Posts for category ‘multiple sclerosis’

Thursday was too hot and humid for me. It was in the 90s with high humidity. This might be okay for the rest of the country but it is way too hot for New England.

On days like this I just swelter. I have multiple sclerosis. One of the symptoms is a problem with heat. On the one hand it can take a lot out of me but on the other I love hot showers and baths. I can stay in them for hours at a time. I’ve been known to fall asleep in the tub.

I also get cranky and have a difficult time listening to people without getting escalated.

My post is not about multiple sclerosis today however. It isn’t even about the heat. It is about what happened on Thursday.

These are the days that I have scheduled for doing handyman work for several of my clients. On that day I had to paint the inside of a woman’s porch. At the same time Max is home from school this week. He gets four days off between regular school and his summer program.

I decided to take him with me while I worked. I always remember the times my Dad used to take me to work with him. Since he had several jobs I could go with him after school and on weekends. We were together a lot and these were the best times!

I don’t have the opportunity to take Max with me because most of my work is at home. On the days I am doing pca or handyman work he is in school. But since he had a day off he came with me.

It is not the first time he has painted; he once helped me paint this woman’s back porch. He did a good job so I wasn’t too worried

On this day we were tackling the ceiling and the posts around the screens. The first thing I did was to start him on the bottom of one of the screens while I started prepping the ceiling.

I explained to him exactly what he needed to do and what to watch for. I also told him to take his time and be careful about getting paint on the floor. I had newspaper laid down and up against the boards so I assumed it would be okay. I mentioned that it should take more than five minutes to get it down. He generally likes to speed through any project he is working on.

I then started on the ceiling while keeping an eye on him.

Dads will agree with me that it is so nice to watch their sons tackle jobs like this. Not only do they learn skills to use when they get older but also when that day comes Dad will be able to just sit back and watch.

So that side of me was primed. But the other side of me was still very cranky. He proceeded to ignore my directions and do things his way. These included getting paint on the floor; arguing with me; getting disrespectful; and being disconnected. It seemed like his ADHD was in full swing.

The board he was painting took a half an hour but he only had the paint brush in his hand for four minutes. The rest of them he was doing the other things I mentioned.

As a result I wasn’t very respectful to him. I kept speaking to him sternly. He finally decided that he didn’t want to paint anymore. Another “DUH” moment! After being badgered so much he didn’t feel confident enough to continue painting.

My client ended up giving him some other chores to do but by this time he wasn’t very happy. He would start them and then give up.

I thought about it and realized Dad was doing well that day (please read sarcasm here). I brought him back to the porch and suggested he get up and use the roller to help me paint the ceiling. This was just what he had been waiting for all day and he spent quite a bit of time up there.

He was doing a decent job but Dad still couldn’t keep from snapping at him so he soon gave up.

After the job was finished we headed home. I thought about everything that happed as I drove along. As we pulled into the driveway I told Max he had one more task to do. I directed him to come to the driver’s side door. When he did I pulled him in and hugged him. I kissed him on top of his head and told him I loved him.

His response was a very gratified smile. After that he seemed to have forgotten what a tough day it had been. He couldn’t wait to get inside the house to tell Mom about the grand day he had painting the ceiling.

Whatever the reason for my crankiness; I don’t care if it was the heat, my multiple sclerosis, or Max’s ADHD that caused it. Here was a great father and son project that I couldn’t recognize. Hopefully I haven’t turned him off of painting after the day he had.

I have to start seeing when we are in father and son moments and work with that. I’m hoping that my hug and kiss was enough to get passed our tribulations that day.

And here’s to many more moments where I can pass on knowledge. Hopefully I can relax and just enjoy those times.

I’ve talked a lot about my son Max and how he has been diagnosed with Bipolar Disorder. But I’ve been starting to wonder lately if I have some of the symptoms too.

Bipolar was once known as “manic-depression“.  Someone with this condition tends to have mood swings that run from being very “high” or manic to very “low” or depressed.

At a recent session my therapist suggested I explore this and write a post about it.

