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05/28/14

Permalink 12:43:00 pm, by eleanor Email , 134 words   English (US) latin1
Categories: Announcements, Advocacy, Thoughts

HAPPY WORLD MS DAY

World MS Day 2014

Today May 28 is World MS Day.  Today is a day for people with MS  to reflect on their life experiences and what they appreciate has gone so well and what they would wish could have gone so much better.

So today people with Multiple Sclerosis around the world are sending wishes from their heart what they wish could happen for every young adult who will live with MS the rest of their lives. 

My wish is that people with MS could live in an environment that is understanding and allows them to adapt to modify their environment. That way they too with MS limitations can use what they have to better their life conditions and have a happy long life.For more information on World MS Day and other people's wishes go to : http://worldmsday.msif.org/en#home

ellie

01/10/14

Permalink 03:27:00 pm, by eleanor Email , 294 words   English (US) latin1
Categories: my life, exacerbations, Thoughts

DEPRESSION AND MS AND DISABILITY

Gold mask of Agamemnon 

 

Inscribed on a marble column In Greece  dating from around 200 AD, is a haunting short song of four lines composed by Seikilos. The words of the song may be translated as:

While you're alive, shine:

never let your mood decline.

We've a brief span of life to spend:

Time necessitates an end.

It has been close to three months since I wrote my last blog.  In my last blog I mentioned how I had been doing so great and then went into an MS relapse Emotionally I just fell apart.  I've slowly been getting better and now I am really almost back to a level I was pre relapse.  I felt guilty that I was letting my relapse get me down especially at Holiday time.

IMG_20131225_162333 

Thanksgiving  and Christmas were here and I decided I just wanted to have a happy holiday season . So a blog was out as were a super house and Christmas cards. I couldn't even get energy up to think of putting up a Christmas tree. Oh, but when I said, "maybe" my son and  hubby brought home a winner which we all decorated.

IMG_20131229_175501

And then my son's put out the lights on our porch which shone thru the Pampas grass my husband had previously placed in our window boxes.

 

 

 

 

IMG_20131229_175534

Hubby and I went out to a craft store to buy a ribbon so I could to make a bow for the wreath he had made with pampas grass.

They say that people's natural happiness is 50% intrinsic and the rest is situational. But the strongest element for happiness is close ties with people who love you and who you love, no matter what !

Did we all have a Happy Christmas. How could we not have!!

Hope yours was happy too!

ellie

11/16/13

Permalink 10:54:00 am, by eleanor Email , 1097 words   English (US) latin1
Categories: my life, exacerbations, Thoughts, Adapting Activities, information

REBALANCING MY LIFE AS I AGE WITH MS

 

" People are always blaming their circumstances for what they are. I don't believe in circumstances.The people who get on in this world are the people who get up and look for the circumstances they want and if they can't find them, make them."

George Bernard Shaw

Balance has always been a problem in my life. Based mostly by having multiple sclerosis in the relapsing-remitting form for years before I had a definite diagnosis. In those early years I was afraid something might be wrong and sometimes I had doctors tell what I wanted to hear "that nothing was seriously wrong".

When I was finally diagnosed the neurologist was amazed that I was able to adapt and just ignore my symptoms for so long . But when the diagnosis was finally made it made sense to me and it was a relief.  Remembering those times with the feverless flu's dragging myself around clumsily and becoming so incompetent.  I also was constantly beating myself up for being so lazy. Then I would become myself again full of energy taking on too much feeling I'd just been lazy, unorganized and undisciplined. And I would vow that I'd  never let that happen again. 

So I looked for sources of inspiration to solve this problem of mine. I read many books searching for counsel. There is one great book that I still have on my book shelves that I kept returning to.

The book is "Balance" by Joel and Michelle Levy.

Why Balance? For a chronic problem of ups and downs I felt the need to center myself. And for many decades after my diagnosis I still have felt the need to go back and re-center myself. Why the continuing need to re-center? It's because the fundamental nature of my body with MS means relapses and remissions and over time a gradual steady loss of functional ability. And change requires adapting to my new body limits.

Some of these changes were positive when advances in MS care came into my life. When the drugs like Betaseron for MS first came on the market there was increased hope for a better life. And when I started taking it I did have shorter relapses. But fatigue continued so I was put on Provigel to help. And it did help some of the fatigue. But after many years on  Betaseron it became much less effective and I started spending much more time in a wheelchair.

I changed  my Neurologist and he changed me to Rebif (a Beta 1A )  and soon added monthly low dose Methelpredizone IV. The improvement was amazing. !! This caused a great change in my life.

