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mommaof4

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Friend was DX
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Washington
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The Woods
I just recieved word from my best friend that she has been diagnosed with PBP. It has taken quite a bit of time to come up with this diagnosis. She has been run through test after test and seen specialist after specialist. I am not sure what to do now? She is a 30 year old mom of 3 kids (they are 5 and under). I am having trouble finding any definite answers to what happens now?
She has been having trouble talking for about a year now...sounded like she was "stuffy" or had gotten a new retainer. When we spoke last it was much harder to understand some of what she said and she had to repeat herself. Her husband and I were the only ones that didn't hear a big difference in her speech, and I am really concerned because I can hear what others have been talking about now.
Not sure how to ask this, but I can't find answers anywhere and I don't think this is the best time to bombard her with questions. What is the life expectancy with PBP?

Thanks to anyone who takes the time to read this and is willing to pass some information on.
 
Well, if you believe what you read online, the prognosis is 2-3 years after diagnosis. But Don't believe everything you read. Every case is different and there are no concrete answers. Beth and Rose may be able to give you their stories. I hope they see this.
I was diagnosed in Jan with PBP, but looking back I have had symptoms for at least 18 months previous to that. I began with speech slurring and some difficulty swallowing. I too, have to repeat myself. I have an IPhone and a computer that I can type and it will speak for me. I am still working full time and just starting to have problems eating. It is getting difficult and soon I will ge the peg for feeding. I have noticed my pulmonary function getting lower but there are things to do.
I don't know if your friend has any limb involvement but I do not yet have any. Dr. says i am a slow progressor. But you know how fast time flies.
I don't have any words of wisdom other than, support your friend and stay close. Give her a safe place to cry or just dump her feelings on. She will be going up and down and then back around for awhile. It is a very hard thing to hear and to accept.
She has a lot to live for and I know that having purpose is important.
Has she gone to an ALS clinic?
I am sorry for your freind's diagnosis, but I am sure she is lucky to have you around.
NancyS
 
Hi Momma,

Wow , you seem to be one of those special friends. Welcome to the site.

The truth about life expectancy is : Its only an average . No one really knows.

Its all about positive attitude , maintaining your weight and your energy levels.

I believe as others that you need to be pro-active in determining your needs. ie: Peg , mobility devices (walkers/chairs) and communicating.

Look into the nearest ALS Clinic/Rehab Center . Also , look into what services are available that can help your friend. Its never too early to get signed up for these services.

Glen
 
Oh I'm so sorry to hear this. I am a mother of 3 myself (my mother has the disease, not me) and I simply cannot imagine the emotional trauma she must be going through.

I think everyone approaches a terminal illness differently. My Dad had pancreatic cancer, diagnosed a few years ago. He fought it well and with great dignity, but at the same time he prepared himself and his friends and family for his death by organising his affairs, writing down some instructions for after he died and so on. My mother is different. She is in despair over her prognosis, and may remain that way to the end, whenever that may be. Neither way is "right" and I don't think it helps to tell someone to "snap out of it" or to be unselfish.

I know a woman who died from cancer a few months ago. She had 3 children aged 6-11. She and her husband agreed not to tell the children until the very end that she was going to die. They only learned about it the day before she died. They knew she was sick, but not how very sick. Her reasoning was that she didn't want them constantly asking her about "when will it happen." She wanted them to have parental security until the very end. I don't know if that's what I would do, and something felt wrong about it to me, but it was what she did after a lot of soul-searching and discussions with psychologists.

I guess what I'm saying is that your friend will need to find a way to deal with both the illness (the changes in her abilities) and she'll also need to find a way to deal with the fact that this illness has a poor prognosis. And as her friend you can support whatever approach she takes to that, even if you think it is "wrong" in some way.

As for dealing with the actual illness - fatigue is a big factor in this disease. Picking up her kids from school or taking them to birthday parties or sports on weekends so that she can take a nap is something that her friends can do for her. Also helping her to research some of the devices and facilities that are available so that she doesn't have to do the running around looking into software, devices and so on . . . if she's fatigued then her energy can be directed towards her family and towards making decisions based on research done by someone else, not in the legwork and phone calls.

