Hi donnah we are neighbors

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Beebe

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new jersey
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forked river
Hi there, Interesting we live in Forked River. Haven't seen anyone on the Forum that lived this close. My son-in-law Jack has ALS. He was diagnosed in April of 2006. Hope to hear from you. Where was your husband diagnosed? My Best to you , Beebe
 

Beebe

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Messages
319
Diagnosis
4/2006
Country
oce
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new jersey
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forked river
Hi Donna, I just went back and read your posts. Did your Husband come home from the hospital yet? I can understand what you are going thru. My daughter works and wonders all the time what is going on at home. At least my other daughter and I are only 5 min. away. So we check up on Jack every day. Try to find places to go to get him out of the house too. The big kid will play video games most of the day!Jack's 42. Hope to hear from you. My very best to you, Beebe
 

donnah

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CALS
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City
Barnegat
Hi Beebe
Yes we are . Yes he is home but we are having a hard time of it. He is having breathing problems at night and I am having a hard time trying to find some help with him during the day.Thank God I have friends in from Florida and more coming next week, but after that I am scared His nurse said I could have a service for about $600.00 per week. Any ideals would be great . How do you handle this I dont sleep at night just so I can be sure he is not choking. The last 2 night he woke with shortness of breath. He said he will let me know if he wants to go to the hospital or not. I'm afraid I'll not understand his sign. Any suggestions would be helpfull I'll keep you posted.
 

Beebe

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4/2006
Country
oce
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new jersey
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forked river
Hi Donna, Have you been in touch with the ALS association ? There is a nurse case manager for our area. She has visited with my son-in-law and keeps in touch with my daughter. She would be a big help to you as they do have volunteers and help for what ever you need. Please get back to me. My best to you , Beebe
 

gifogif

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Barnegat
Hi Beebe & Donnah

Hi Beebe & Donnah. Just wanted to let you know that you are not alone in South Jersey. I also live in Barnegat and was diagnosed in January of '05. I receive a lot of assistance/advice from the ALS clinic in Tinton Falls. They have a wide variety of specialists with expertise in ALS. They are located within the Health South facility. Great people.I suggest giving them a call , it can't hurt. Remember--STAY POSITIVE
 

Beebe

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Hi Donna, Here is the info Pat Schaeffer the nurse said to call her at 732-450-2677 . She will get you the help you need. Also there is a new support group she's with at Riverview Med. Center first Tues. of the month at 6:30 pm. There was a big article in the Sunday Asbury Park Press about the new Group. Keep in touch. Fondly, Beebe
 

Beebe

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4/2006
Country
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new jersey
City
forked river
Hi gifogif, I don't know your name. You aren't on the member's list. Where abouts in Barnegat do you live? I have someone I care for at The Mirage been with the family for 6yrs. My extended family! We'll keep in touch . How are you doing? It's my son-in-law Jack that has ALS. We are all in this together..... My Best to you Beebe
 

gifogif

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Messages
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Reason
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Barnegat
Hi Beebe--I live next door in Pheasant Run. Moved there about a month ago.My wife and I have lived in Barnegat for 32 years but had a bi-level and had to buy a ranch. My symptoms began in early '03. I went to the doc in '04 and was finally diagnosed at John Hopkins in Jan.'05. Mine is leg onset and by now I do very little walking. I use both a scooter and electric wheelchair. Luckily I was able to get a handicap van. So far I feel very fortunate since while I have weakness in my upper body and arms I do not have any respiratory issues.I am still able to do some work and keep busy. I also have a great caretaker in my wife,Mary. You can be assured that even though you may not think you are appreciated at times believe me you are. Any help or advice I can provide, just ask. Best Wishes
 

Beebe

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Diagnosis
4/2006
Country
oce
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City
forked river
Hi, We have lived in Forked River for 26yrs. We are off Lakeside Drive South by the Lakes. It has changed quite a bit hasn't it. It isn't quiet anymore. What do you do with yourself on a daily basis? Jack was diagnosed April of 2006. He's 42. Was a contractor. Started with weakness in fingers and arms left side more so, fascilations too. Then went to legs. He's still walking around. You are right about thinking Positive, we have to. One day at a time. My daughter says the power plant is not helping us. We are only a mile away. What kind of work do you do? Have a good night. We'll keep in touch. My Best to you, Beebe
 

gifogif

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Messages
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Reason
PALS
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Barnegat
Good Morning-- My entire career was spent in hospital administration.I retired back in '99 but then because of the Stock Market crash and complete boredom decided to find something around here instead of going back to commuting.Luckily an opening came up at St. Mary's. So here I am as the Business Administrator since'02. I can't work full time nor can I attend all meetings or events as I once did but Fr. Ken has been more than accomodating. Other than that I watch TV and cook mostly on the weekends with the help of my wife. She's my gofer. My passion was golf but that ended about 1 1/2 years ago. I guess we all have to adapt and find new pleasures and interests as circumstances dictate. My best to your PALS and always remember you are appreciated
 

Beebe

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Joined
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Messages
319
Diagnosis
4/2006
Country
oce
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City
forked river
Hi gifogif, My friends in Barnegat belong to St. Mary's. The Deacon use to come once a week and bring Communion for Mary and Jim. Mary passed away September of 2005 she was 89. We attended a mass for her Sept. 19th. of this year. Father Ken is a wonderful person. Do you belong to any support group? We didn't know Health South had an ALS program? Jack was going to Health South in Toms River for water Therapy only one with a pool.. They closed it last month. They joined a club in Manahawkin which actually works out better they both can go and it 's less than what the copay was. Well that's it for now. My best to you, Beebe Donna hasn't checked the post yet......
 

donnah

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Aug 18, 2006
Messages
54
Reason
CALS
Country
US
State
New Jersey
City
Barnegat
Hi Beebe & Gifogif I try to read the forum from the two of you every day. Its comforting to know that the two of you are so close by. I'm having trouble getting it together. I have put a call into Pat from the clinic you suggested. Scheduling people is the hardest. I have one more week to get it together before all my help goes home. I feel lost. If you read the paper a few weeks ago, my husband & I were the ones whos outdoor lift snapped and fell. I wish he had the mobility he had before the accident. Well its comforting to know that you two are close by. Maybe coffee sometime and you two could give me some pointers I could use it. I'll let you know what Pat Schaeffer has to say.
Thanks for your support & friendship

Donna
 

donnah

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Messages
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Reason
CALS
Country
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New Jersey
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Barnegat
WHere is the ALS clinic in Tinton Falls? I cant seem to find any information on it. Thanks for the help
 

Beebe

Distinguished member
Joined
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Messages
319
Diagnosis
4/2006
Country
oce
State
new jersey
City
forked river
Hi Donna, You spoke to Pat? My daughter had emailed her about your situation. I hope she can make a visit to you very soon. I can understand your frustrations. Was the article about the lift accident in the Asbury Park Press? I get the paper on Sunday only. That must have been a horrible experience ! Just know we are here for you. Fondly, Beebe
 

donnah

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Joined
Aug 18, 2006
Messages
54
Reason
CALS
Country
US
State
New Jersey
City
Barnegat
Hi BeeBe no I have not spoken to Pat yet. I left 2 voice mails for her I hope she retuns my call today. The artical was in the Atlanic City Press. So any wat what kind of assistance do you recieve from the Clinic so far I have come up empty handed. Well for now all I can do is wait for her call
Talk with you soon
Donna
 
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