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Zina Perry

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Jan 5, 2008
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Loved one DX
Diagnosis
12/2007
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US
State
Texas
City
Rusk
Hello All,
Just wondering if everyone attends an ALS clinic? My husband, Mike was diagnosed in Ocotber and we got a second opinion in December and after a muscle biopsy they agreed he had ALS. Do I need to be carrying him to a clinic or continue to use the doctor that confirmed. His onset is respiratory and he has no other symptoms, but must use the bipap about 20 hours a day. His oxygen levels are getting lower and we have it available if needed. The WONDERFUL pulmonolgist that we use told him he was going to sleep and not wake up and that he thought he would die before he lost the use of his limbs. At times, I really don't think he has ALS and then again I know something is seriously wrong. I have read so many posts and have so much compassion for everyone and the trials and tribulations that they face each day. He overcame cancer but I must admit that ALS is a lot worse than that. My prayers are with all of you each day.

God Bless,
Zina Akin Perry
 

brooksea

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Sep 27, 2006
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HM
Hey Zina,

So sorry about your husband.

We also have discussed whether to go back to the original neuro that diagnosed my husband or to stay with the ALS Clinic. We decided to stay with the clinic as they are the experts and can judge what you will be needing in advance. Also, all the specialists are there in one place so you do not have the need to travel to different locations, which may become difficult as the disease advances. It is also cheaper to pay one co-pay than 4 or 5. Another plus is the ALSA is there in case you need something from their loan closet...it can be arranged for you t pick it at your appointment if you let the clinic know in advance.

Hope that helps. We were very partial to my husbands neuro, but had to go with the clinic.
 

hopingforthebest

Distinguished member
Joined
Feb 20, 2007
Messages
355
Diagnosis
02/2007
Country
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NJ
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Mays Landing
Hi Zina

My husband had his first ALS clinic appointment and it was very positive and helpful. His ALS Specialist is also the Director of the clinic and is very very good. We will continue with the clinic.

Wish you and your husband the best. And I agree with what you said about ALS.

Praying for a cure!


Patty
 

CindyM

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New England
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Anytown
Hi Zina- here is a simple example of how the local guys handle information: I told my local neuro that I am having shortness of breath and headache and he sent me for a brain scan. Had I told my ALS clinic, I bet they would have ordered a pulmonary function test. The clinic does not look for run-of-the-mill problems. They take it all into consideration within the framework of MND.

So it is off to the clinic for me, but with proof that somewhere inside my head, there lives a brain! :-D
 

MtPockets

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Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
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State
Ms
City
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My family has a running joke about my brain that they got for the young Dr. Frankenstein movie. I have Abby's brain. Abby-Normal, that is.
:-D:-D:-D:-D
 

Vicki S

Active member
Joined
Jan 2, 2008
Messages
32
Reason
PALS
Diagnosis
09/2007
Country
US
State
Alabama
City
Daphne
I'm still with my local neurologist. The clinic I was told to go to had left the hospital where it was at 5 years ago.

I had a visit from the representive for ALSAlabama. She was really informative. She setting a support group about an hour from my house. She told my husband that my bedroom door needs to widened as does my bathroom door. She told that the society would for it. I can't get my husband to do it because he thinks I will be out of the wheel chair in a month. I told him that's not likely as Lithium will not cure my balance issues or fix my drop foot.

Vicki:-D
 

1Mother

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Nov 26, 2007
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Il
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Lake Forest
Hi all, I am also wondering about using the ALSA clinic - here in Chicago its at Univ. of Illinois Hospital. My husband is being evaluated at Northwestern Hospital next month. We can choose the clinic at Univ. of Chicago too. Maybe someone on this site can recommend a clinic for us? I like the idea of multiple disciplines already coordinated for ease of care as in the ALSA recommended clinics. Thank you:)1Mother
 

Mary Helen Barr

Active member
Joined
Mar 6, 2006
Messages
61
My father went to the clinic, because his neurologist in Pittsburgh, PA runs the clinic. We always went every 3 or 4 months, but all my dad really cared about was seeing his neurologist again. We weren't really "into" the visits from all of the other people (nutritionist, social worker, etc), but we didn't have to stay for all those visits. The clinic was a good thing, but what we really liked was that it was another chance to see his neurologist. I don't know that we would have traveled to another city for a clinic appointment, but who knows, maybe we would have.
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Hi Vicki,
You said there was a support group about an hour from your house? I live in Gulfport, Ms. and the group we have here is very small. I have been looking for a larger better formed group. Let me know how this one works out if you go and it's location.
 

nspoc

Distinguished member
Joined
Mar 24, 2007
Messages
113
Reason
CALS
Country
US
State
Illinois
City
Olympia Fields
Hi 1mother -

We go to Northwestern - are particularly happy with the pulmonologist, Dr. Wolfe. They certainly have coordinated services there. I would start by going to the Les Turner ALS Foundation website (www.lesturnerals.org) and getting info on the Northwestern clinic and on the Foundation.

The Foundation offers home visits from nurses, social worker, and consultant on speech devices and environmental controls. They have annual equipment/respite cash grants, they have a great loan closet. But most important to me - tremendously helpful and knowledgable staff. You can get help from them even if you are a member of ALSA and MDA (I recommend signing up for both because of the grants and equipment they may be able to provide).

We are lucky in Chicago to have something as comprehensive as the Les Turner Foundation. You are eligible for their services even if you go to U of I or University of Chicago. By all means - go to one of their support groups - we share equipment, info and great support (not a pity party by any means). We have met U of C. and U. of I. patients there.

Please keep writing - or PM me. I have been on this journey in Chicago for three years with my best friend and together we have learned a lot.

Best of luck! Beth
 
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