Living with Cerebral Palsy

Several weeks ago, an author approached me via email and asked if I would like to read his book. He is a husband and father that just happens to have CP. I read the book – some parts twice! He has a good outlook on life and a great sense of humor.

I would like you to get to know him better, before reading his book Daddy Bent-Legs

My Interview with Neil Matheson

1. From your perspective, what is the most difficult aspect of being a husband and father with cerebral palsy?

I would say that hardest thing for me starting out was just trying to figure out where I best “fit” in the beginning – what my exact role was, and how I could best help out. Some of that is disability related, but a big part of it is just the fact of being a guy, I think. Women have a distinct advantage & head-start on the whole parent/child bond thing most definitely. And yes, I had to figure out how hard I could push my body physically while trying to find out what I could and couldn’t do … but, even so, a lot of it was just getting used to the idea of being a father and what that should all look like for me.

1 a) Of course, my cerebral palsy makes me a fair bit slower too – slower to move, slower to react, and more limited physically in general. All of the small things that able-bodied parents take for granted like the ability to run after, scoop up & carry a child (whenever, wherever and however). In truth, it’s all of those very small, simplest things that are the hardest to deal with by far. Holding hands with my son while walking? I can’t do it, my crutches get in the way.

2. Do you or your wife drive a vehicle that has been modified for your needs?

Although I did try to learn as a teenager, I never became comfortable with driving – my wife didn’t learn also. We used to own a wheelchair-accessible van (that my wife’s care-aids would drive for us) but it eventually got far too expensive to repair and maintain, so we now depend on public transit exclusively. Fact: having a disability (…with aids and accessible vans etc etc) is very expensive!

3. Do you live independently, as a family, or do you have help that comes in to take care of certain aspects of daily living, or help with your son?

We are able to live relatively independently. For the last seven years, Elana & I have lived in a condo that we pay the mortgage each month, and we are able to go out by ourselves as a family for trips to the grocery store, a restaurant or park. My wife Elana has Arthrogryposis and is confined to a motorized wheelchair and she has always required the help of 24/7 care-aids. They also help with our 3 year-old son, but we both take our roles as parents very seriously and take on as much of the parenting side of things as we can on our own.

4. What special aids or precautions do you have to take, to insure that you can keep up with your son and keep him safe? (i.e. baby gates, harness leash, cupboard locks, etc)

When Jake was a baby, Elana had a custom-designed baby carrier that attached directly to the front of her wheelchair. She also used a sling. As well, I will often use a scooter instead of crutches so that I can have Jake sit on my lap and have more control over him. I’ve never been a fan of leashes for children, though I know they serve a need for some people. From the start, Elana & I have always focused on establishing clear boundaries with Jake and his need to listen to us, and trust us, as his parents. Again, we started on this early (as a high-priority item) to ensure Jake’s safety at all times – and without question, cultivating Jake’s self-confidence, independence, helpfulness and trust has paid huge dividends. As far as ensuring a baby-safe home, that just seems to happen slowly and naturally over time all on its own. Babies are born helpless and don’t move around much (… or get themselves into unsafe situations) that whole first year. As a brand new parent when Jake was first born, I remember thinking how we needed to do so much changes and stuff to the house to get ready for a baby – but, in reality, you don’t. Soft, durable & easy to clean leather furniture gets a strong recommendation from me, though.

5. Do you both still work outside the home?

Elana & I both used to work at full-time jobs – Elana as an elementary school teacher, and me as a computer/technical support analyst. Shortly after Jake was born, I was laid-off and haven’t returned to work since – while Elana has scaled back her time at school to 1 1/2 days per week. The fact is, parenting is a lot of work – for anybody. Throw a couple of significant physical disabilities into the mix, and it can wear you down in a big hurry. For me, saving as much of my physical energy for Jake and Elana is most important. As things stand right now, I’m in no hurry to return to work at all and hope to eventually earn more money through my writing or photography and working from home.

6. What precautions do you take, in the event of emergency? (i.e. wear your cell phone, have an alert bracelet, etc.)

In emergencies, Elana & I both have cell phones, and a care-aid is usually with us or nearby. Elana has a rotating staff / schedule of 24/7 care-aids and for nighttime hours, we have a spare bedroom where the care-aid on duty can have her own personal space and sleep.

7. Does your family have a good support system?

Elana & I both have very supportive and helpful parents. They are all getting older though, so it is important that we can carry on ourselves with as much independence as possible (with help from Elana’s care-aids, of course).

8. What advice would you give to any disabled individual contemplating marriage and family, either with an able/disabled spouse?

My advice: Don’t let impracticalities and challenges of a disability dissuade you from going after what you really want. Everybody deserves a chance at happiness – and, in the end, love doesn’t care about impracticalities and disability. Real love happens in spite of impracticality.

