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Wanda Squires

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Good Afternoon Everyone,

My Mother was diagnosed with CIDP in August 07 after months of doctor visits and hospitalizations.

She was suppose to have IVG Treatments once a month to start but because she did not have health insurance, and was turned down for medicade, she started receiving the treatment every 6-8 weeks. The treatments were working, so we thought because she was feeling stronger, her hands which started to curl was now straightening out.

Because of the situation with her and no health insurance her Doctor was afraid that the hospital would not admit her after her 3rd treatment because of the cost, and recommended that we find a trial study and get her in the study so that her treatment would be covered.

We called around to various clinical trials and John Hopkins told us that they were having a study soon and we should bring her for testing to be admited to the study.

Well they did the testing and diagnosed my Mother with ALS instead this March.

John Hospkins told us to take her home (she lives in South Carolina and we live in the New York/Connecticut area) and make her as comfortable as possible because she has only 3-6 months to live. I could not understand this especially since she was still walking and using her arms (though weak and needed help sometimes). But they told us that she will develope pneumonia due to swallowing problems, and it will go down hill from there. As predicted she developed pneumonia, had a feeding tube inserted all within a three week period.

Last week my Mother was placed on life support because she had difficulty breathing. She got a little stronger and was able to come off of life suppport but they gave her a trach, which she started using it 24 hours a day, now she is down to about 4 hours a day.

We also found out that during the time in which she was on support her Doctor gave her the IVG treatment, which usually kicks in after the 7th day. Is this normal treatment for ALS?

My sisters and I have only days to catch up on ways in which we can help her. The hospital wants to send her to a nursing home so that she can have rehab for the trach. The problem is that the nursing home is in Ohio, because they are telling me that South Carolina does not have any trach facilities and that they send all patients to Ohio. We are trying to get her up to New York so that she can be closer to us.

Is this normal for someone who is not expected to survive to be sent to a nursing home to learn how to eat and swallow again?

With that being said I am going down to South Carolina this week and I would like to know what questions I should ask.

Sorry to make this so long but I did not know how to shorten what we have been thru in the last 7 weeks.

Thank you for listening

Wanda
 

brooksea

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Wanda,

Very sorry for all your mother has gone through.

Was she admitted to a hospital in South Carolina? If so, my guess is they know nothing about ALS. It sounds like your mother needs assistance breathing, whether it be BiPap or Vent.

John Hopkins - didn't they prescribe Cough Assist and Suction machines and BiPap? Was your mother against all of this? Doesn't sound like it if she agreed to trach. It sounds like her muscles in her diaphragm are weakening

You need to contact the ALSA and the MDA in South Carolina for assistance. Also, here is the name of someone that will be very helpful if you are willing to call her (she is in North Carolina, but can help just the same):

Mary Beth Geise, RN
Resource Nurse Consultant
617.441.7250
[email protected]

Whatever you do, don't allow her to continue being cared for by a team that seems to know nothing about ALS. I know it must be difficult living so far away.
 

Wanda Squires

New member
Joined
Apr 29, 2008
Messages
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Loved one DX
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US
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New York
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CJ

Thank you for the information. Yes my Mother is in the hospital in South Carolina. No John Hopkins did not offer anything in the way of advise except to call hospice and make her very comfortable. Today I get a call from the hospital telling me that they are starting to reduce her time on the machine. I will start calling Mary Beth and the South Carolina chapter for assistance to see what our next step(s) should be.

Again thank you

Wanda
 

fiddleplayer51

Distinguished member
Joined
Mar 24, 2008
Messages
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Diagnosis
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Wanda,
I'm so sorry about your mother. It must be so difficult to be so far away from her and be trying to assist her and get information about steps to take from such a distance.
I don't know what part of South Carolina she's in, but here are the support group listings found on the ALS Association website for South Carolina:

The ALS Association South Carolina Chapter Patient & Family Services

"Our Chapter offers a full range of services to guide and assist you as you learn more about ALS. Here you will find pertinent information for patients, caregivers, family members, friends and healthcare workers. Our staff is here Monday through Friday to answer any questions you may have. Please don't hesitate to call or e-mail us for more information."


The ALS Association South Carolina Chapter Support Groups

Charleston ALS SG
Serving South East South Carolina Area
When: Third Monday, Every Month 6:00 7:30 PM
Where: Mt. Pleasant Presbyterian Church
302 Hibben St.
Room S206
Contact: Chapter Office 866-439-5902
[email protected]

Columbia ALS SG
Serving the Midlands of South Carolina
When: Third Tuesday, Every Month 6:00 7:30 PM
Where: Columbia Oncology Associates
166 Stoneridge Dr.
Suite 100,
Columbia, SC 29210
Contact: Chapter Office 866-439-5902
[email protected]

Greenville, SC ALS SG
Serving Western South Carolina Area
When: 1st Monday, Every Month, 6:30pm
Where: Patewood Office Building, 255 Enterprise Drive
1st floor
Contact: Sherril Porterfield 864.455.4624
[email protected]

Myrtle Beach Area ALS SG
Serving North East South Carolina Area
When: 2nd Saturday, Every Month
Where: Socastee United Methodist Church
5575 Dick Pond Rd.
Fellowship Hall
Contact: Lynn Negley 843.650.6106
[email protected]

Maybe you can call or email the listed contacts for ideas on how to proceed.
All the best to you and your family in this difficult time.
Jane
 

CindyM

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New England
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Hi Wanda- I am glad you found us! I am hoping also that your Mom's quality of life may improve once she is being treated at a facility that knows about ALS and how to handle it. I heard they tell everybody about the short life expectancy but we've seen around here that people sometimes stay on longer, especially once they get the right equipment like pi-paps and tubes and such.
 
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