I’m not sure it is that bad. I think about my Multiple Sclerosis. It is very mild. In fact it is the “funny you don’t look sick” variety. If I had primary or secondary progressive I would probably be in a wheel chair right now.

Perhaps it is the same with this possible manic depression of mine. When I was with my therapist I talked about writing these posts. As I told him, some days I can write 4 or 5 at a time. But then on other days I moan and complain.

“Oh why can’t I write today?”

“I have soooo much to do.”

“I’ll never get anything done!”

A little whine here, and another one there, and I finally get some work done.

I had him laughing at this point and he thought maybe I should be a comedy writer. Hmm, I had never thought of that.

But back to the situation at hand.

Just like with my posts, some days I can plow through everything I need to get done. After which I am looking for more work. If any stressful situations arise like perhaps Max is having some terrible tantrums. I can take care of them very easily and everyone is happy.

But then on other days just trying to put one foot in front of the other is a major chore. I just want to lie down and sleep rather than make any kind of effort at all.

On days like this I get grumpy and I’ll snap at anyone that gets near. Max better not have any problems because I become very strict and stern and expect him to jump when I snap my fingers.

On those days Max will say, “Daddy, why are you talking to me in your Boston accent? I don’t like it when you do that.”

People from Boston please don’t be insulted to read this. I grew up there so it should be understandable I might have one. But I don’t think he really knows what that kind of accent sounds like. It is just a name that he has attached to the way I speak to him at this time.

But another thought occurred to me as I was writing the paragraph on Multiple Sclerosis. Maybe the high energy I feel is normal energy for most people. That is, what people feel every day is what I feel in spurts. Once I accomplish all the work with this energy I get totally wasted, tired, and lethargic. And this is what I see as my “depressed” phase.

There are other theories that may address this as well. For example, there is the idea that people that have a disorder such as ADHD or Bipolar may actually be throwbacks to an earlier time. When we were a hunter gatherer society, the gatherers worked every day doing the same thing over and over again. They developed energy to help them through their work.

The hunters on the other hand only needed energy when they were killing their prey. During “off times” or while walking through the forest they didn’t need energy so they didn’t have much. Energy was only required in spurts. Maybe I am a hunter.

Blood types are yet another possibility. The theory says that Type Os have a lot of energy, can eat just about anything, and can exercise enough to become body builders. Type As on the other hand can only do mild exercise and theoretically should be vegetarians. I am a Type A.

There are many possibilities. Which is the real one? Could even be something else. What ever it is I can keep my therapist laughing as I whine about not getting any work done.

I generally don’t talk about me very much in these posts. I have been more interested in sharing information about other people in my life. These include my son Max and people that I support through my pca, yard work, and handyman work.

Today it is different. This was the day to mow my lawn. It is not a particularly warm day. It is in the 70s and may reach 80 F. But I have multiple sclerosis. Any overheating can make my symptoms worse. Generally, for me, I get very hot and lethargic.

For this reason my lawn can take 2 to 3 hours spread over 2 days to mow. And I always feel knocked out when I am done. It can even be difficult writing a post. My mind tends to feel like mush.

However, I am one of the “funny you don’t look sick” people. Others are surprised if I mention that I have MS. I look healthy and I generally have enough energy to take care of others. I just collapse when I get home.

Today I keep stopping and then continuing to write this post. I’ve taken a warm shower which helped cool me down but it’s a struggle. I have a lot more to do today including selling a client’s car, and moving a lot of suitcases for Suitcases4Kids.

I have a couple of clients who are much much more affected than I am. They are in wheelchairs and need the help of a pca 7 days a week mornings and evenings. One of them still works from home; she won’t give up. This is despite having to get help moving from her bed to chair to bathroom.

Even though the heat is terrible for her she still loves to get outside in the summer. She tools around town on her scooter checking up on longtime friends. And she works in her garden. She weeds, plants, feeds, and waters. It is fairly large and I must say each year it looks more beautiful than the last.

The heat bothers her immensely; perhaps more so than me. Because of that when she goes out she wears a Cooling Vest. She puts it on and then loads it up with ice packs that she keeps in the refrigerator freezer. In this way she can keep her temperature down. The result is very little overheating and some relief from her MS symptoms.

