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11/24/11

Permalink 10:27:00 am, by eleanor Email , 1534 words   English (US) latin1
Categories: thoughts, Coping, Advocacy, adapting activities

COMMUNICATING WITH PEOPLE WITH SPEECH PROBLEMS

The Holiday Season is a time for meeting with new and old friends in your home or at outside events.  Whether it's a family, community or other special holiday event chatting and talking is what we mostly do at these events. This year you may meet someone new or someone that you might not have seen for awhile that has changed since you last met them. And as my blog is about disability of course I'm talking about someone with a specific disability.

In this blog I want to talk about people with a speech disability.  Actually to be more correct : a speech disorder or a language disorder.  A speech disorder is when a person has difficulty pronouncing sounds or articulating. Stuttering is an example of a speech disorder like in the movie "The King's Speech".

Recently there was an article and video in the news by a courageous young man who has a stuttering problem.image When Philip was told by his teacher that he was not to talk in class as she felt that his speaking was disruptive he didn't do what most people with a stuttering problem would have done, kept quiet. He fought back.

For more information see the article  from the NY Times .   <http://www.nytimes.com/2011/10/11/education/11stutter.html?hp        

And when you do be sure to click on his YouTubechannel .

The other speech disorder category is  Articulating Disorders. This  can be a simple childhood difficulty in saying certain vowels or consonants. But in adults it is most likely a motor speech disorder (Apraxia) . Here the persons brain and their oral muscles required to make sounds are not in synch. This can be due to a stroke,traumatic brain injury,dementia,tumors and progressive neurological disorders like Multiple Sclerosis.

The language Disorder category can be divided into a receptive or expressive disorder.

A receptive language disorder is when a person has trouble understanding others . This is caused by a severe injury to the brain by trauma or disease.

An expressive language disorder in a person means that for them sharing thoughts, ideas and feelings in a fluent manner is difficult. This can be due to a medical problem like a brain trauma or stroke resulting in a fissure. Or the cause can be unknown. It can mildly affect them or be more severely limiting.

imageA recent example is that of  Rep.Gabrielle Gifford who was shot on Jan 8, 2011.  As a result of the gunshot to her head her speech as well as her motor ability was affected. Below is a video from the Huffington Post with Rep.Gifford speaking. Remember she has come a long long way with hours of therapy. And she is very lucky to be alive.


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As a physical therapist I have worked with many patients or clients who had speech problems for many decades of my life.  People with strokes, multiple sclerosis, ALS, Parkinson's,traumatic head injuries and young children with developmental disabilities. Many of them had speech disorders and or language disorders. I wish I could tell you that I found it very easy and did a wonderful job in understanding and working with them.

The truth was I had a lot of difficulty at first and had to learn to listen carefully and not be afraid to say would you repeat that? I want to understand you.  It's my fault not yours. And over time I did much better.

I remember going to a lecture where a lawyer who had cerebral palsy also had a speech disorder. Her lecture was about the disabled and the legal system.  At first I couldn't understand her and felt angry, frustrated and annoyed. But I wanted to hear what she had to say .  So I basically zeroed in (Zen like) and listened very carefully. And 10 minutes into her lecture I heard everything she said and understood it all. In someway it's similar to listening to a person with an unfamiliar accent.

When the lecture was over I went to lunch with the other people at the lecture. We discussed her speech disorder and many of the members there also had the same problem I did.  Some of the people were not able to understand her as well as I did.  Others didn't have a problem at all. Those that had no problem  were the people who worked with the developmentally disabled and had accustomed  themself to listening and understanding people with this particular speech pattern.

But they all felt the lecture was well worth it. And everyone had the greatest admiration for her. In fact this was 50 years ago and is still very much in my mind.  I guess she made a lasting positive impression on me.

I also have a son with a mild neurological problem that affected his motor skills and his speech. The motor skill's are hardly visible now that he's become an adult. But except for bike riding he's not into sports. But speech can still be a problem.  His problem is in expressive language. He's very bright took advanced placement courses in high school and graduated from a top college. But he can not fluidly express his views or opinions easily unless he prepares ahead of time. The place where it's most frustrating to him is when he's at social events which he does go to. And it's because you  converse many times in groups where you are expected to speak fast back and forth. If you have to organize your thoughts before you speak so your speech is fluent people have moved on.