You're obviously a good friend to be looking for ways to help. It's tragic for you to have a best friend who may not be around for the long term, and perhaps you need someone to talk to as well. We had a doctor tell us that any of us could die at any moment, and he's right of course, but it wasn't actually a helpful comment, keeping our heads in the sand about that is what keeps us all going! Stay fit and healthy for your friend so that you can support her as well as look after your own family. Hopefully she will have a supportive spouse too.

sesl
 
Thanks so much for the quick responses. I have actually spoken with her this morning (she told us all the news yesterday via text since she was not ready to talk to anyone right after diagnosis)! I have been able to pass along some info and ideas to her. I am glad that I jumped on the research train so quickly and that I was able to offer her something other than the "I'm so sorry" response. She lives 12 hours away from her family and closest friends, so we are limited in our support (at this point). She does live 20 minutes from her in-laws so they can help out some, but I am hopeful that they will decide to come home.
She has a positive outlook as of today. She knows that being angry and dwelling will not "fix" anything. She realizes that as things progress she will experience these feelings but is preparing for that. She also asked about sign language as her speech is already deteriorated quite a bit. I thought it was a great idea for her, especially because at this point she has no limb involvement. I am so proud of her already!
Thanks for the info on the clinics/rehab centers. I did suggest them to her. Does anyone know about getting help financially for medications and other devices which will be needed in the future? Can these centers help her with that type of info? Since we are just starting this journey any and all thoughts, advice, and bits of wisdom are so appreciated.
Thanks again!
 
Momma,
Welcome to are corner of the world. I am in aggreement with my friend's here, you are one of the friends that everyone needs. I think the advice to take on some things for your friend like picking up the kid's, dropping them off. Making dinners , helping with cleaning. I think that maybe if you got togetrher some of your friends and took different things to help with. MDA and ALSA will help with equipment, and such. We hpe we can provice help, to help you with your friend. I hate when this darn stuff hit's young parent's. My son is 14 and that is young enough. But under 5, oh my gosh, so sad. Thank you for caring so much.
 
Such good advice and wisdom had been offered already! I JUST HATE THIS DISEASE! She needs to apply asap for SSDI if she is elgible. Is she able to go to an ALS Clinic? Does she have a living will and guardianship paperwork for the children? My suggestion is this, follow the excellent advice already given, take care of what she can for the future NOW and then just live every moment. You are a true blessing in her life.
 
She is a stay at home momma so is SSDI even an option? As far as an ASL clinic, there appear to be none in her state....I have been checking. There aren't even any support groups anywhere near her. She got her diagnosed from a specialist in Utah, but they are too far away for that to be her homebase, and money is tight (and getting tighter). We are all hopeful that they will move back here, and if they do there are many support groups, centers, and certified clinics in our area.
As far as a living will and the kids are concerned, we have yet to talk about those things. Although we have the type of relationship where we are completely open and don't mince words, I thought that she needed some time before talking about these types of things. Her mom is flying to see her this weekend and they may cover some of these topics then. She is bringing some info for her that her sister and I have recieved from the wonderful folks here, as well as things we found from websites that have been suggested.
Thanks again, everything is so very much appreciated!

~Momma
 
Just booked plane tickets to go see my friend in early December! Very excited to go visit, see her and her family, and just spend time together. :D She is apprecaitive of all the info and she is researching "what next" and seems to be getting a much better understanding of things.
Momma
 
so sorry about your friend...tell her she is not alone.....and there are even strangers praying for her and her family......
 
My husband has found that intensive exercise, both aerobic and weight lifting, makes him feel much better. He exercises at least three hours a day. There is a great deal of new research on exercise and the brain....As he puts it, it is the only thing that makes him feel "whole." Other than that taking anti-depressants have really helped a lot. Not a cure but he may be on to something I have not yet seen on this site.
 
Wow he exercises 3 hours a day? I would be happy with 3 minutes.l:razz: In all seriousness that is not something I have ever heard anyone say with these assortment of diseases.
 
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