Living Well With MS & Disabilities: Ellie's Blog

Last week my husband and I decided to go to a couple of new garden centers.  We have several close to us that we have used for a lot of our gardening needs.  But it's fun to go to a new place as they usually have some different flowers or other garden paraphernalia.  I guess we've been spoiled because the local garden centers have the paths that are easy for me to use in my wheelchair.

As heat is a problem for people like me with MS we started early before it heated up. The first garden center we went to was recommended by a friend who works there part time.  Pulling in we realized it was heavily graveled with large stones. We looked at each other knowing this could be a potential mobility problem for me.  But as we are not people who give up without  effort we took out my electric wheelchair and yes the large stone gravel was limiting.

However, the people there were very nice and brought me a chair to sit on as I had to use my cane to get around where the electric wheelchair couldn't go. As my walking distance is quite limited there were many areas that I could not get to. But we did find several plants we wanted and bought them. By the time we were finished I was beat but we still had one other place we had planned to go to. So I rested while my husband drove us there.

The second place was also all covered with gravel. Knowing I would be limited in my electric wheelchair I figured I'd try using my large wheel wheeled walker with the seat. I knew my husband or I could lift it if I got stuck and I could sit when I needed to immediately on the spot. It was easier to get around and I tried to find shady spots between my short distances that I could walk. However it was later in the morning and hotter and suddenly I could no longer walk.  So after resting I found I could take a few steps and added my sideways- backwards walk which brought me further. Normally my next step would be to sit on the seat of my walker and push myself backward. But due to the gravel that was a no go. However with my husbands help and time we made it back to the cashier with our purchases and then to the van.

As we left I looked back with longing as I did with the former garden center. Longing for the sites with flowers, bushes and trees that I could not get to. But I checked out what we had purchased with great satisfaction. They were plants that should fill spots that needed them perfectly.

But as I was planting them with my husband's help in some cases I felt such a sense of sadness. There were some areas I wanted to put some more perennials in. And I have to admit I was really tired and angry when I thought of all that impossible gravel impeding my shopping adventure for my garden.

And as I continued to ruminate on that awful gravel I pictured myself going places where they had gravel in the following wheelchair.

                                                      This is called the TANKCHAIR. This chair was created and built by Brad Soden for his wife who broke her back in an accident. Confined to a wheelchair her life was changed dramatically. She and her husband and their 5 children loved to camp. An incident on a camping trip compelled her husband to create a chair for her. For more information on the TANKCHAIR and why and how it was built go to  http://www.tankchair.com/ 

In this crazy wheelchair gravel would never be a problem for me. I could also go hiking on trails that are inaccessible to me now and just ride across open fields or along the beach. I wonder if I could even climb up sand dunes, hill's or even mountains ?  

My electric wheelchair is meant for going over floors, sidewalks, grass or very fine gravel.  There are standard electric wheelchairs or scooters with larger wheels that could go over larger gravel and some limited open terrain but they are expensive and not in my budget.

But this wheelchair is the max. It's certainly not in my budget. But what a wheelchair !!

                                                                               Look at that expression of utter joy on Pam Soden's face.

What a husband!

What full fun day's of camping this young family will have!

After having fun picturing myself in this TANKCHAIR  going all kinds of places unhindered suddenly my anger at the gravel diminished.           

I glanced over to the chaise area (my special shady nook) on my deck to the plants I had just added there .                                                     The realization that I had almost forgotten the pleasure that I felt from what I did see and had purchased hit me. There's nothing wrong with wanting things to be better. But again the important lesson of appreciating and getting pleasure from what can be can never be forgotten. 

To find current information of new ideas to increase mobility by adapting your wheelchair or a innovative new products go to the Wheelchair Diffusion Blog  http://www.usatechguide.org/blog/category/wheelchair-weird/

Live well and don't obsess on what you can't do.

                                               ellie

A few weeks ago I was doing so well. I was making all these plans and then "bam" down again- plans cancelled. But after my monthly sol-u-med this month I was back up making plans again.