Ironically with my multiple sclerosis I can also have a speech problem called dysarthria. Because of weakness in the oral muscles the co-ordination with thoughts being expressed in speech become slower and can actually start to slur. But my biggest problem is word finding which to me is really disruptive in a social situation. It's beyond the "senior moment" category.  One of the things I found that large noisy groups tired me and made my speech and word finding worse. Discussing this with a Neuropsychologist affirmed my decision to look for small groups and rest always before I go out and need to converse.

I do understand my son so much more now that I have a problem myself and have greater respect and admiration for how well he's done with his life.

Being able to handle your own speech problem is critical to a full life. Just as the person with stuttering did most people with speech problems have years of speech therapy. Which is very helpful for them like with Rep. Gifford. But it is not always a cure. Therefore learning how to handle your speech idiosyncrasies is critical. It is important for both the person with a speech problem and the person your talking to. To communicate you must work together to improve interactions. Here are some tips for both speaker and listener.

    Tips for the Person With A speech problem

 Introduce your topic with a single word or short phrase before beginning to speak in more complete sentences
    Check with the listeners to make sure that they understand you
    Speak slowly and loudly; pause frequently
    Try to limit conversations when you feel tired, when your speech will be harder to understand
    If you become frustrated, try to use other methods, such as pointing or gesturing, to get your message across, or take a rest and try again later

Children may need additional help to remember to use these strategies.

Tips for the Listener

    Reduce distractions and background noise
    Pay attention to the speaker
    Watch the person as he or she talks
    Let the speaker know when you have difficulty understanding him or her
    Repeat only the part of the message that you understood so that the speaker does not have to repeat the entire message
    If you still don't understand the message, ask yes/no questions or have the speaker write his or her message to you.

  I also asked my son to write a little about his own experiences with his speech  problem, here's what he had to say.

These are my main problems: when I'm trying to talk while working out what I'm going to say, I can have a tendency to insert filler words and sounds when the specific words aren't coming together right. Alternatively when I have exactly what I want to say worked out, (like when the topic is one I'm familiar with) I can start talking faster and louder than is appropriate.

The main thing I've learned in trying to improve how well I can talk, is the importance of listening well. I've had to practice condensing what I say into smaller bits of speech, which helps me avoid both cascading filler words, and creeping volume. The only advice I can think of if you're talking to someone who has a problem like mine is not to be afraid to say, "You're sounding a little incoherent, do you need a moment to compose your thoughts?" or "Could you talk a little quieter?"

When dealing with someone with a speech problem, don't be afraid to talk about the problem if it will help you understand each other. Remember, speech is only the method. The goal is communication.

Have a wonderful Holiday Season!

ellie             P1000293

11/01/11

Permalink 12:39:00 pm, by eleanor Email , 526 words   English (US) latin1
Categories: my life, Thoughts, information

When you start losing functional ability in MS

I was taking my afternoon nap in the MRI machine the other day.  With all the banging , bells and whistles that you endure from that machine scanning your brain and cervical spine it can be nerve wracking.  But I had the technicians turn on nice music, put a blanket over me and  took off my shoes. Then when I was really comfy with positioning a very nice thing happened.

image

When the MRI first started it's banging I suddenly remembered a movie by Fellini staged in 1914  "And The Ship Sailed On".  As the movie had a lot of similar noises I was able to relive one of my favorite movie's with sound effects .
imageI meditated but I was soon off again in another movie "The African Queen" with Humphrey Bogart. I took Katharine Hepburn's place of course. And again the MRI noises made for perfect sound effects for a Riverboat going up the Nile. 
image A little more meditation and I was on another Riverboat this time going up the Mississippi. I replaced Ava Gardener falling in love with the charming gambler played by Howard Keel. And the bang bang of MRI sounding like the paddle wheels of a River Boat continued.

By that time I was exhausted from my adventures and almost went to sleep. But as I had to stay awake so I was sure I didn't move I was relieved to see the end coming soon.

