Living Well With MS & Disabilities: Ellie's Blog

This is such a wonderful time of the year.  It's a time of hope and love, a time where we can be with family and friends that we haven't seen for while.  So as we gather  in the various events with family or friends we have to remember those that are left out. Be sure to contact those that couldn't attend it will mean a lot to them.

But don't forget there can be some who are attending but are really not as totally present as they could be. I'm referring here to people with a variety of disabilities.  Some mild some more severe, some noticeable some less noticeable and some quite well hidden .

                    HEARING IMPAIRMENTS

Starting with loss of hearing I'm reminded of the visit we made to older friends we hadn't seen for quite awhile.  We were sitting around the table talking when suddenly Steve said," I can't hear a word you people are saying".  We sat there at first shocked then of course that's why he was very quiet.  I was so glad that he said that as it gave us a chance to talk about what you can do to include people who have a hearing loss.  We asked him what could we do to make it better for him. And  he said ,"you're talking too fast and not loud enough".  I also remembered from my experience as a PT in dealing with people with hearing loss that it is good to look directly at the person. This way he could read my lips and my visual expression so he wouldn't lose the nuance in the spoken word.

We continued our visit trying to keep in mind these four factors. Speak slowly, clearly and loud enough to be heard and look at the person directly. And it worked very well.

Ten Commandments for Interacting
With Hearing Impaired Persons

I.          Thou shalt not speak to the listener from another room.

II.        Thou shalt not speak with your back toward the listener or
            while the listener?s back is toward you.           

III.       Thou shalt not speak as you walk away.

IV.       Thou shalt not turn your face away from the listener while
            continuing to talk.

V.        Thou shalt not speak while background noise (water 
            running, radio or TV playing, people talking, etc.) is as or louder than your voice.

VI.      Thou shalt not start to speak before getting the listener?s
           attention and while the listener is reading, engrossed in a TV
           program, or otherwise preoccupied.

VII.    Thou shalt not speak while your face is hidden in shadow.

VIII.  Thou shalt not obstruct a view of your mouth while speaking.

IX.     Thou shalt not speak rapidly or by shouting.

X.       Thou shalt be patient, supportive and loving when the
           listener appears to have difficulty comprehending what has
           been said.

And some basic rules for people who are Hearing Impaired to help them in their ability in lipreading   http://www.afthi.org/ 

                       VISUAL IMPAIRMENTS

And when I think of someone with vision loss my brother- in-law is the one that first comes to mind. He has lost his central vision due to wet macular degeneration. When he visits he can see you peripherally but not if you approach him face on.  Sitting in our living room he takes out his special magnifying glass to be able to read. But this way he can share with us his thoughts on the article we're reading and talking about.

But there are many people who don't have as severe a visual loss but due to other medical reasons wouldn't be able to read it easily either. They don't have their close up glasses or the print is just too small even with their glasses. Or the light is not bright enough or it's too glary to read by. So they just pass the magazine along without reading and not being able to to participate in the conversation about it.

If you think you know one of your guests probably could have a problem with reading close up don't put small print magazines or coffee table books on your coffee table.  And if that's still a problem and people forgot to bring their reading glasses you can always purchase close up glasses in a drugstore. They are available in different strengths.  I myself have three pair with three different strengths depending on my eyes at the time.

And be sure that a person with low vision is sitting where there is no glare and very good light which  they can shine directly on the page.Do not leave things where they can be bumped into or tripped over. This can cause a visually impaired person to fall and hurt themselves, or damage the thing they have fallen onto.  Remember to have sufficient light in the hallways,steps,bathrooms and their bedroom if they're staying over. Remember no monochromatic table settings.  Contrast is essential for people with visual loss. 

HINTS AND TIPS FOR INTERACTING WITH THOSE WHO HAVE VERY LOW VISION OR ARE BLIND.

• Speak in a normal tone of voice. People with vision problems usually have normal hearing.
• Introduce yourself ? recognizing voices can be difficult for some people.
• Speak directly to a person with impaired vision. Most people can answer for themselves.
• Rather than using gestures and hand signals to convey instructions, directions or size, describe the information.
• Be clear with your instructions. Many people use "right" when they mean "yes"; other words like "here", "there", or "this" are vague and don't give enough information.
• It's o.k. to use words like "look" or "see", as they are part of normal conversation. People with impaired vision use these words themselves.
• Let a person with impaired vision know you are leaving so that he/she won't be left talking to him/herself.
• Last but not least, treat people with impaired vision as you would want to be treated.

If you go out to the local restaurant remember they will need help with reading that small print menu in low light. And if you go to church ,temple or mosque ask for a large print copy of the service sheet ands hymns if they have them.

An excellent resource is the site of the American foundation for the blind.  They also have a wonderful section on senior citizens which can be very helpful. Their site is : http://www.afb.org/ 

Have a wonderful holiday season             ellie

I've been thinking a lot about balance lately. Probably because I feel that I'm fighting hard to stay in balance.  When we think of multiple sclerosis and balance safe mobility is what comes to mind.  But the balance I'm talking about is more than just safety in mobility, although that is critically important.