What a crazy life! No wonder people look at me perplexed sometimes. I can be dragging myself around too tired to think then suddenly I'm better. I'm not a person you make plans with easily.

Today I celebrate my 75th Birthday. And the idea that I have been here for 3/4 of a century just blows my mind. Also the fact that for more than half of this time I have been living with MS, a disease that afflicts my CNS.

Yet,especially at the beginning of the disease I had not always felt ill. There's no doubt there is an importance difference  between an illness and a disease. Organs have diseases, people have illnesses.  Physicians diagnose disease, patient's suffer illnesses.

Illness is the way a disease complicates the life of the person who has it. Its seriousness depends upon the impairments it causes and how long it lasts.  MS is a chronic disease and it can over time also become a chronic illness that can really complicate your life.

Somewhere along the time line of living with MS most people have that gut wrenching moment that this is chronic and there is no cure in sight. I can remember when fatigue and walking any short distance was becoming a real problem. I felt scared and bewildered. "How could this could be happening to me? "

I had a least a week when I couldn't stop crying and asking why,why me? Since then I have found out that most of us who are successfully living with MS have usually had that moment. The moment when the intellectual awareness that MS is a chronic disease becomes a gut realization that it's not going to go away and you know you have to learn to live with it.

This is when we stop waiting for the cure and reorganize our lives to live within new parameters to manage our illness due to our disease of MS. This is not a negative time.This is a time when we retake charge of our life.

Indeed this is when I started to learn how to live on the MS See-Saw.  I found that to handle fatigue I had to handle my time well and organization was key. I promised myself that I would no longer waste time and energy looking for things or starting too many projects at once. And if I took up some new activity that would take time I had to give up something already on my docket. Everything had to have its time and place .

As problems with cognitive processing (mostly memory retrieval)annoyed me to no end I started using lists and other aids and I am still continuing to find ways to help myself with that. 

I also decided that I was no longer going to be the person who told my neurologist "I would never ever need to use a wheelchair" when he recommended I use one for longer distances. Indeed over the years I have welcomed the decrease fatigue and bodily discomfort with the use of the appropriate assistive device when I needed it cane,walker,wheelchair etc.

And along my timeline I adapted my environment with ramps,wider doors,shower seats etc.as I needed them. And doing so became natural and appropriate.

I also began to truly appreciate the value of rest.  The afternoon nap, resting before events, and planning ahead for a large event absolutely had to include rest before and after.

Lastly but importantly I have found pacing myself with the activities I do throughout the day has enabled me to live a much fuller life.

This doesn't mean that I haven't "fallen off the wagon" so to speak as I'm only human.  But it really hasn't worked to push myself or deny reality so I always come back home to respecting my limitations.

One other factor that's been very helpful in my managing the MS See-Saw and live well has been the advance of science.  The value of the knowledge gained about MS through research and the advent of pharmaceuticals to help us manage our illness better cannot be understated. It seems that it all started with the development of the first interferon drug  Betaseron  to reduce the severity and the amount of MS relapse's and hopefully disability.

I used Betaseron and it was helpful for years then as it became less effective I was switched to Rebif and had a pronounced turn for the better.  I also have had other drugs that have been helpful. For fatigue Provigil, for pain Pamelor then I was switched to Cymbalta which was even more helpful.

Right now my monthly infusions of sol-u-med are also helping.  And I'm looking forward to being able to use Ampra to help with my walking.  But even if it's embarrassing I can't forget my bladder. With the use of Oxybuytnin I don't have to worry about wetting my pants and intermittent catheterization has saved me from repeated bladder infections.

As I now enter the last ¼ of my century I feel very positive.  There is no doubt that knowing that the research in MS is continuing and that new medications are on the horizon is encouraging.  And If getting better is not in the cards for me I do hope and pray that I keep most of what I have now physically and mentally.

I think what's most important remains a loving, supportive family and friends who understand and are willing to pitch in and help when you need it. And of course have things you have yet to do, places you have yet to visit, folks you have yet to meet, books I've yet to read etc..