I have never used one of these vests but I’m starting to think that after seeing how successful she is with it that I may get one. I find that as I get older the heat affects me more and more. I want to continue to work and this looks like it can help me too.

This is an example of what a Cooling Vest looks like:

This vest is light weight, only 5 pounds. One size fits all and comes with 10 reusable cooling packs. The advertisement says that it can be worn under clothes however my client and others that I have met generally just wear it over their clothes allowing them to easily put it on or remove it.

The Cooling Vest link brings you to the Amazon website where you can find out more about it. If you like it and choose to buy it please note that I do get a small commission. However, other than that Amazon does not pay me to sell their products. I suggest them only to help bring some improvement into the lives of my readers and their loved ones.

As soon as I finish this post I will be going to the YMCA to swim with my 8 year old son Max.  Once he sinks his teeth into something we have to do it constantly until he finally gets bored.  For example, on February school vacation we spent 4 hours a day at the Y playing basketball and then cooling off in the pool.  Since then he hasn’t had any interest in it.

But a couple of weeks ago he rediscovered swimming.  As a result we have been getting into the pool any afternoon he is free.  What I mean by this is that my son has many diagnoses such as bipolar disorder, adhd, aspergers, and odd.  Several days a week someone works with him on his issues:

• Mondays he works with a counselor and other kids to learn how to interact in social groups.  Many children who have one or more of Max’s diagnoses, like him, have problems being with others their own age.  They get together to find out how get through them.  We have time to swim after the class is over.

• Tuesdays we swim.

• Every Wednesday he has a half day from school so in the early afternoon he works with a play therapist.  Later on he goes to a science/dramatics class with other kids like him.  It gets out late so there is no time to swim.

• Thursdays after school he meets with his child advocate.  After it is done we can swim for awhile.

• There is no swimming on Fridays.  He spends the afternoon with his mentor and they get done late.

As you can see this allows us 3 days.  When he is in the pool he divides his time between playing and doing laps.  He can swim the length of the pool round trip over a dozen times.  Before and afterwards he is an octopus climbing all over me.  Or perhaps “jellyfish” is a better description.  It can get annoying at times.

In the long run it doesn’t bother me.  We will keep going until this obsession wears off and he goes after something else.  And you know what?  I will keep enjoying it until the time comes because if it wasn’t for my boy I wouldn’t get any exercise.  You see, I’ve never liked to do any physical stuff.  This isn’t because I’m lazy, though I might be a little.  It is because I have multiple sclerosis; I always found it an effort to do the physical things required to keep me healthy.

That’s not to say I don’t do anything.  I found early on that if I skipped all exercise that I very quickly get to the point that I have difficulty walking.  I have also gone through periods when I cannot use my hands.  This happens when I have been ignoring what I should be doing.  So I generally make it a point to at least to walk as much as possible.

This is where Max comes in.  He has a lot of anxiety so he doesn’t like to do things alone.  He has difficulty making friends so Daddy is generally his playmate.    I have to force myself to do the things that he likes so much like biking, running, hiking, mountain climbing, and anything else that requires a lot of energy.  I cannot just stand around and watch; to be with him I have to do all of these things too.

Just like anyone else the more I keep moving, the easier it gets.  It has made me realize that what I have been doing happens to a lot of other people with MS and perhaps other diseases and disorders.  We make excuses to justify not doing what we need to.  I’m not suggesting everyone does it but certainly I’ve been doing it around exercise.

Much as I enjoy doing the cerebral stuff, like writing, physical work is fun and I have to keep doing it.  My wife is always after me for just sitting in my chair all day researching and typing.  Thankfully Max comes home from school and drags me out the door to get some fresh air.  Because of him my arms and legs are solid and my exacerbations have diminished.  Not only that I’m getting my daily dose of Vitamin D from the sun!

Though I don’t like the fact that Max has to deal with all of his disorders the upside is that we both keep physically active and are healthier because of it.