9. What is your favorite thing to do as a family?

Jake is incredibly active and energetic, so Elana & I like to take him out for walks or to a park where he can run around and kick or throw a ball. We also enroll our son in different toddler sports / dance classes at our local community centre throughout the year. For me, any family time is fun. Even trips to the grocery store are fun when done together as a family.

10. What/who encouraged you to write Daddy Bent-Legs?

I first came up with the idea of writing a humorous, lighthearted memoir over twenty years ago. My whole life, I have always used humor to attract people’s attention, and I had never seen a book focused on life with disability that was more casual and funny. For me, it’s important everybody know that living with a disability – while sometimes challenging – is not all bad, awful or full of pity. Humor has always been my hook – a way of coping with my disability – and I wanted my book to reflect that. I worked on my book (and several different revisions) for a long time. I’d bring out my manuscript, tinker with it a bit, and then put it away again for another couple of years. Every two or three years, I’d tweak it a bit more – but it never felt finished. It wasn’t until the birth of my son that I felt I had a complete story. I started writing again in the summer of 2009 and it only took me two months to cobble together a full, finished book.

11. Do you plan on writing another book in the near future?

If I do end up writing another book, I don’t want to rush it. If it takes me another 20 years, so be it! In the meantime, I’m still busy trying to market Daddy Bent-Legs and I have been enjoying writing blog posts on my website about disabled parenting.

12. What would you like people to know about you, your family, or your book that I forgot to ask?

I love getting feedback from readers of my book and blog. I hope to continue to grow a loyal mass of followers on the web, I appreciate the support, and I still have even bigger plans for my book in the future…

I want to thank Neil for his very candid answers to personal questions. Many of my questions were based on similar inquiries regarding my own challenges with CP. It was nice to get the perspective of a loving husband and father who lives with like challenges and also loves someone with even greater struggles.

Please follow the links and check out his equally candid, funny, serious, and loving book. I wish him and his family success and continued happiness.

GUEST POST:

Cerebral palsy (CP) is a common congenital disorder that impacts muscle tone, movement and fine motor skills, including writing, balancing and walking. CP can even lead to other health complications, such as vision, hearing and speech issues, as well as learning disabilities. According to The United Cerebral Palsy Foundation, 764,000 children and adults in the US have CP.

Those who suffer from CP may have a difficult time just standing still or even breathing, which should prove to you just how challenging life must be for those with the condition. Fortunately, there is some encouraging news for those suffering from CP. Scientific American recently released a fascinating article about how nanomaterials may provide hope for those living with the condition. Let’s examine the details of a landmark study conducted on newborn rabbits that offers hope for CP sufferers.

Researchers at the Perinatology Research Branch of the National Institutes of Health have been the first ever to demonstrate that an anti-inflammatory drug delivered with a nanodevice can significantly improve CP symptoms among an animal. The experiment involved treating newborn rabbits with experimentally injured brains with either a saline solution, a drug known as N-acetyl-L-cysteine (NAC) or a dendrimer in conjunction with NAC, also known as D-NAC conjugate. The experiment revealed that the rabbits with CP that were treated with the D-NAC conjugate exhibited remarkable improvements after just one day. After five days, these same rabbits were able to walk and hop, which demonstrates an improvement in their fine motor abilities. Rabbits treated with the NAC alone also exhibited lower signs of inflammation compared to the untreated rabbits.

What exactly is NAC? It is a powerful antioxidant and inflammatory agent that is also being used to potentially treat autism spectrum disorders and Alzheimer’s Disease. According to Rangaramanujam M. Kannan, Ph.D., a chemical engineer and one of the researchers involved in the study pertaining to CP, the use of the rabbit model closely resembles the CP phenotype seen in humans. This is exactly why the findings of this study should offer real hope to CP sufferers. The study even revealed that the D-NAC therapy accelerated myelin production among rabbits. Myelin is vital to the proper functioning of the nervous system.

Some 764,000 American children and adults suffer from CP. Those who suffer from the condition face a difficult time carrying out even the most basic tasks since their fine motors skills are impaired. D-NAC therapy offers some real hope for those who suffer from CP.

Ryan Jones is an online instructor and coordinator for www.thecollegecity.com. Ryan is looking to attend graduate school earn a master’s degree in chemical engineering and was very fascinated by the results of this study.

I am His girl! (or boy, as your case may be) Don’t you think that is the most comforting thought in a world that has gone amuck?

I hope you took the time to watch the videos from the last couple of days. Not only did she survive her mother’s attempt to get rid of her, but she has such an amazing outlook on living with cerebral palsy.

