impacting me as I get older.

When I was in my 20's and my CP didn't impact me that much, I suppose I thought it would always be that way, now things are changing, but I've accepted this is a life long condition and although my CP hasn't changed, it has affected other parts of me.

I understand you're thinking of making some big life decisions. Take time to think this through. I don't have knowledge around medical retirement. I've tagged @Richard_Scope into this thread, in case he has some advice.

Kind Regards

Sara

Tommyc38

Hi Sara, thank you so much for the insight and for sharing your story, I totally empathise with you, it is so daunting trying to make the right decision, and what if it's the wrong one, it's exhausting these days just getting around 😊

Richard_Scope

Hi @Tommyc38

I'm 46 and I have quad CP. I use a wheelchair full-time which has made a huge difference to me being able to do the things that are required in life. I fully understand though, it might be a difficult option for some as it goes against everything we were encouraged to do. But it's not their body or their life!

There are things that you can do to help manage the changes in your mobility and pain. It sounds counter-intuitive, but exercise is very beneficial. Especially, low impact exercise like swimming. Any kind of movement at whatever level you can manage.  

You are not alone in feeling like this. Ageing with CP is a new challenge for sure.    

We CP folk use up a lot more energy than non-CP people, up to 5 times more because of the way we move or walk etc, this can lead to fatigue.   

The key is learning about your body and planning your day as much as possible. Plan the bigger tasks at the time you have the most energy etc.   

There is also something called Post-Impairment Syndrome that is related to CP this refers to additional conditions that might be acquired by someone already living with CP. 

Here is an excellent blog post about it:   

What Post-Impairment Syndrome Means to Me   

What I would advise is that you book an appointment with your G.P. (telephone appointments will work too) and talk to them about how your CP has changed. And get a referral to a neurologist or neuro-physiotherapist. You can mention the CP Care Pathway which instructs G.P.s how and when to refer to UCLH Cerebral Palsy Service.   

Diet is so, so important too.

It is not so much how much you eat; it is more the case of what you eat. 
 

High-sugar/refined sugary foods (my weakness!) are particularly unhelpful. They give you an instant energy hit but it is short-lived and leads to a sugar crash, which coupled with the fatigue we may experience anyway can give us a double whammy. Also, sugar, in large amounts is inflammatory to joints like knees, ankles and hips. 
 

Hydration is important to minimise fatigue and stave off brain fog. Too much caffeine in coffee and tea will dehydrate you and exacerbate your startle reflex if you have it. 
 

Try and incorporate 'good fats' into your diet. Things like avocado, and nuts. Slow energy-release foods. 
 

The 'thing' about people with CP needing to eat more calories gets mentioned regularly but maybe it would be clearer if we added the caveat "people whose muscles are doing a lot of work need more calories". So certainly, people who have a lot of spasms or other uncontrolled movements or (for example) use a lot of muscle energy to compensate for their walking gait, may need to consume more calories than the general population.  
 
Of course, CP is a very diverse condition and some people with CP have comparatively sedentary lives so require fewer calories. There are a significant number of people who struggle to maintain an appropriate weight and need support to avoid excessive weight negatively impacting mobility etc. 
 

There isn't really a specific diet that is beneficial per se but there are foods that definitely help us to remain healthy and are beneficial to our condition. 
 
Here are a few: 

 
Eggs for protein and Choline, choline helps with mood, memory and muscle control 
Avocado high in good fats and calories to aid exercise 
Nuts high in good fats and fibre also protein 
Dark leafy greens contain B vitamins and fibre 
Oily fish high in omega 3 oils and vitamin D to support brain and neurotransmitter function 
Whole grains contain probiotics for healthier digestion 
Greek yoghurt high in calcium and protein 
Ginger is full of antioxidants, which may protect the brain by combating oxidative stress. It also promotes blood flow, which allows neurons in the brain to absorb more oxygen and other essential nutrients for optimal functioning. 
Turmeric antioxidant and anti-inflammatory properties 
Olive oil antioxidant and anti-inflammatory properties 
 
Remember to hydrate!  
 
Any diet must be in partnership with activity at whatever level you can manage. Choose low-impact exercise like swimming, it's kinder on our ankles, knees and hips. 

Vitamins and CP 

Please speak to your GP before starting a supplement regime.

Individuals with cerebral palsy can greatly benefit from a diet packed with healthy foods. However, oftentimes it can be difficult to know which foods are best. Consulting with a dietician can provide clarity in this area. 

Whether or not one chooses to work with a dietician, it can be helpful to know what some of the best minerals and vitamins for cerebral palsy are in order to make an informed decision about which foods to eat. While consuming essential minerals and vitamins for cerebral palsy through food is optimal, many benefit from using supplements to ensure they have filled their nutritional needs. 

Below is a list of 7 of the best supplements, minerals and vitamins for cerebral palsy that boost brain function and help heal the body. 

1. Vitamin C 

In addition to being essential to many functions within the brain, Vitamin C is potent in antioxidants, which combat free radicals and prevent oxidative stress. Since oxidative stress may cause or increase memory loss and depression, which individuals with CP are already more vulnerable to, this antioxidant effect is especially beneficial. 

