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sherry0459

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Hi, my name is Sherry and I was diagnosed March 6, 2007. My symptoms started 1 1/2 yrs. earlier. From what I have read so far this was not as long as some of you. I am from Alabama, so you can imagine my southern drawl and PBP. I need some advice about the quality and ability of life on the feeding tube as well as vent. I am trying to find the right way to plan my advanced directive (living will). Having this forum is a God sent blessing for me. Thank you in advance for your replies.:) sherry0459
 

CindyM

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Hi Sherry-welcome to the fourm! You'll find a lot of good information through the search feature at the top of this screen, and or course lots of PALS and CALS to offer support and practical advice. I see your DX is recent. How are you holding up? Jump in with questions or comments when you feel the need.regards, Cindy
 

sherry0459

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CindyM

Hi, Thanks for the quick reply. Currently I have what I see as moderate progression. Coughing, choking shortness of breath, and I am tired for no reason. Not sure why the tiredness, maybe it is something I wasn't aware of as a symptom or the Rx or the lung weakness. I see the Dr on the 30th. I hope he has more answers now that I have more questions. I was totally unaware of PBP when diagnosed. He has been great to get back to me on the phone for quick answers but I am looking forward to seeing him in person again. He is at UAB in Birmingham AL. an hour and half drive one way so I am making my list of questions now. Are you a patient or supporter of a loved one. It doesn't matter I guess if someone you love has PBP or ALS, you have it too. sherry0459
 

brooksea

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Hey Sherry!

I'm your neighbor in Georgia. I, too would be interested in this thread, as my husband is wrestling with these issues. He also has problems with his speech. Talk about really dragging a syllable on and on!

Look forward to hearing from you.

CJ
 

CindyM

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Hi Sherry- I'm in my own category, it seems. I have something neuro-muscular that started off with great speed but has remained the same for six months. It is to early to show up on emgs and the like. I've made a few life-style adjustments and am being busy feeling grateful. I see minor changes -slightly more cramping, too weak for the active lifestye I used to enjoy, and sometimes I get double vision and slurred speech but nothing that interfers with my life so I don't care. Oh, and I miss things like a good steak or a nice sub sandwhich, but in the grand scheme of things this is minor.

Today my local neurologist and I decided to book the next appointment for six months, but I had to promise him I'd call if things get worse. I said I would but I haven't defined for myself at what point will I need to be before reaching for the phone. The ALs clinic is taking a "wait and see" attitude also.

I am grateful to everyone here for the support and for something else. I doubt I'd be able to keep a sense of perspective without reading the personal experiences of folks like Al and MT and Quadbliss. It has taught me not to worry about the future, and it makes me realize how lucky I am right now. regards, Cindy
 

FORMYMOTHERRIP

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some advice

sherry0459 said:
Hi, my name is Sherry and I was diagnosed March 6, 2007. My symptoms started 1 1/2 yrs. earlier. From what I have read so far this was not as long as some of you. I am from Alabama, so you can imagine my southern drawl and PBP. I need some advice about the quality and ability of life on the feeding tube as well as vent. I am trying to find the right way to plan my advanced directive (living will). Having this forum is a God sent blessing for me. Thank you in advance for your replies.:) sherry0459

Hi Sherry,

First off let me say, I hope for the best for you and your family. I will keep you in my prayers.

I would suggest getting your Living Will, Last Will and Testament, Power of Attorney, and Appointment of Health Care Agent paperwork all done now. I had this paperwork done on both my parents. I also have them on hand if you would like to see them.
email me or give me your email and I will send them to you if you would like.



My Mother recently passed away from a 12 year battle with ALS. If you have any other questions please let me know.