After it was finished I felt refreshed and relaxed believe it or not. I think it was conditioned by the feeling I had of being in control.

This was not my first MRI so I was well prepared. But being so relaxed that reliving those movies said a lot for my emotional state. And lets face it when you feel your losing again in MS you can feel emotional. And I know that meditating helped too just as it has in the past. For more information on MS and the MRI click to see recent video by the NMSS

In my last blog I mentioned my concern about my MS condition. And when I did see my Neurologist he felt it was time to reassess treatment. He took me off my monthly-sol-u-med as it was losing it's effectiveness and I am a Diabetic. Sol-u-med increases blood sugar levels. He also ruled out the new oral drug Gilenea also due to diabetes and other vision problems I have. Soooooooo there is always Tysurbi to consider.

As welI as the MRI I had 10 vials of blood taken for tests. I felt like I had a blood letting (or bleeding ) like they did in the old days. Next I'm scheduled for cognitive testing. Then I'll see the Psychologist to review the results. I see my Neurologist in February. And in between I see my ophthalmologist and my family physician and check my glucose levels etc.. Then in January I  have a Urodynamic Testing with my Urologist.

Happy Holiday Season ?  I think this is a time to remember.....

image

"It isn't what happens to us that causes us to suffer: it's what we say to ourselves about what happens."

-Pema Chodron

Be well, ellie

10/11/11

Permalink 09:24:00 pm, by eleanor Email , 710 words   English (US) latin1
Categories: my life, exacerbations, Thoughts

WHY DO I ALWAYS SAY, "I'M FINE" ?

P1000745

When someone asks me "how are you?"  I always say" I'm fine" even if I feel like an October wilted vine. Then if someone suggests that I'm looking tired I usually  say "I'M FINE" even if I feel like a November crumbling vine.  And if I'm never around that's  usually it's because" the vine" like in December has fallen apart and it's time for me to hibernate too. 

It's no fun for me to be around people when I'm very very tired due to MS fatigue. I feel that when I look tired it's harder for other people too. If I'm tired and don't look tired which I make an effort to do it's manageable. Which is good otherwise I would be a recluse.

If you have read my previous blogs you will know that I have been much better this past year since I started taking Ampyra. In August I started down hill again. As I always get better I expected the same slow but definite recovery. But one week after my monthly Sol-u-med instead of maintaining higher functioning I really went into a relapse and I was so very very tired and achy. Also I kept losing and ended up spending more time in my electric wheelchair as I could only take 2-4 steps. Of course I waited hoping for my body to recover.

But then I had had it and called my Neuro's office on a Friday afternoon to request an earlier sol-med treatment the following week. After checking with the Doctor they got back to me Monday morning and asked how I was. Of course I said "I'm fine". Then I realized and laughed and said: " No I am not fine." And as the Doc had approved my earlier sol-u-med and we set up my appointment.

I've been thinking about my saying "I'm fine" when I was requesting an earlier sol-u-med treatment. It sounds like a ridiculous statement in the circumstance. But it was my automatic response to "how are you". I think I respond that way meaning 'I'm handling this emotionally and making necessary adaptations, resting more, using assistive equipment etc. and I did feel less tired'.  But I  called my Doc because I needed more help as I felt I should be getting better.

When  I was having my sol-u-med treatment  the nurse in charge understood what I meant by  saying "I'm fine".  "It's you attitude" she said.  "Your MS symptoms are worse but your not falling apart. Your handling it.  And that's what really matters when you have a chronic progressive disease like MS."

And what also helped was knowing they would get back to me with help. I was also asked if I wanted to see my Neuro both on this last visit and the prior month as I wasn't doing as well. I declined as I always expect to get better. But they did reschedule me with an earlier visit with my Neuro Doc .

Now when I got home after my sol-u-med treatment my walking ability increased.  And it lasted for the next 2 days I could take up to 300 steps. But then I was right back down  again to 2-4 steps and arms too! That has never happened before since I started on sol-u-med but I hung in and I was better after 3-4 day's. Then again 3 days later I was back down again. I do keep a record so I will be prepared for a talk with my Neuro on my coming visit.