Vitamin C also enhances the synthesis of norepinephrine, which is a neurotransmitter (chemical messenger in the brain) that improves focus and energy. It’s also crucial for maintaining bone health because of its involvement in gene regulation that influences bone development. 

Citrus foods, such as oranges and grapefruit, tend to be excellent sources of vitamin C. 

2. Vitamin B12 

Vitamin B12 keeps nerve cells healthy by forming the cell’s myelin sheath (a protective covering for axons). It also helps promote neurotransmitter signaling to help regulate mood, modulate the body’s stress response, and prevent memory loss. 

Vitamin B12 deficiency is associated with memory loss, depression, weak muscles, digestion problems, and irritability. These conditions are common among people with cerebral palsy. 

Foods that are high in vitamin B12 include fortified cereals and seafood such as clams, trout, salmon, and tuna. 

3. Calcium and Vitamin D 

Calcium and vitamin D work hand in hand, and are necessary for the bone health of children with cerebral palsy. When individuals with cerebral palsy don’t receive adequate nutrition, they are at risk for malnutrition. This leads to weak bones that are susceptible to fractures. 

Vitamin D helps the body absorb calcium, which is essential for strengthening the bones. Nervous tissues also use energy from calcium to stimulate nerve impulses and regulate muscle contractions, making calcium essential for movement in addition to bone health. 

Calcium and vitamin D can be found in dairy products, such as milk, yogurt and cheeses. Dark, leafy greens are also excellent sources of calcium, while fish is rich in vitamin D. 

4. Magnesium 

Over 75% of individuals with cerebral palsy experience spasticity (involuntary muscle contractions), making it difficult to move and eat effectively because their muscles continuously contract. Magnesium may reduce spasticity and increase range of motion by relaxing the muscles and promoting nerve function. 

Magnesium may also help individuals with CP who experience gastroesophageal reflux disease (GERD) and other digestion problems. It is used in laxatives, heartburn and upset stomach medications to relieve constipation, relax the muscles in the digestive tract, and neutralize stomach acid. Just like calcium, magnesium is essential for bone health and preventing osteoporosis. 

High levels of magnesium can be found in legumes, nuts and dark, leafy greens such as spinach. 

5. Zinc 

Zinc plays an important role in the brain, influencing a variety of functions such as learning, memory, and mood. It promotes communication between neurons (brain cells) and regulates neurotransmitter activity. 

Because children with cerebral palsy often have learning difficulties and mood swings, ensuring that they are not zinc-deficient may boost their cognitive abilities and reduce emotional outbursts. 

One of the best sources of zinc is oysters. Other sources include meat and fish. 

6. Omega-3 

Omega-3 fatty acids are essential for brain development and the maintenance of brain function throughout life. Omega-3s can be found in fish oil or flaxseed supplements. DHA is a type of omega-3 that regulates nerve growth and has neuroprotective effects. 

Children with cerebral palsy who have learning difficulties may benefit from omega-3, as it helps improve cognitive functions such as learning and memory. Studies suggest that omega-3s may promote muscle, joint, and bone health, which is fundamental for impaired movement. 

Fatty fish and nuts are often high in omega-3 fatty acids. 

7. Probiotics 

Eating probiotics has been shown to promote digestive health, reduce constipation, and increase immune cells in individuals with cerebral palsy. Probiotics increase healthy bacteria in the gut, which is essential as many individuals with cerebral palsy experience digestive problems. 

Furthermore, since the gut and brain are connected through biochemical signalling, good bacteria levels in the gut allow for the production of neurotransmitters that improve mood and brain function. In fact, 99% of serotonin (the ‘feel good’ chemical) is made in the digestive tract. Therefore, probiotics may help not only with digestion but also with cognitive functions and overall mental health. 

Yoghurt and kefir are two of the best sources of probiotics. 

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Tommyc38

Hi Richard Thomas here, it's so good to know I'm not the only one struggling or having to adapt, the information you provided is excellent o will definitely follow it and make those changes, I will definitely make an appointment with the GP and advise them on the care pathway, Great stuff!

Richard_Scope

@Tommyc38 if you would like to, why don't you join us at the CP Network? We get together once a month via Zoom. You'll certainly be in good company.

Tommyc38

Richard that sounds like an excellent idea, thank you for the invite

dblg0503

Hello

I have the same problem. After 40 I started to feel much worst.

I was working since I was 18. During period of my work life, I left my job twice. I took a year off, had rest and went back to work. Now I am at that stage again. But also I fear to leave job, as I am aware how difficult it is to find one.

I often think, I wish we have a "disability leave" something like maternity leave, to allow disabled people to take a long rest and come back to work.

Tommyc38

Hi there thank you so much for sharing this with me it's really difficult to make the right decision..I totally agree with you about the Disability Leave idea

Jimm_Alumni

There is a non-mandatory form of "disability leave" which some companies sign up to. It is quite rare I find though. The new government have mentioned they are looking to bring in more worker's rights. Things like a right to flexible working (working hours, working from home) and more. I wonder if more about reasonable adjustments might be included?

Tommyc38

Jimm thanks for this, this is really interesting I must research it, I have been off for 3 weeks on Sick leave, and my employer has already contacted me looking to meet to discuss the outcome of an occupational health assessment, despite the fact that my GP has signed me off for 2 months, I find this odd