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Permalink 08:18:58 pm, by eleanor Email , 534 words   English (US) latin1
Categories: thoughts, The Law, Technology

Electric Wheelchairs and Medicare.

What’s a day! And how great it is to get outside under my own power in my electric wheelchair. Having been inside for so much of the winter, breathing fresh air feels so amazing. It is especially so this Spring, as I was recently forced to use my manual wheelchair for almost a week. Though it felt like a month!

You see, the controller on my electric wheelchair stopped working. And of course, it was past the measly one year warranty. I was shocked with what I heard. If it was broken, the only solution was to replace it, not repair it. And the cost was $1,000.00! After my oldest son Sean made many phone calls and a visit to local vendor, we did find a source that was a bit lower. What a pain, though.

My electric wheelchair has been a godsend. I am not as tired since I started using it both inside as well as outside. And I’m capable of doing so much more. I feel like I am part of the family now. However, as we did buy this wheelchair ourselves, we also buy the replacement parts ourselves! And the replacement parts are very expensive. If I had bought it through Medicare they would have paid the thousand dollars without a without a problem.

So why didn’t I go through Medicare, or even try to go through Medicare? Because I knew they would deny me. You see, I can still push myself in my house with my manual wheelchair over my hardwood floors. That is Medicare’s “in home only” policy for equipment. They will help you get to your bathroom, bedroom, and kitchen. They consider those areas the necessities of life. And that is the only thing they are required to cover.

The greatest necessity in my life, is being a part of the community. That is the end goal of all rehabilitation. You can’t do that if you can’t get outside into the community. But, Medicare doesn’t cover that. That’s not their criteria.
They don’t give power wheelchairs if pushing your manual wheelchair any distance outside your house is not possible.

Here are some links concerning this policy.

I wasn’t about to wait till I could not push myself with my manual wheelchair to my bedroom my kitchen or my bathroom. For me that would be too late, and what a waste of my life here and now. I wanted to get out in my community while I still can. MS is a progressive disease, so my time is now. Carpe Diem!
So, hear I am back on track! Out and about. Nothing better than being out as Spring arrives! But once out, one notices those poor curb cuts again. I think I’m going to try to do something. I’ve talked to city hall before, and the results were less than stellar. It’s a big project for them, amidst many other projects, but staying on top will keep it to the top of the pile. Hopefully. My next post will be about Project Curb Cut!

Permalink 08:13:23 pm, by eleanor Email , 653 words   English (US) latin1
Categories: my life, Thoughts, Adapting Activities, information, Technology, Gardening

Gardening Solutions

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

Permalink 08:12:09 pm, by eleanor Email , 607 words   English (US) latin1
Categories: Announcements, my life, Thoughts, Adapting Activities

New living room

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

Permalink 08:10:41 pm, by eleanor Email , 576 words   English (US) latin1
Categories: Announcements, Advocacy, Thoughts, information

This is National Multiple Sclerosis Week

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.

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Ellie’s Rules for Coping Well with MS and Disability
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