In fact this was the best 3 years I had had for a long time!! I started my garden and other projects and I went out more. I went back to my walker, cane or crutch. My wheelchair was for long walking excursions only.  But gradually after a few years it became less effective and a decision was made as I was also a Type 2 diabetic (methlpredisone can increase blood sugar levels)  and I wasn't getting the amount of response from it that warranted risking any increase in my blood sugar levels.  This had a very negative effect on my function. My walking etc. decreased dramatically.

But around this time the drug Ampyra (a potassium channel blocker) which increases walking ability by allowing the electric current to flow better over damaged myelin sheaths covering the nerves was put on the market. I was put on this drug and my walking ability increased again . It was not the same as when I was on methlprednisone however I was able to walk a longer distance with it then without it.. This is a very meaningful event for a person with MS who has a much lower functional level.

My son's had over the years made many adaptations to our home to allow me to be as safely independent as possible. So when I was in a bad time I could still do some things I wanted.

They widened  the doorways to allow me to push my wheelchair thru easily, moved my bedroom downstairs and added a downstairs fuller bath with a hand held shower,seat and safety bars. And of course ramps to go outside and raised beds to garden in.  I also had purchased an electric wheel chair to be independent when I was out and about or when my walking ability was down.

Right now I am only on two MS drugs, Ampyra and Rebif (Provigil is no longer covered by my insurance and it's too expensive). My walking and functional level is down but it's been consistent, which makes it manageable.

I know how far I can usually walk and can manage my energy level quite a bit by resting ahead of events and by taking naps. This gave me confidence to plan ahead to do things I wanted to do.

In September I took a week trip with my husband to visit my sister and her family in Virginia. A few weeks later I had a nice visit with my niece and her newborn son. Then in the beginning of October a couple we had been friends with for years came for a wonderful visit.

I was becoming so social! I was able to go out to two charity events and felt secure on my managing this MS fatigue etc. I made plans to have my nephew and niece come to visit for a day.  Oh I was feeling so in control !!

Then I collapsed. My Fall annual relapse did come after all. And per usual as I start to get better it's 2 steps back one step forward. I'm tired of these relapses.

I'm starting to wish I had straight secondary progressive with no relapses because I don't end up ahead anyway when I remit. I have no control over that just as I have no control on how well I remyelinate (heal) after an attack.  But I do have control on how I handle all this!

This is why at this time re-centering is needed and why I have re-opened my book on balance. Going thru it and following their advice and thinking has always helped me thru  bad change. As my journey thru life aging beyond my current 78 with MS continues I want to be in control. I want any changes that I need to be based on my priorities of what's important to me !

Below is a link to a very good artivle on understanding MS.

Understanding MS with it's unseen symptoms better

ellie

08/10/13

Permalink 01:40:00 pm, by eleanor Email , 675 words   English (US) latin1
Categories: my life, Thoughts

MS AND DISABILITY WITH HEAT AND HUMIDITY

EEEK WHAT A BUMMER!!!!!!

 

Living here in upstate N.Y. has always been manageable for me. As I love to be outdoors and garden (see my previous many blogs on the subject) having a nervous system that's already slow due to MS get hit with heat I have had to adapt. And adapt I have.

I use ice packs under my hat, around my neck chest and wrists as needed. Then there are fan's, sprays, cool drinks and just plain hose on myself. I also have two major shady retreats; the front porch and the deck out back under the canopy. At one time we had shade from our neighbors old majestic pine trees. But alas they cut down all the lower branches so we substituted with the canopy. It's not as effective but it works. Then equally important would be more of the little shady rest spots thru our property that I garden in that I used to have. We usually have 10 -13  90 deg. days during the summer but not lasting more than a day or 2 at a time. Not this year we just are coming off a 6 day heat wave of 90 ++ temps. With horrendous humidity in the 70.s. And we went from a dry spring to monsoon like summer rains which kept the humidity up. It's the humidity that's the killer with the heat. No wonder more people die in a heat wave than a hurricane, tornado or earthquake. And the people around me are feeling maybe a bit like I am normally as the heat slows down their neuron conductivity a bit! I even had a person relate to me this feeling with empathy? I thought maybe it would bring a new realization of what it's like to be SLOW ME. Walking so slow..thinking so slow..doing everything so slow..what a drag !! 

Well the heat wave has passed and the torrential rains too! Life is much better for me. I'm not getting stuck to the ground when I'm out, can walk further, think better and not exhausted even when I'm in air-conditioning. And the people around me are back to normal!  I hope their experience will show new empathy .

As I who was once so zippy just keep getting slower and slower but I can relate to how I once felt when people tell me of their hiking,biking tennis events. How nice it would be if the remembrance of that itty bity slow down they had brought a realization and understanding of how I must feel. And that they realize I want to do so much  but it requires more time, rest periods, and sometimes a little help. And sometimes a big help and then sometimes no can do..sorry!!!