I have found over the years that to successfully cope with the ups and downs and more downs of Multiple Sclerosis having control of balance in all spheres of your life is critical. Control of your mobility, energy, emotions, and being able to do the activities that you want to do make such a difference in your life.

And the latter is what I want to talk about here. With loss of mobility and decreased energy (and that insidious MS fatigue) you lose time to do all you want to do. You find that how you spend your time, what you read, go to see,things you do is so dependant on MS.  When I was young and raising a family and working, gradually I was able to do less and less of what I wanted. My time was eaten up by my family and my work. Before I retired fully at 61 I had no energy left to do much of anything else even when working part time.

When I first retired I suddenly had all that missing time. I found myself reading books that I had to wanted to for years. And to take up activities and hobbies I had given up that I had no time for like gardening.  I also took up learning how to use the computer.I've gradually been writing my family history which I share online. This family history was very helpful when we lost both a younger sister and an older brother within a year.  We share photographs, old family stories and memories. I also use the computer to make my own cards so their more personal.And of course there is e-mail.

These activities are ones I am able to pick up and do when I'm good (in a remission and my energy is up)and when my energy lags the project will still be there to pick up again.  

But the one area I found that wasn't as easy was going back out and being part of a group again or picking up with old friends.  As MS is inconsistent from day to day or hour to hour making plans was and still is difficult .  I was also losing mobility. In 15 years I went from using a cane to a walker to a manual wheelchair then an electric wheelchair.

A former patient of mine who had Multiple sclerosis called me when she heard that I too had multiple sclerosis and asked if she could be my friend.  In our conversation she mentioned that I should not to be surprised if I lost friends. She was right.When you can't plan, are in and out of the social scene and so tired so much of the time it becomes a problem.

Late last winter I changed doctors and meds. Then in the spring I went into a marvelous remission. I was able to go back to using a cane or walker for short distances.  I also had much less fatigue.  This new me decided to use my increased energy to do more with people like visiting my family, trying to renew old friendships and to meet new people.  I never understood the Barbara Streisand song " People who need people are the luckiest people in the world".  Being more isolated and away from people due to MS I now understand.

So when I went into a relapse again in the end of September I fought it. I tried to keep doing things the same as when I was in that wonderful spring-summer remission. Of course I couldn't and I just made myself more tired, achy and miserable. I was walking or wheeling around the house saying I'm just so tired ..I'm so tired. Then I began to think to myself just saying it had to make me more tired! 

Recognizing that a change of attitude was needed I decided to take up meditation again. And while meditating I remembered the Buddhist philosophy of unhappiness. They state that many times we cause our own unhappiness when we cling to what had been  making us happy and can no longer be.

Admitting to myself that yes I was in a relapse ( and the thought that maybe I would never get back to where I was in the summer is what was really bumming me out).  But as I meditated the reality that even though I was in a relapse I was still better than I had been for years. I certainly had survived being much worse. I knew I could use what I have learned during those years when I was not as good.. 

This realization really helped me. I felt I could work on  starting to get back into balance again. And without the baggage of fear of what might be, I knew things would be much easier.

So when I felt that fatigue coming I stopped what I was doing and rested. I didn't wait until I was collapsing. I found that just as little as 15 to 30 minutes could help.  Then I could get up and do some more things.  To be honest I'm not doing as much as I'd like. I'm trying to prioritize what's really important to me and what I can let slip. But the one very big plus is I'm not walking around in a state of exhaustion ready to snap at people all day!  I'm enjoying more what I'm able to do.

A perfect example of how well this can work and help                               you to do what is really  important to you was when I went to church this past Sunday.  We go to an Episcopal church with a sung- Eucharist service.  We stand and  kneel and sit and stand and kneel and sit again and again.  We sing hymns and response's as well as praying  and listening. It's a beautiful service in a beautiful church with wonderful people but it's a physical event for me.  This spring and summer I was able to stand and sing out those lovely hymns I love as well as  participating more fully in the rest of the service.  But the last few times I went I tried to do this which I couldn't. And because I wouldn't admit to myself that I was becoming totally exhausted by trying I missed a part of the service which was important to me. That was "fellowship" going to coffee afterwards and talking to other members of congregation

So last Sunday I listened to my body and when the fatigue started I stopped and sat till it passed.  I still participated in the church service I just didn't do as much standing and sitting, kneeling  etcetera. And I made it over to coffee to chat and reconnect with people.  And then when I came home I took a nap.

We're having my nephew his wife and their two children over for Thanksgiving.  I'm putting this whole rest properly and prioritize routine in place.  If something doesn't get done it doesn't become an epic event. What matters is that I'm rested and there is food on the table(thanks to my son's) and we have a happy day with family and were all rested.

I hope all of you will do the same thing knowing your priorities and what's most important to you and then follow through. Have a wonderful Thanksgiving with your family and friends.

Stay well rested!!    Ellie