MS

This is a question that I am I asking myself lately . We live on a tree lined street in Saratoga Springs . Most of the homes were built in the late eighteen hundreds to early nineteen hundreds. All of these homes have front porches .These big beautiful trees look great when you drive or bike down the street or walk down the sidewalks .They also provide cooling shade not only for us for porch sitters but for those bikers in the streets and walkers on the sidewalks. Having MS I need shade but I also need interaction with people . This is why maintaining shade on my front porch, the street and sidewalk is so  critical not just for the shade but also the interaction with the people going back and forth past my home.

When we moved here 30 plus years ago the trees were mostly older . Except the trees in front of our house.  We built full span window boxes on the railings of our wraparound porch. In them we were able to grow geraniums, petunias and Swedish ivy. And we also had sun loving plants in pots on the front and side porch steps .

Over the years the trees in front of our houses have grown up spreading their branches ving us more and more shade.This was fortunate for me having MS.  Unfortunately the older trees across the street were dying . Sadly one by one these big beautiful trees had to be cut down. It changed our view dramatically looking across the street while sitting on our front porch. But we were fortunate in that the house's across the street had big beautiful trees and shrubbery around them .   

I expected that when we lost those big beautiful maple trees we would also have lost shade on our front porch . But in fact the shade increased. We gradually had to replace our sun loving plants with shade plants.  And even though we have German Ivy and hanging begonias flourishing the plants in our window boxes were not. But my biggest concern in the front was a branch from one of the tree's that was hanging so low you almost had to duck to go by it.

So last week when I was awoken by the sound of trucks and chainsaws in front of the house I pulled myself up out of bed and threw on some clothes. I grabbed a container of coffee put it in my cup holder on my electric wheelchair and sped out to my front porch to check it out .The City was taking down a very big beautiful sugar maple tree two houses up. They had removed several dead branches but sadly the tree was past saving.  Before they left I asked one of the city workers if they could trim the branch that was so low at the side of our house.  As the big truck that had the equipment with the bucket to trim the tree had already left he said he'd try to get them to come back another day .

The next day I was out back on our deck when I heard a commotion of trucks out front . Looking around the side of the house I realized it was the city's trucks.  They had come back!   In my Electric wheelchair I sped down my back ramp and around the block to the front of my house. There was the city worker that I had spoken to. He said "I said I'd be back and here we are ". I was asked if I was sure I wanted the branch off as I would lose some shade. Knowing that I had a lot of shade at the other end where I sat and on the side  I had no hesitation and said yes!  But I watched them apprehensively cut higher then I thought they would and the branch come down! They then asked me if I would like them to continue trimming the tree and the other two trees in front of our houses as the branches were pressing on our porch roofs.  I said yes please and so he continued and then dropped two dead branches from the tree.  That really upset me and  I told them" I do not want to lose my trees." They reassured me that the trees were healthy!!

 
When they finished I thanked them and was very please with how they had done it .  That afternoon I went back back out to the porch .  And the area where they had trimmed the branch looked so barren.... I thought ,"oh what have I done ?"  The big tree they were taking down was already opening up the space at the side of our front porch door. My family and my next door neighbor reassured me that I did the right thing.  But it did remind me how much shady trees provide cooling.  And having MS heat is my enemy .  As everyone with MS knows.

There are all kinds of cooling devices like vests, hats, scarves,bracelets etc. Some are fancier but others are simple like gel crystals In the band of hats . I've used them and they work but they don't continue cooling for long.

That started me thinking about some of my old patients who had no trees around their house's. They hardly ever went outside in the summer. I talked to them about cooling devices and going out early in the day which I do but I never told them to plant a tree or a bush or vines. Of course some of my patients did not live in their own home but even so.

  I've always lived with shade tree's and bush's giving me shady areas. In fact right now out back things are really over grown. And I've started thinking about making changes. The biggest change  will be in the fall when we will have our large old butternut tree taken down .The tree is dying and has quite a few dead limbs on it. And there's a tree that we had cut down years ago that grew back in our neighbor's yard with large branches leaning on the fence shading our backyard.

To prepare for planning all this in the backyard  and where the shade will be I've been checking the internet. I found an interesting site.        http://www.epa.gov/hiri/strategies/vegetation.html     If you're planning ahead for shade down the road or need to reassess your outdoor activities and shade it's worth looking at  even though It's focus is on the environment and saving heating and cooling costs . Of course that's a good thing too!    

Meanwhile back to my front porch... my window boxes are doing better . And I put up a large sun loving petunia hanging basket on that barren side of the porch where the branch was cut off ...  It looks great!  Even though I have to water it and dead head it daily. That's my arm exercises of the day .  (Actually my family helps too) 

Any suggestions or experiences of your own to share please do !        

ellie         

When I woke up this morning I felt confused. Somehow there seemed to be something I should have remembered or known. I think I had a dream last night. But there was my husband wishing me Happy Birthday with boxes of goodies.