It's so important to be positive about what you can do and accommodate your MS in your life.  But it's also important to recognize when a negative change is occurring and to act on it. I am a Diabetic too so sol-u-med  can not be given in a large or successive doses.

I have done well on Rebif but I also did well on Betarseron than it stopped helping. This may be what's happening. They call it a Breakthru. So I may be thinking about a new immuno-modifying drug change. Or maybe something else or just a patiently wait and see.  Luckily I have a great trust and respect for my Neurologist.

I'm fine but my MS symptoms are not fine and I need help of some kind.

image

                                                                      ellie

09/24/11

Permalink 12:08:00 pm, by eleanor Email , 513 words   English (US) latin1
Categories: thoughts, The Law, Advocacy

COMMUNITY LIVING-THE MISSING PIECE OF LONG TERM CARE

Seven percent of Medicaid long term care users( the elderly and the disabled) use 52% of all Medicaid Spending . This is according to the KAISER COMMISSION ON Medicaid and the Uninsured. This is not something that everyone is aware of.

As I mentioned in my last blog that Community Living was less expensive and was desired by a large percentage of people who are currently in nursing homes.  It also fulfills the legal requirements of Olmstead. In 1999 the  Supreme Court ruled that the ADA legislation meant that people with disabilities should be living or educated in the least restrictive environment.

This past week there were two articles that reinforced to me that Community Living should be put on the "front Burner".  . It will save money in Medicaid as well as meet patients needs and follow the Olmstead requirements. But it will take careful planning as each state controls  Medicaid in their state. And that means how Medicaid money is used  and  which citizens are able to access it

The first article was in the New York Times. It was a shock to me as I am a senior  person with a disability due to MS in New York State. The article was based on a scorecard by the AARP which rated all 50 states and the District of Columbia on the availability and quality of services for long-term care.  My state New York rated 44th. Minnesota, Washington and Oregon were at the top of the list, while Mississippi, Alabama and West Virginia brought up the rear.

My state NY  had several areas for its poor marks. Interestingly it ranked 50th in the percentage of the disabled adults that were living in the community (Community Living) and receiving the care and the support they needed.  It also ranked a poorly ( 48th) on support for family caregivers. What this refers to is respite care and access to counseling. Yet as NY ranks 2nd in enrolling low-income disabled adults in Medicaid it appears to be a priority problem. Which they must solve.

image

The second article was in the Washington post and it and concerned the care of people with Alzheimer's in the United States.This diseases affects 5.4 million Americans currently and in a rapidly aging population it could be a budget buster for Medicare Medicaid and families.  In the article they mentioned that President Obama was developing a national  plan for both research and help in the care those with Alzheimer's and their families. Here again family's want to be able to care for their parent or spouse with Alzheimer's Disease in their home as long as they are able. So after they have used up all their money and will need to use Medicaid in the current situation they would not have to place their parent or spouse in a nursing home. Here again Community Living would solve their problem as well as decrease cost for the State.

For more information on what your state is doing: http://www.longtermscorecard.org/

P1000743

One of the hundred's of Monarch Butterfly's that visited my

Butterfly Bush in my garden this summer.

Be well, ellie

08/27/11

Permalink 03:06:00 pm, by eleanor Email , 906 words   English (US) latin1
Categories: thoughts, The Law, Advocacy

WHAT'S ALL THIS ABOUT COMMUNITY LIVING?

 

image

 

Living in the community is a long cherished dream for many with disabilities. But it was the awareness of the care of those with developmental disability 's that started the ball rolling to question why were we institutionalizing the disabled. In fact seeing the treatment of those who were in institutions was one of the factors in the passage of the ADA in 1990. This was following up by the Olmstead Act in 1999 after cases were brought to the Supreme Court. The Supreme Court's decision settled the issue legally. Their ruling was that people with disabilities have a right to choose the least restrictive setting whenever it was possible. That meant not forcing them into segregated settings in order for them to receive their necessary services thru Medicaid.