My message for those younger people starting to live with MS and those who feel like your now on the MS See-Saw remember you still can have a good life. It may not be what you thought it would be but you can make it a good life. A life well worth living maybe for a whole century.

                            Live your life well         ellie

Last year my sons put in a raised salad bed.  And then I asked them to write up a detailed description with picture's here on my blog so I could share it as it was just so great.  It can be found on my blog  of 7/29/2009 "How to Make A Raised Salad Bed".

last summer I was able to able to plant, grow and then pick my salad greens most days by myself.  It was so successful that we did not buy one salad green till October. And at the end of the summer we composted the bed to put it to sleep for the winter.

Over the winter we just watched to make sure the snow was not piling up too high on the top of the bed. Periodically we just cleared off the top of it a bit.

This spring (which came early this year) we assessed its condition and it was good.  However my sons decided they didn't want to risk any chance on long-term unsteadiness as it was a keeper. 

So they raised each end, poured in cement for it to rest on to give it utmost security.

Then they prepared the bed for planting our salad greens this year.

This is the fantastic result. 24 different wonderful greens in a patchwork quilt pattern ready to eat in Mid-May. Who needs flowers for beauty! (Oh we have flowers too.) And now with the new ramp they built for me to go down off the bridge "I'm independent no matter how my legs are every day.           Bon Appetite         ellie

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More than 1,500 athletes and coaches from across the state will attend the games of the Special Olympics in Utica this year.

The games begin on Friday June 4 with the final leg of the statewide torch run through downtown Utica. The opening ceremony will be in in the evening at Utica College.

On Saturday June 5 competitions will include aquatics, basketball, bowling, power lifting, gymnastics, tennis, volleyball, and track and field.  These games are open to the public and they are free.

It will be the special day.  If you have never attended a special Olympics event and you are free and in the area- go don't miss it.

For more information and directions to get to Utica and the Special Olympics go to: http://nyso.org/

                                    ellie

Today 65 countries across the globe are celebrating the second World MS day.  The Multiple Sclerosis International Federation (MSIF) and it's MS society's established last year that the last Wednesday of May every year would be World MS day.

The reason for this is to increase the awareness worldwide of the number one disabler of young people MS. As the average age of which MS is diagnosed is 29 the economic impact of this disease is great.  Total cost varies widely across countries but are substantial in all countries.  The average annual cost per person with MS in 2OO7 was $41,334.  Over a lifetime in high income countries like ours the U.S would be $1.2 million per person. Loss of employment or early retirement is considered the single largest cost factor contributing to this financial cost.  To read more and the Summary report of the Global Economic Impact of MS go to:

http://www.msif.org/en/get_involved/world_ms_day_2010/economic_impact.html

  And for more information on employment and the results of the latest survey click on the link below:   http://www.msif.org/en/get_involved/world_ms_day_2010/survey_results.html

To understand the in-depth commitment and goals of the MSIF and the MS society's a reading of the "Principles to Promote the Quality of Life of People with Multiple Sclerosis" would be a beginning.  This document starts with the Forward by J K Rowling the author of the Harry Potter books. In the Forward she explains her mother's difficulties with MS and the effect that it had on the family.                                                                      Her quote,"Quality of life is something we must all fight for in every country around the world, and to fight we need tools that are appropriate to battle ahead."To read the document go to the link below:

http://www.msif.org/en/resources/msif_resources/msif_publications/quality_of_life_principles/principles_to_promote_the_quality_of_life/index.html

This indeed is what is being promoted by the MSIF and its MS Societies around the world.  In the United States the MS society has worked hard to encourage Congress to have an MS Caucus in both the House of Representatives and Senate.  These caucus's are where our legislators can gain information about the impacts legislation can have on people with MS or other disability's.

Representative Michael Burgess of Texas (Co-Chair) of the congressional MS Caucus speaks to his colleagues about MS In the USA and marking World MS Day 2010.

For more information on World MS day and Multiple Sclerosis go to the National Multiple Sclerosis Society web page::     http://www.nationalmssociety.org/get-involved/events/world-ms-day/index.aspx

                                                                                                                                                                          ellie