What do we do now?

Kariann · 10-20-2009, 04:07 PM

My sister has just been dx with PBP yesterday. I don't know where to get information for myself and her. Right now the only thing that consumes my mind is that she is dying and I don't know how to talk about it. She has 3 little kids and a husband and lives far away from me. She seems to have a great attitude about it so far but she is really good at holding everything inside. A friend of ours is researching clinics and support groups in her area. My question is, what do I do know? Is there a specific book that is helpful and informative? Is there anyone here who has the same thing and is in their 30s like my sister? -big sister

GlenBrittle · 10-20-2009, 04:22 PM

Hi Kariann,

Welcome to the site. First, let me tell you that this site is full of people like you and people with the various forms of MND/ALS/PBP ...

Here is a good place to find the information you are requesting. Welcome - The ALS Association There are a lot of download-able manuals to read. Look under "Patient, Family, Caregiver" .

Feel free to ask your questions here and we will try to answer the best we can. We are not doctors, but we have so much experience that you can get some straight answers or where to go to get them.

Glen

Kariann · 10-20-2009, 07:20 PM

Glen,

Thank you for the site. I have been on it all afternoon. I requested information to be sent to myself and my sister. It feels good to have questions answered. I'm super intimidated but better than before I guess. -Kariann

sesl · 10-21-2009, 03:14 AM

Kariann,

Everything I posted to Mommaof4 in response to her post about her best friend is the same stuff I would post to you.

In fact, I wonder if your sister IS in fact teh best friend of Mommaof4 (now wouldn't that be a coincidence) - two women with 3 young children diagnosed with PBP on the same day . . . does you sister have a good friend living in Washington who has 4 children?

Obviously you can't be part of her daily help team if you live so far away, but you encourage her to ask others around her to help her out. My motherh as PBP and the fatigue is a big issue. Helping her friends to understand that she can't go out all day - she needs to nap in the afternoons - is important. Also my mother is losing the ability to control her face muscles, so she looks kind of scowly and she can't smile. If she's seeing someone for lunch I usually call ahead and let them know that she's going to look grumpy but that's because she can't look any different.

I feel for you and your family, and especially for those little children and their parents.

sesl

myndee11 · 10-21-2009, 09:26 AM

Hi Kariann,
Its me, Mindy, I am sooooo upset and I know you are too, I have found a lot of information on an alternative approach, I have researched all through the night and have contacted my naturalpathic physician, I really feel this is worth trying, all the medical doctors say is that they cant do anything to stop progression. We cannot let her die !!! Im hoping you guys will be open to support her in taking a wholistic approach ? Are you guys planning on going to Idaho ? If so, when? I am in NJ but I am planning a trip and bringing a bunch of info with me. Talk to you soon - Hang in there

Quote:

Originally Posted by Kariann

My sister has just been dx with PBP yesterday. I don't know where to get information for myself and her. Right now the only thing that consumes my mind is that she is dying and I don't know how to talk about it. She has 3 little kids and a husband and lives far away from me. She seems to have a great attitude about it so far but she is really good at holding everything inside. A friend of ours is researching clinics and support groups in her area. My question is, what do I do know? Is there a specific book that is helpful and informative? Is there anyone here who has the same thing and is in their 30s like my sister? -big sister

GlenBrittle · 10-21-2009, 10:07 AM

Ladies,

Please use caution when trying remedies. There is no "official cure" . Generally, if it costs money , do not expect any return on that investment.

Its harsh , but true. You will need the money for the future needs.

Glen

myndee11 · 10-21-2009, 11:30 AM

Oh yes GlenBrittle, I agree we should be careful with anything we chose to put into our bodies! However, Im talking about a wholistic approach, a lifestyle change, feeding your cells, I know that there is no known cure but there are ways to get your body to a healthier state that has been proven to slow down or even stop progression ! and Im not suggesting that anyone should stop their medical treatment. As far as expences are concerned I am willing to purchase and pay for all the alternative treatments for my friend if she is willing to try, I will never give up researching alternative measures, even if it gives her one extra minute. I love her, Thanks for the concern

GlenBrittle · 10-21-2009, 11:41 AM

Hi Myndee,

Your friend is lucky to have you in her time of need.
I am glad you are doing what it takes.

Good Luck. If you find something , let us know.

Glen

lola-pink · 10-21-2009, 12:21 PM

My mother was diagnosed with PBP in December 2007. It is a shocking and soul destroying thing to be told that you have. All I can say that, although you do not know how long you all have together. USE the time - spend the time, laugh, cry and BE together as often as you can. That is what your Sister will want.

Best wishes x

mommaof4 · 10-22-2009, 03:31 PM

Quote:

Originally Posted by sesl

Kariann,

Everything I posted to Mommaof4 in response to her post about her best friend is the same stuff I would post to you.

In fact, I wonder if your sister IS in fact teh best friend of Mommaof4 (now wouldn't that be a coincidence) - two women with 3 young children diagnosed with PBP on the same day . . . does you sister have a good friend living in Washington who has 4 children?

Obviously you can't be part of her daily help team if you live so far away, but you encourage her to ask others around her to help her out. My motherh as PBP and the fatigue is a big issue. Helping her friends to understand that she can't go out all day - she needs to nap in the afternoons - is important. Also my mother is losing the ability to control her face muscles, so she looks kind of scowly and she can't smile. If she's seeing someone for lunch I usually call ahead and let them know that she's going to look grumpy but that's because she can't look any different.

I feel for you and your family, and especially for those little children and their parents.

sesl

Kariann and I are in fact talking about the same person. After coming across this wonderful site and getting such great advice I suggested she head on over! Our girl has a great support system.....if only it were a bit closer to her :/ I am glad that the folks here are so very observant and on top of who is here and needing advice =} Thanks for taking the time with us who are new to this very confusing turn.

sesl · 10-23-2009, 01:32 AM

Kariann and mommaof4,

I'm also pretty new here; my mother was diagnosed only 5 weeks ago. But already I have had heaps of advice from people on these forums. Many have dealt with this disease for years and years and they have so much knowledge.

Good luck to both of you (and Mindee too) supporting you sister and friend.

sesl

Kariann · 10-23-2009, 11:48 AM

Oh my Gosh everybody!
I love you all!
sesl, I am the friend of mommaof4. We live just down the street from each other. Now if we can just get my sister and her family here to be closer to Seattle and support groups. I love the website that Glen referred me to. The information was great and it was presented in a step by step approach. You should check it out too if you haven't already. I'm sorry to hear about your dx as well. Doesn't this suck! I'm angry about it but we are sticking together to do what we can. My mother is taking off today to you visit with my sister.

Myndee, thanks for researching from a wholistic approach. LaRee will be interested in that I'm sure. I'm glad she talked to you. She loves you and she needs everybody's support now.

I want to take lola-pink's advice and be with LaRee. One of her best talents is laughing until she crys. It's so hard to hear others say how it has slowed down their loved ones and that they are tired and have less energy. I cannot imagine my sister slowing down for anything! She makes me tired to be around her with her perfectly clean house, home cooked dinners, and craft projects, clean and happy children, helping friends, and doing church callings. She is super woman!

Thanks for your comments and support everybody. -Kariann