I know several people with Multiple Sclerosis that will read this and say that it is alright for me but they cannot do it for this reason, or that one, or something else.  But my answer to this is, don’t give up!  In my PCA work I have a couple of clients with MS.  Neither one can do the things that Max and I do but both have physical therapists that help them keep their muscles toned and strengthened as much as possible.  At the same time it keeps them in good spirits.  How well I know how depressing it can be when I’m not moving at all.

The bottom line is, don’t let excuses get in the way.  Don’t give up and keep moving!

I just came from a wake.  I hadn’t seen the woman in a good 15 years but since she was the mother of a close friend of mine I couldn’t miss it.  It brought up a lot of memories; most of them surrounding my multiple sclerosis.

I first met Chuck in 1987.  Though we had both worked for the same company since 1979 it was quite large and we were in separate locations.  Our groups were merged in 1986 but since I was always working at distant clients we didn’t meet until the department threw a party for him celebrating his upcoming wedding.  At the end of the night he ended up giving me a ride home.

In August of 1989 I was sitting in my office when suddenly my eyes unfocused.  They actually felt like they moved in different directions.  My left eye went left and my right eye went right.  It was scary.  I went to the hospital and they wired me up, doing EEGs, EKGs, and MRIs.

The end result was they believed that I might have multiple sclerosis.  But their decision didn’t come from their testing even though they thought they might have seen an old lesion on my brain; MS lesions tend to come and go.  They based the diagnosis on the following:

1. My sister was diagnosed with MS in 1987.  Hers has always steadily getting worse.  At the time she was using a cane to walk.  MS can run in families.

2. In 1974 when I was in college I was getting a strange feeling in my fingers and toes which I thought was numbness.  My then girlfriend took me to the infirmary where they stuck pins in me to see if I could feel them.  Because I could they decided it wasn’t numbness and put my problem down to either resulting from fatigue or I was imagining it.

In 1989 they believed that my MS actually appeared in 1974 but it is a disease that doctors will sometimes watch for a few years before they make their diagnosis.  I later went for second and third opinions before I accepted it.

A year later I lost the use of both my hands and this is where Chuck came in.  It happened in the middle of a work day and I needed to get to my neurologist.  Since I couldn’t get there on my own I needed a ride.  Without hesitation Chuck volunteered to take me.  He didn’t know what the problem was; I had only told my boss about my condition.  On the way back from the doctor’s office I decided to let him in on my secret.; I felt he deserved as much.  He told me he had guessed that was the problem while he was in the waiting room.  Several weeks later my hands recovered but until then he was my chauffeur.

From then on he couldn’t do enough for me.  If he called and I happened to mention that I was on my way out to mow the lawn I would find him already doing it for me.  This was no simple thing; he would drive the 5 miles from his house after loading up his lawnmower.  Everything he has always done for me has been for free.  He would never accept gifts or cash for anything.

If you ask him today why he will do all of these things for me, he will tell you that it is because I got him a job.  The problem is that I did this in 1996 when he was out of work and needed to support his wife and kids.  But he has actually been going out of his way to help me since 1988.  I don’t push it; maybe he doesn’t consciously know the reason.

I am at times grateful for what he has done for me.  At other times I get irritated.  Unlike my sister who is now wheelchair bound my form of MS is all internal.  I get the “funny you don’t look sick” if I even mention that I have it.  It bothers me at times to have other people doing my work for me.

Whatever, Chuck has been a very good friend.  Missing his Mom’s wake was never an option.  It was 3 hours round trip to the funeral home but it was worth it.  He even seemed surprised to see me.  We hugged, his wife and I hugged, and she made me promise that our families would get together.  I said some prayers for his Mom and then headed home feeling good that I could give a little back to him for all that he has done for me.

Sunday was mom’s birthday.   I’m not gonna tell you how old she is; she’d kill me if I tried.   It started out a great day but we were afraid that it was going to rain later on.   We were hoping to get the party well on its way before that happened; it was held at my sister’s house.  My wife and Max left to make the 45 minute trip up into New Hampshire so that he could spend time with his cousins before everyone else showed up.