Thank You

Bill
 

munozg

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Bulbar onset

My Dad has a dianosis of PBP with a question mark, and given two years prognosis. His neuro sent him to another neuro this week.
He has been slurring his speech - it is very intermittment, bad some days, not there other days. This has been going on for about 12 months. He has shortness of breath at times suddenly and he panics, and swallowing difficulty going on for about 12-18months. Sometimes he finds it hard to clear his throat. He has had two choking episodes in the past year (on food). A few muscle cramps, a little weaker than in the past. He is 70, so some of this could be age related, and the slurred speech is worse when he has alcohol. He is still working on the farm, at a slower pace of course. He does have some atrophy of muscles.
Cheers, Mel
 

sherry0459

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Hi jimercat, First let me say thanks for your reply. I hope to get some answers to the advanced directive on the 30th from my doctor. The will and power of attorney have been signed and children and wonderful hubby know what I want but the legal mumbo jumbo is confusing if you do not know what the quality of life is once you get there. My Dr. will not give me a prognosis so I am unsure what to prepare for. He says two out of ten get to a point where they stay the same for years. Of course those are not good betting odds. And as I have researched I see some web articles that scare the wits out of me. Some say PBP is the onset of ALS. Some say it was thought to be part of ALS and now can be just PBP with no ALS. Sorry this is long, but does anyone have thoughts on that. Thanks, sherry0459
 

sherry0459

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Thanks Bill, Sorry to hear about your Mom. But from the sound of your sweet and informative thread she was blessed while she was with you. The will and all else is taken care of. My main problem is deciding about quality of life matters. I have a wonderful hubby, great children and the light of my light grandchild. There will come a time when I want them to remember me before PBP. If you do not mind me asking did your Mom have PBP onset or did occur later? My prayers are with you this Mothers Day. I, too have lost my Mom. She had alzemhiers. Prayers of support to you and yours. sherry0459
 

sherry0459

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Hi Mel, Thanks for your thoughts. My PBP started with speech slurring, then tongue weakness. Of course my diagnosed was not until 18 months later. I choke on liquid most of the time. Even my on saliva. The Dr. gave me meds for that but man They make dry as sand paper sometimes. I find I need more sleep some days and some I can be more active. This probably hasn't help you much but, my thoughts are with you and your family. Hope to hear from you again
 

midwestgirl

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Hi Sherry, My mother was diagnosed with ALS Dec 06, but had symptoms well before. Foot drop diagnosed Nov 05, I first started hearing some slurring of speech March of 06 - I thought maybe her dentures needed aligning. By Dec 06 she was difficult to understand, especially in the evening. I can not talk to her on the phone any longer as I can't understand her. It is very frustrating to her, when I am with her she will write things if I don't understand, but not always. She went from a soft diet to a pureed died, and April 2nd she opted to have a feeding tube placed. It was a good decision, she has more energy now, I could see the difference in her skin - much more hydrated. Although, she does miss not eating food. Eating is not only something physical we do, it is also very social. As far as choking on liquids, you can add "Thick it" which is easier to swallow. Also, mom always drank a lot of chocolate milk and tomato juice - both have a thicker consistency.
Enjoy Mother's Day
 

bucky

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Jan 23, 2007
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Wisconsin
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Poynette
My name is Jim and I was diagnosed with Bubar Palsy in Sept. 06 started in Jan 06, diagnosed with Bulbar onset A.L.S. Feb 07 My speech is completely gone. Eating or drinking even thick liquids results in severe coughing. I am now on a feeding tube since the first week in March. My limbs are still working and I can perform activities of daily living okay. As to the feeding tube, I am glad I made that decision. I miss eating real food and having a beverage, but I certainly don't miss the coughing. Since the feeding tube I am now at a point where I rely on it completely for nutrition. It was sore for a while around the incision. It is fine now. I just returned from a weeks vacation and no problem. I use paper tape, much better than adhesive, and tape it to my stomach and don't even know it is there. Hope this helps.
 

CindyM

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hanks for sharing, Bucky. It is always encouraging to read about people who continue to live life to its fullest. Cindy
 

sherry0459

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03/2007
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US
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Alabama
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Jacksonville
Jim, You have helped me alot. I really do not know what I would do without this site. I am very happy to hear you are doing so well. You encourage me and others like me to keep our eyes up and our fears away. Everyday is a gift to each person. We should cherish them with courage and compassion like you. THANKS! sherry
 
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