I must sound like I'm just griping up a storm. But I know I'm not alone in feeling this way. I read other blogs of people with MS and as I also was a physical therapist I heard this from my MS patients as well as those with other disabilities. A common problem was that that people didn't understand they were doing the best that they could. When people with friends or relatives with MS feel slowed down from the heat it's a perfect opportunity take a leap into their friends life. And then recognize that it's their nervous system being slowed they can get a glimpse of what is normal everyday for someone with MS. And then in heat and humidity how they must really can lose function!!

In fact back in the 1800's a dunk in a hot tub was a way of determining if the patient had MS as it brought up the symptoms which was at that time a confirmation of MS. Well, the humidity and heat are back. The heat not so bad but it's the humidity that's got me from walking to a few limps only and brain dead today! I can manage the heat much better than the humidity.

Back in my home with air conditioning. Thank God for Air-conditioning!! And knowing that Fall is on the way!!

ellie

 

07/06/13

Permalink 03:53:00 pm, by eleanor Email , 814 words   English (US) latin1
Categories: my life, Thoughts, Adapting Activities, Gardening

WHY I GARDEN

 

"If you work with your hands,
you're a laborer.
If you work with your hands
and your mind,
you're a craftsman.
If you work with your hands
and your mind and your heart,
you're an artist."
-Saint Francis of Assisi

July backyard-14

 

If I take this quote from Saint Francis of Assisi and compare it to how I feel about my gardening  I am not just a laborer or craftsman I am an artist.  Because I truly love to garden and my heart is full because of it.  Now there are times I do feel like it's labor and use knowledge and tools to be skilled in what I do like a craft person would. But the love I have of it must make me an artiste of gardening. 

At one time when I was younger before Multiple Sclerosis started affecting my physical body and cognition etc. I suppose I could consider that I was an artiste of running, jogging and then walking because I  loved to do these activities and felt so wonderful when I did them.  I also could also say I probably was an artiste in my swimming . As a past instructor I knew my strokes but the movement of my body thru the water was what I loved whether it was in the ocean, lake or a pool. Again I can say It was the same for for hiking, biking and playing tennis as they all gave me such  pleasure and everything just felt right.

But then all these physical activities became nothing more than labor. Even though I tried to use my knowledge of the sports and as a physical therapist of the body to try to compensate for what I did it eventually became joyless labor. So over the years I was forced to give up running then jogging then walking any distance. Also hiking, biking and finally swimming as one lap in a pool didn't cut it with me. I also had earlier given up tennis which I loved too. But then there was gardening.

When I was busy working and with the other things in my life gardening had taken a back seat. Because heat limits my ability to move etc. gardening after work was not a possibility. And to  garden before I went to work would limit what I could do at work due to fatigue. So my husband filled part of my void and I enjoyed what he did and my own limited work on weekends.

But after I retired and MS relapses slowed down a bit and I became more comfortable with my limitations I was quite ready to really adapt and try to push the boundaries of what I could do. Also the fact that my son's were around and able to put in ramps,raised beds and were there when I need that strong body made it possible.

July backyard-1 

I get up each morning in the spring  and summer and look out the back door and front door to see my gardens which I love. In the spring when my bulbs are starting to come up requires an assessment daily as well as mulching and weeding. Then the 2 apple trees bloom and the Japanese maple comes to life. Then it's lilacs, peonies and roses that are filling my gardens out back as well as the blooms in my home. And quietly out front and down the sides Hostas, Coral bells and all my bushes and ground covers are start to push through the soil and bud and bloom, thriving and making my world better. My son's vegetable garden is now thriving as well as my raised salad bed.

And yet there is so much more to come!! Hydrangeas and Day lilies will meet with the Irises,and Corn flowers Gaillardias and Hollyhocks. Oh and so so much more! Oh yes there's the birds that come to the birdbath under the Japanese Maple tree and then the butterflies arrive en masse when the butterfly bush blooms.

And to make it all work in the morning before it gets too hot between my tending my garden I have a nice shady area with a chaise to take a break and watch, meditate and read and cool down. There are other areas with shade and a chair throughout my garden's too. And our wraparound porch with window boxes filled with flowers and hanging plants caps it all off at the end of the day.!!

I get my Vitamin D, good wt. bearing aerobic exercise and flexibility and balance exercises. And definitely a little muscle strengthening too. And I'm learning all new information about plants and gardening. Actually getting better computer skills as I keep  charts and I've gone back to photography too. How could I not take pictures of my garden flowers.   And thanks to my son's fresh vegetables in my diet.

Rose bower-10

What more could I ask for ?

ellie

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Rules

Ellie’s Rules for Coping Well with MS and Disability
Get Knowledge
Admit What's Happening
Set a Functional Goal
Adapt Lifestyle
Attitude is Everything
Be an Advocate
Live Life to the Fullest
Laugh Often
Then All You Need is Love
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