I have always known that God doesn’t make mistakes. As an adult, I also learned that He allowed me to have CP for a reason. Therefore, I should use my life as a positive example, and help others, if possible.

But . . .

I must admit that I don’t think I have ever used blessed and cerebral palsy in the same sentence. I always thought of it more as a burden I had to endure. My attitude has been more like the saying: “if your life is full of lemons, make lemonade.

But, a blessing?

This woman could have chosen to feel sorry for herself, hate her birth mother, and figure out some way to make the doctor that tried to snuff out her life miserable.

Yet, she feels blessed. After all, she is God’s girl; and, she beat them. She survived and lived to tell about it.

Personally, I hope I can change my attitude. Rather than a burden I must bare as part of being His girl, I hope I can grow to KNOW that my CP is a blessing.

Do you feel blessed?

If you think about it, almost every aspect of our lives is rated, in one way or another. If we go to the doctor, we are asked to rate our pain on a scale of 1-10. Television shows are rated; and, if they drop to far, they are dropped. Even the groceries we buy are rated for their fat content, the intensity of their flavor, the varying sizes of a product, such as eggs.

You and I even rate the level of our disabilities. We know that brain injuries are not all created equal.

Oftentimes, people will write to me and ask me a question related with their disability. But, because I don’t know them or their level of functionality, it is really hard to provide an answer that might even be remotely helpful. Some will rate the level of their disability, and that helps some, but it is still difficult to speak to their needs, because I am not a doctor or therapist of any kind. That being said . . .

How do you Rate?

When asked to describe your disability, and your abilities, how do you rate yourself?

I have written several articles about living with cerebral palsy in the past. Although that in no way makes me an expert, it definitely increased my understanding of my own disability. It also gave me a better idea of how to rate my own challenges.

In layman’s terms, this is how I personally rate CP:

Mild – People with mild CP are often mistaken for any number of typical injuries that might make them walk with a limp or a uneven gate. People might mistake them for having one too many drinks. In some cases, they might not even be aware of the fact that they are living with CP, Others find out only after they start experiencing age-related digressions.

People with mild CP lead relatively normal lives, physically speaking. They might just exhibit weakness on one side of the body.

Moderate-Self-care is possible, although you might need aids, like can, crutches, or wheelchair to get around. You might have some learning disability, but you can still function independently from day to day, with little assistance from others.

Severe – you have physical and possibly mental challenges that make it impossible for you to take care of yourself. You often need a caregiver to help you dress, take care of your home, run errands, and simply help you lead a better life.

Profound- your body is not your own. CP makes it impossible to do almost everything. You are totally dependent on others for everything, and communication is extremely difficult, if not impossible. Even if you have a brilliant mind, it is locked away. However, in many cases of profound CP, severe learning disabilities leave an individual as dependent and helpless as an infant.

I am no doctor, but this is as easy an explanation of CP that I know how to give. Being a brain injury, there is absolutely no way that any one of us is exactly the same. What is difficult for me may be easier for someone else and the other way around.

So, how do you rate?

Personally, I am moderately disabled. I was diagnosed as a baby. All 4 of my limbs are involved. But, most people don’t notice my hands, unless I need to do something with my fine motor skills. Technically speaking, I am an incomplete paraplegic. Even when I could walk on crutches, I swung from the hips. I can move my legs a little; but, not enough to do anything. They cannot hold my weight, and I have very little ability to balance, even sitting up without support.

I have lived alone, held down full time jobs, and I can drive a car. However, as I age, arthritis is taking it’s toll. My spastic muscles are stiffer and I have lost a lot of mobility. Nevertheless, I consider myself very blessed to have the abilities I have, and I am leading a good life with family and friends.

Yes, I know when my birthday is; but, there are days that I feel MUCH older.

It was less than 10 years ago that I was raising 2 small children and going to college full time, as a single parent. It was only about 5 years ago that I was working two part-time jobs, while waiting for a full-time teaching position.

Yes, I was often very tired, but I managed. Today, I can’t imagine how!

I guess you have the energy you need to cope with your circumstances. But, when that energy isn’t necessary, your body allows itself to be tired. ????

Last night, we got home from church so late, I couldn’t think of writing a post. I barely stayed awake long enough to get my son off to school this morning. I needed a serious nap. Then, I fell asleep again, while watching a murder mystery before supper!

When my mom and I compare aches and pains, I feel a lot older than I really am.

Is it the CP? Does the disability affect us all adversely, in the aging process? Is it the Crohn’s Disease, because fatigue is one of the symptoms of the disease? Is it simply because I am not required to push myself in school or the workplace any longer?

How old am I Really?

So many questions without answers. Does your CP sometimes make you feel older than you really are; or is it just me?