After a few sips of my coffee I started to open the packages. My presents were lovely and thoughtful. But, I was really down, tired and depressed like I was when I went to bed last night.

So after a few morning exercises I went into my bathroom to take my shower. As I was brushing my teeth I looked up to my shelves and there was my green glass fairy perched haughtily on the shelf. Suddenly the dream that I had last night came back to me.

I dreamt that I woke up and there was that fairy sitting on a box on my bed. She wished me a happy 73rd birthday. Stunned I asked her what was in the box? She smiled and said: “Guess.”

This must be a dream, I remembered thinking, so I might as well go for it! “A magic drug to cure me of MS?”

“And what would you be doing with this new body at 73?” She sarcastically replied.

“Oh, that’s easy I’d be playing tennis with my husband, biking, climbing mountains again, and going out visiting people and places everywhere every day.”

She smiled again and responded, “I’m afraid not because that would not be possible.”

“Then should I just guess again?” I replied.

“If you want you can or you can just open it.” she said.

I thought for a while then I responded, “Maybe it has a magic potion to take away my wrinkles, and pump up my lips a bit … actually a whole facial uplift. And while we’re at it how about a little trimming of my increased waistline and putting the extra fat on my bum!”

Again she replied, “I can’t do that either.”

Frustrated I said, “Then why are you bringing me this box?”

“Maybe it’s time to just open the box,” she said.

“Okay,” I replied with a big sigh.

Bringing the box closer to myself I lifted it and tried to shake it like I’ve always done with presents. It kept getting heavier and heavier and I had to drop it. Now, I really didn’t want to open the box! I wanted to wake up from this dream that was getting scary. But the fairy and the box were still there.

Then, very sweetly, the fairy said, “I know you’re frightened, so I’ll tell you what’s in the box. This is your box of sorrows.”

Puzzled I asked her, “Why are you bringing me a box of my sorrows?”

She replied, “Because I could feel your unhappiness with your body and all on your birthday. And you have been so good at filling this box. Sometimes it took time but you always did put your sorrows behind you into this box eventually. That has helped to make you strong.”

Now I wanted and needed to look into the box. And there were all the unhappy moments and disappointments in my life, including the deaths of my parents and two of my brothers and my sister. And I could remember the feelings I had at the time. So I looked up at the fairy quizzically and asked, “Why, why are you showing me this?”

“It’s to help you put things into perspective to help you move on.” Then I woke up.

I didn’t remember my dream until I saw my green fairy on the shelf in the bathroom. I guess I’ll always remember the message that she was trying to send to me. I just need to go into my bathroom and look up.  

                                                                                                                      ellie         

My husband Bill and I have been waiting for the good weather of spring to finally come. We had a teaser for a week in April but then the temperature really dropped. However, on this Memorial Day weekend the weather was perfect. It was finally time to go to our local Garden store Dehns right here in town. I’ve always tried to go with Bill at least for the initial planning and buying session. And for the last two years I have been right there picking up and taking out the flowers and veggies that we decided to use. .

Before I got my electric wheelchair going there was a bit tricky. The paths like all nurseries have gravel and areas that can be muddy. When I would use my manual wheelchair I could get stuck and have to be pushed a fair amount of the time. And then…. oh I don’t want to go into my walker or cane problems. Also, of course there were times it was MS (my constant companion) that interfered with my going or good participation.

This year we both went. We loaded up my wheelchair into the van by way of a great wheelchair lift and took off for the first pick of flowers of the season. It was such a beautiful day everyone else had the same idea too. Therefore it was a bit crowded but we knew we would be back another day for more flowers and veggies. It takes time to get everything planted anyway!

We always start with the window boxes that wrap around our front porch. When we first moved here 30+ years ago we planted Petunias and other sun loving plants. But now the trees have grown and our front porch lives in shade. It does limit our selection of flowers. But of course with MS the shade is great for me. We always start with replanting the German Ivy that cascades over the boxes both on the street and the porch side. It grows so abundantly that we always have some left over which we bring inside with our other indoor plants. Then we add in the shade plants we select. This year it was salvia and nicotinia. We also selected two beautiful hanging begonia plants.

To be honest Bill does most all of the planting. I do a little or a lot. It depends on my energy level and strength which seems to be regulated by my MS. It doesn’t matter because that’s the way it is. If I push too much and I get exhausted Bill gets were really really annoyed. Actually I try to do Zen Gardening, a little every day being fully immersed with all my senses as well as the physical part of it. That way how much I do on one day doesn’t matter!
So we held off on planting the begonia’s in front of the evergreen bushes below the window boxes on the porch. But the next day when we did the planting it gave me an opportunity to try out two new long handle tools (a rake and a shovel) that Bill picked up from a local store Allerdice for me.

They actually extend so you can use them in two lengths. And they have an easy locking system that holds them in place. I think it really did help my back. When I spend time standing or leaning forward from my wheelchair and working with my arms my back can really ache later. I have found that it has been easy to end up with a sore back for several days. It’s just not worth it! “an ounce of prevention!”

