Summer is upon us and my daughter has arrived which has been incredible. Little baby girl is here and her mom is also home for the next month which is great. We are getting to spend a lot of family time together and we are very lucky. Being able to spend guy time with my nearly 3 year old son, Will, who is growing up so quickly has been great. We have done all kinds of fun stuff lately; we have ridden on a steam engine, went to a work site and watched heavy equipment in action not to mention the airport to watch the big planes come in!

Being a teacher I try to cram all of my appointments into this wonderful time known as summer, so far I have been to my neurologist and my general doctor for a normal well-being check up! Not to mention my wife, our newborn and toddler son whom have all had appointments as well. Being nearly 3 and a pretty observant guy my son has figured out that going to the doc is an important part of staying healthy and living a normal life. He, his mom and sister are all doing great and the doctor always gives them stickers or a balloon to prove so. My doctors give me infusions, MRI’s and are constantly bleeding me dry in turn sending me home covered with bandages and band aids instead of toting a balloon.

Now that he is old enough to be aware of what’s going on around him he has started to take note of my well-being, in particular my gimpy leg and spastic twitches.  He has finally reached the “why?” phase of being a kid, which is both exhausting and rewarding. We try to explain as much as possible to him or show him an example that helps him better to understand “why?”  He is having a rough time understanding “why?” dad stumbles around and twitches all of the time? Recently he witnessed me stumble and wipe out and the look of terror on his face as I went down is something I will never forget. “Why did you fall, don’t do that!” Nothing beats being scolded by a crying kid as you try to lift yourself up off of the ground and make it look like nothing happened!

Will is a very quizzical little guy and when he sees me struggling he has been ordering me to the doctor to “get better” like I will take some magical MS cough syrup and be cured, I wish. We have had some time to check out my leg together and feel my cold toes and see that they don’t move at all, not like his wiggly little pigs. He points to my good leg and says “that one is good?” and I shake it around to show that it is indeed good. He points to the gimpy leg and says “this one is not working?” So I let it lay there and show him that it’s still just a big useless leg to which he responds “why?”  to which I have been telling him that “dad is sick”. This often times turns into quite the “why?” black hole but I think he is starting to understand that even though I’m sick, I’m ok? It doesn’t even make sense to me but he seems to be getting it.

Be a warrior today,

Donn

Most MS patients likely wait a long time before they receive a Multiple Sclerosis diagnosis. Since there is not a definitive test that positively discloses MS, it seems that neurologists are hesitant to give the chronic diagnosis quickly.  This is even more obvious when a child presents with MS symptoms. When our daughter was 10 years old, in 1999, it was not believed that children could develop MS. We lived with an alternative diagnosis of ADEM.  Acute disseminated encephalomyelitis (ADEM) is typically a one time episode with symptoms that mimic MS.  We lived with this diagnosis for almost 2 years while she experienced several attacks.  At this point, we were told that even though it was still believed that she did not have MS, she would be treated for the disease since the neurologists did not know what else to do.

After 8 years living with the ADEM diagnosis that was just being stubborn, we were given the official diagnosis. Because of living with the hope for such a long time that she would outgrow these attacks and be able to live a full life, denial was always our fallback.  As much as our adult MS specialist that worked along our pediatric neurologist was convinced she had MS, I think deep down we were hoping he was wrong and someday we would get our daughter back.  Now that we are 15 years into this journey, we know that she will never return to her former self. The best we can hope for now is that she slows her decline.  I imagine that adults faced with the same diagnosis also have a very hard time admitting that this is a chronic illness and it will impact their lives to some degree.

The hardest part about seeing your child or any loved one go through this disease is that there is nothing you can do to fix it. The best we can do is to be there for moral support.  The best thing we can do for ourselves as caregivers is to reach out to others who are also experiencing the same life altering situation.  We are lucky to have the internet and social media available to be able to find so many struggling with the same feelings.  I don’t know if I would have been able to get through the rough patches if not for social media and the ability it gives us to connect.  Even if you know of others with MS, every patient is unique in their symptoms. The better the ability to connect with others on the social media pages helps us immensely.

If you are a caregiver of a child with MS, please join me on the Facebook group Pediatric Multiple Sclerosis Alliance.  


#mscaregiver #caregiver #multiplesclerosis

I haven't sat down to write a blog in a while. Have been dealing with a flare and steroid hell. Hoping the worst is behind me. Trying to think of the positive way to get this information out. Unfortunately, I have been unable to build the kind of rapport with my new physician who replaced the old. I'm not a very big complainer so when I voiced my concerns to my previous physician, he immediately acted without me going through hoops. So let's just say, it's time for a change. For me as a healthcare professional (I am a nurse), this is very difficult.  I am usually very understanding about rules, time frames etc. that health professionals deal with on an every day basis.  What I don't tolerate is not listening or reviewing patients histories and acting appropriately. As much as it us a pain to obtain copies of records, MRI disks, make the change even if it's hard. You must be able to feel confident in your caretaker. If you switch and don't bond again, change until you find the right fit.  

On a positive note, the nurses who did my transfusions gave me some great advice. As my significant other (ex husband) is getting towards retirement age and could possibly be offered a buy out package, they suggested I use my 100 percent durable medical coverage now and order an electric scooter as I will probably be needing it sooner than later. Never would of thought to do that. I do use scooter for traveling but have always rented one. I'm heading to Bermuda in two weeks and found out that it is cheaper to just buy one outright than it would be to rent it for a week. I'm driving to the ship so I'll just throw it in trunk and will be all set. 

So thinking ahead, it may be many years before you need permanent wheels but if you have benefits and you pay for them use them while you can. 

I will be working with the website administrator soon to possibly have a link developed to donate supplies for other patients, or to do swaps or sell equipment patients are not using.  I know I have a wheelchair, shower stool and cooling clothing I can donate to start us out. Any feed back on this will help us decide on it's worth. 

Enjoy your summer fellow patients stay cool. 

-Susan


A BIT ABOUT SUSAN...Susan is a registered nurse who worked in high risk obstetrics at Brigham and Women's for twenty years. She is also a certified nurse paralegal. She is currently not practicing as she is disabled because of MS.  She was diagnosed 9 years ago with RRMS and has a daughter who also has MS.