On weekends my mother goes to my other sister’s house to take care of her.  My sister and I both have multiple sclerosis.   Mine is the “funny you don’t look sick” kind.  My sister is bad and continues to get worse.   She is in a wheelchair and must have Personal Care Attendants or PCAs available to help her on a daily basis.  She cannot get out of bed, dress herself, bathe, or use the bathroom without help.  One of the things she loves the most is to be placed on her scooter so she can tool around town in good weather and see her friends.

She has several pcas that work with her during the week.  As I mentioned Mom takes care of her on weekends.   I am generally the “pca on call”.  This means that if she has doctor’s or chiropractor appointments I’m generally the one that helps her get there.   If she’s got a party to go to who’s she gonna call?

Today my job was to travel an hour south to pick up both my mom and my sister and then drive them in the reverse direction an hour and a half to the party.  I’m glad to do it; Sis was my best friend when we were kids.   I can still remember when she was in kindergarten coming home to spend time with her 3 year old brother who would be lonely waiting for her all day. Now we are in our 50s and I can now be there for her.

When I got to her place she and mom were in the bathroom getting ready to go.  Uh oh, she has a new wide screen HDTV; man I’d love to have that!  I sat down to play with it while I was waiting for them.  I didn’t get enough time with it; I was called to help get her onto her chair.

Getting her out of the bathroom is nice now that the state rebuilt the door so it is wide enough to get the wheelchair through.  There are other things they did too such as putting in a new tub, handrails all over the house, and for me something else.  When we were ready to go I pushed her out over the new small ramp onto the back deck and then down the new long ramp on the side of the house to the driveway.  It is so much nicer now than when I would have to position a chair in the house and one in the drive and then carry her up and down the stairs.

I’m also always learning the best ways to help her.  Every time I see her she has a new way to lift her out of the chair and put her into the car.  Today she directed me how to do it.  Like always I position the chair close to the car and then remove the foot rests.  The next step is to move in front of her and stand with my legs on each side of hers.  I then squat a little and reach around behind her to grab the belt she wears underneath her clothes.  On a count of 3 I stand straight up bringing her with me and hold her close.  I spin and lower her onto the car seat.

Now comes the tricky part.  When I set her down she always ends up lying down with her feet still on the driveway.  I have to slide my arm under her armpit and lift her to a seated position.  Today was a little easier because mom climbed into the driver’s side and helped lift her.  Once she was seated I swung her legs into the car and we positioned her so she was comfortable.  Then I put the seat belt on her and threw the wheelchair into the trunk.

Once we were on the road mom took a nap in the back seat and we chatted on about different things.   She and I are both website developers so we talked about things we were working on.  She has not yet seen my blog so we talked about that as well.  The point is that while we are driving we are family and friends having a good conversation.  She does not have to worry about all of her problems, which is a good thing!

When we got to our sister’s house there was a mad rush of kids because grandma and sis were here!   And after that it was time to reverse the procedure by putting her back on the chair and then getting her into the house.  This time my brother-in-law and I had to lift the chair over the steps and inside.  The final stop was out on the back deck.  She spent the afternoon watching the kids swimming in the pool or playing games like hide-n-seek and tag with me.  She loves relaxing and seeing all of this.

My duties were over for the day.   If she needed bathroom breaks our sister took care of it.  Everyone helps her; even the kids brought her hot dogs and burgers.  And I can’t forget mom; this is her day after all.   We sang and brought out the cake. My 8 year old boy gave her a birthday card and grandma laughed when she found a dollar in it, “to spend any way that she’d like.”

The party was still going strong when my wife, Max, and I left.  That seems to be always the case.  When he starts getting tired he can act out like all kids do but his disorders tend to make him worse.  We find it best when it reaches 7:30 at night to make a nice relaxed retreat before anything happens.

I didn’t forget my mother and sister.  My brother and his family had arrived after we did and he stepped up to take them home.  So mom was ecstatic, it was the best time she had had with her family in a long time especially since she hadn’t had to worry about my sister.  She does that enough anyway.  And my sister had a wonderful time.   She doesn’t get to see her nieces and nephews very often and she misses them and it is gratifying to her to find they miss her too.