So I use Zen gardening, the right equipment and try just being sensible. Then I can just enjoy and feel good about what I’ve accomplished. And look forward to doing more the next day. ellie

Well here it is almost the end of May and I never did write a new blog entry! This month went so fast. To be honest, I’ve been in an MS relapse with very little energy. In addition my two wonderful sons’ were doing a major renovation of our living room. A lot of sheet rock, electrical work, building a wraparound great bookcase with a hidden door in the middle of it. The door goes to a small closet at the back of our living room.

My son said it would take about two weeks. I knew it would be longer and of course it was! It was at least 6 weeks of upheaval. Naturally all the furniture had to come out. But luckily we could use our front parlor to live in. We also used our front porch for storage. I don’t think the neighbors were crazy about our front porch storage! But oh it was worth it!!!!.

They wouldn’t let me paint even a little they felt I would be just in the way. But if course I did chose the paint scheme. The walls were painted a Mediterranean terra cotta. The woodwork including the doors were painted white. The doors had already been refitted with offset hinges to open wider for my wheelchair. The doors included the door to the bedroom ( the former den )which also had been redone with shelving in place of a bureau to make it easier for me and my wheelchair. The doors to the dining room and to the front porch also had been modified with offset hinges. The pocket doors to the front parlor needed no modification.

The book case which wrapped around the back of the room was in a soft light grey. My son’s installed track lighting on the ceiling in that area so the books of which we have 1500 or more can all be seen and located at the drop of the switch. And as they’re on a dimmer when I put them on very low it just makes for a nice ambiance.

As we have an old house 1860 or so in the east side of Saratoga our neighbor’s houses are very close and privacy is needed. Therefore I chose café curtain with a swag in unbleached cotton with lovely battenkill lace edging. They are just perfect! I had been looking at these for some time. It gives our room a real Victorian feeling.

So here I am going on about My living room. But even though I am 72 going on 73 and have progressive MS and am wheelchair dependent doesn’t mean I don’t need to refurbish and change things. And I luckily have the help to do it. I now have a living room that fits my needs in my wheelchair etc., and it is beautiful too! This is a room that I could never be unhappy in.

I have not forgotten about the curb cuts in downtown Saratoga. I will get to that at least by the end of June. Also now that the good weather is here planting flowers and vegetables is now on my agenda. I hope to share some of that too! Now that I’m in it an MS remission it’s time to take advantage of it and get some things done!

I can’t believe I’m actually writing a blog! This is fun it’s nice to share! I hope you enjoy reading my rambling and get something out of reading it and respond to what you like and don’t like. I’d love to hear from you! Ellie

This week (March 10-17) is Multiple Sclerosis week. Multiple Sclerosis (MS) is an auto immune disease that affects the central nervous system (the brain and spinal cord). 10,400 young adults ages 20 to 50 will be diagnosed this year. They will join the 400,000 adults with multiple sclerosis. I am a retired Physical Therapist with MS. I have worked with many of these young people with MS. I would like more people to understand how MS affects them and their families.

So what is happening to these young adults? Simply put the white cells in the person’s body mistake the myelin sheath covering the nerves for a foreign body and start attacking it. This attack is called a re-lapse. It may be a severe attack or a milder form. In either case the person’s body will repair the damage and they will recover. When the body has recovered this is called being in remission. This pattern may continue for years and years taking in multiple new areas and the body keeps trying to repair itself. Eventually the body will stop healing itself. At this time there will be a gradual loss of function in all the multiple areas that the nerves involved were sending that energy to.

Because MS is the number one disabler of young adults it makes this disease particularly troublesome. These are the ages when we are most productive. People are starting out on their careers, marriages, raising families etc. We all know of the energy required in all this. A person with MS just does not have the normal consistent reserves of energy of other young adults. Remember what is happening in their body!! Long before an overt form of any disability becomes apparent, MS is starting to erode away the quality of life of the person and the family of the person with MS.

Because MS is a very complex and eclectic disease it can be hard to relate to a person with MS. A person with MS has good days and bad days due to the nature of the disease. You may know a person who has visual problems and another person who has a problem walking. Some of you may know people who have balance or coordination problems. Others of you may know people with cognitive or speech problems. But remember the term multiple. Your friends may have some of these other problems too, because MS attacks the nerves in multiple areas of the brain and spinal cord. Where, when or how severe the attack and how much repair will be done is unique in every person. Therefore the accumulation of disability will vary also.

But the one symptom that all MS patients have is fatigue. This happens to the newly diagnosed (in fact it’s one of the early symptoms) and to the wheelchair user alike. This fatigue is unique to MS. It can be a debilitating fatigue of utter exhaustion coming out of the blue for no reason at all. And it can cause an increase in the symptoms of all the other damaged areas in their central nervous system. Like losses in vision, motor skills, coordination, cognition, speech, swallowing, etc.

Fatigue itself causes many people, myself included, to stop planning ahead or making commitments to events. Because you never know!

If you know of someone who has MS, and you want to be-friend them or to try to understand them better, please do. They are part of your community.