Yet it's been a slog with many who have had to fight the established system to be able to return to a life integrated in the community. In fact there have been 89 'Olmstead ' lawsuits in 35 states and 90 'Related cases to Olmstead also in 35 states.

It's now 2011 and only 26 states have published Olmstead plans and 18 states have   alternative responses. And there are still seven states (DC,FL,ID,NM,RI,SD,TN) who have neither an Olmstead plan or an alternative response to Olmstead. For more information from this report go to : http://www.facebook.com/event.php?eid=133211216769552 

The average cost of a person with a developmental /cognitive disability living in a State Institution in NY State  is $365,000 compared to 1/3 of that cost in a group home. The average annual cost of a nursing home nationally is about $75,000, according to a study by the AARP. Community services that allow people to remain at home are about $23,000.  One in Five (270,000 out of 1.35 million) nursing home residents indicated they would prefer to live in their community according to a survey by the centers for Medicare and Medicaid services. 

Change is hard! And not everybody wants change.  I think a look back in time would be useful and put current issues into perspective.

Prior to the late 18th and early 19th century people with developmental disabilities lived in the community mostly with their extended families. Their quality of life depended on their family and the community they lived in.

However, the enlightenment movement changed this. This worldwide movement felt that all people were capable of reasoning and we should look to the similarity in people as this was more important than  differences.  This philosophy led to the  establishment of State Schools to prepare individuals with disabilities for employment and independence.

However outside these school's no other opportunities were developed for living in the community and employment.  This was also the time when school's for the deaf and the blind were also established.

Sadly by the 1920s the State School's focus unfortunately  went from educational and independence to custodial care.  Younger and younger children were placed in the care of the State Schools.  The eugenics movement with forced sterilization of disabled and mentally challenged people including children was prevalent at this time. In fact over 30 States adopted compulsory sterilization and more than 60,000 disabled  people were sterilized.

In the 1930's the placement of disabled people in State Schools grew remarkably due to the financial burdens people had in the Depression.  New born infants were now left in the care of State Schools. The school's became grossly overcrowded and underfunded. Sadly the life expectancy of a child in a State School was 18 years of age.

There was no change in this horrendous situation until the 1960s when President Kennedy raised the awareness of the status of people with developmental disabilities.  He appointed a special panel on mental retardation.  The goal was to improve their care and develop new appropriate programs for them.

The Civil Rights movement also inspired many to think differently about the developmentally disabled/cognitively impaired. The Special Olympics at this time was also being born in the home of Eunice Shriver who was President Kennedy's sister.

imageThen in the 1970's there was the explosive exposure by newspapers and television of the deplorable conditions at the Willowbrook State School in Staten Island N.Y.

It was a barren warehouse for the cognitively challenged/developmentally disabled.

And it was not unique in State Schools across the country.

image                                                                                                          

                                                  

Here to the shock of many the children lay naked and untended on the floor in locked wards.

                                                                                                                                                               

A lawsuit was filed against the State of New York in 1972.

In 1975 a Consent Judgment was signed in Federal Court allowing the residents to be transferred to group homes .

The last children of the original 5000 left the Institution in 1986. http://link.email.washingtonpost.com/r/1BAF0O/A7IF55/4C53BU/Z9QCTK/98LYW/YT/h

This started the movement to de- institutionalize those who were developmentally disabled/cognitively impaired.

In 1970 to the world's first Center for Independent living was opened.

In 1973 The Rehabilitation Act addressing the discrimination of disabled people passed.

In 1975 the Education for All Handicapped Children Act was  passed guaranteeing those with with disabilities the right to a "free appropriate public education." In 1990 the law was renamed Individuals with Disabilities Education Act.

In 1985 The Mental Illness Bill of Rights ACT is passed.

In 1990 the most sweeping disability rights legislation in history The ADA passed.

In 1999 the Supreme Court ruled in Olmstead vs. L.C and F.W.

And here we are: Still fighting but making slow and steady progress.

An inspiration and a reminder of what is possible.

More on Community Living and Long Term Care for the disabled and elderly in my next blog. Meanwhile as promised I leave you with one of the pictures from my garden.                                                                      

 P1000293        ellie

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