Old 07-18-2009, 01:22 AM #1 (permalink)
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Question A daughter with questions.

Hi there,

I'm a sixteen-year-old girl from New Zealand, and my mother was sort of half-heartedly diagnosed with PMA sometime in the past two years. She has been suffering symptoms for roughly 3+ years, namely the foot drop, weakness, cramping, etc. She knows in far more detail when things started happening and what, it's all been a blur for me. Anyway. It has progressed quite far, and she is completely wheelchair-bound now. She has a mobility scooter at school (she's a secondary-school teacher) and a motorised, smaller "Go-Chair" at home, both of which are blessings considering that they allow her to continue working full-time. She uses transfer boards and we've got a lift installed so that her chair can go in and out of the house.

Her legs are pretty severely atrophied, calves and thighs. She cannot stand. The atrophy has spread to her hands and she now has flat palms and you can see there is little or no muscle between the fingers, meaning she has limited dexterity now, and struggles with fine-motor skills.

Basically I wanted to talk here because reading about these conditions online can be so terrifying, and they are couched in such clinical, brutal terms. I have had very few conversations about the details of Mum's particular illness with my parents, I actually really just don't want to bring it up, as what I can see tells me enough.

But I have a lot of questions. I have a lot of fear and dread about what is yet to happen. Part of me wants to escape it, because it's devastating to see my mother deteriorate. I also have selfish questions which are hard to find the answers to, surrounding the hereditary nature of these conditions. Can you tell me some more about that?

Also I've noticed that if she coughs it has become weak-sounding, and that strikes me as being related to the PMA as it's fairly recent. Could I get more information on that? I'm terrified that it means it's spreading to her throat.

So yeah . . . I'm glad to have found some people who actually know what they're talking about here. I feel that I've painted a picture of my mother as a weak victim but she is a trooper and her incredible bravery and strength is something I have to mention. My dad is a hero, he is so devoted and loving and he takes care of Mum amazingly. So I have a lot to be grateful for. I see that.

Thank you, and I look forward to your responses,

Katie.
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Old 07-18-2009, 08:23 AM #2 (permalink)
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Katie, welcome to the forum but I am so sorry about why you had to come looking for us. Let me first say that your post really touched me and I am sitting here stunned that you are only 16! You are so articulate, emotionally mature and self-aware. Wow! I am totally impressed by you.

While I can't answer all of your questions with medical accuracy, I can offer you my support and tell you that I totally understand how devastating it feels to see one of your parents deteriorate physically and yet be in such awe of their bravery and strength. It seems like a contradiction, when as a family, you are facing something so difficult and negative and yet it gives you the opportunity to see your family members at their absolute best. The trick is to focus on those special moments and make happy memories with your Mum because she could very well be around for many years to come. The statistics for survival are pretty old and many many patients beat the odds. With your parents' attitudes, your mother is on the right path to beating the statistics. The fact that she is still working and obviously overcoming her limitations is the best medicine for her and having you and your father by her side is a winning combination. You sound like such a great family.

As for the hereditary nature of MND's I can reassure you that it is very rare. Do you know of any other family members on your mother's side who have this disease or have had the disease in past generations? If not, then I think you can pretty much rule out the hereditary strain of MND.

Keep asking questions and venting here as much as you need to, Katie. That's what we're her for and you will discover that some of the people on this forum are among the wisest and most amazing human beings you will ever "meet." You came to the right place.
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Old 07-18-2009, 09:45 AM #3 (permalink)
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Katie,

My sweet daughter is a Katie and so I ♥ your name! I want to second what Thelma wrote - she said it so well. You are a remarkable young lady.

When my Dad was diagnosed with ALS I was devastated and I am much older than you. The research and articles I read were full of gloom and doom but learning from other PALS and CALS like the ones on this forum gave me hope and knowledge to help my Dad manage living with ALS.

You have many questions that I can't answer. I can tell you that I have accepted that I can't control this disease or even predict what is next but I can help both my parents with the day to day aspect of living life and loving each other as a family. I think it is only natural to wonder/worry about the genetics and what it means for ourselves. The percentage is very small and like the questions Thelma asked you, I went back through my Dad's history and found no one else with similar problems.

Your Mom is a remarkable woman. I admire her strength and determination to continue to teach when faced with such challenges. I imagine she has instilled that same strength in you. You described both parents so lovingly that I imagine they would want to answer questions and talk with you about your fears.

I am so sorry for the reason you are here but welcome. This forum is a great place to obtain information and support.
Dana
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Old 07-18-2009, 03:53 PM #4 (permalink)
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Just wanted to say hi and welcome Katie.

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Old 07-18-2009, 11:39 PM #5 (permalink)
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Hi, Katie!

I'm sorry to hear about your mum and the PMA. She sounds like a remarkable lady with an equally remarkable daughter.

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Old 07-19-2009, 09:07 PM #6 (permalink)
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Thank you very much for that welcome. My parents have coped with each obstacle amazingly and they continue to find ways to solve all the problems presented by Mum's illness, so I guess that really is the best way to go about this.

I'm pretty certain that no-one else in the family has had this kind of condition.

I definitely will ask questions. Thanks. I really appreciate it!
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Old 07-19-2009, 09:10 PM #7 (permalink)
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Actually, one question already. Mum gets feelings in her legs which she describes as "electric shocks" and the skin is really sensitive and raw-feeling. She thinks this is all to do with the nerve damage. Are there any medications for this kind of thing? She was trying something called Norpress 10 but it served to make her mind race and didn't help at all with sleeping or nerve pain, don't know if that's helpful.

Should I post this query somewhere else?
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Old 07-19-2009, 10:33 PM #8 (permalink)
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Hi Katie,

There are other medicines that might help. Have your mum inquire with her doctors. That is what they are there for. Gabapentin is one brand name. How are you doing? Are you hanging in there? The man I take care of and love very much has ALS. His daughter will be 16 in September. Somewhere on here you will find information about an online support group for teens with parents of this horrid disease. It's based out of Canada. Andy's daughter really doesn't get on there much, but I wanted you to know that you could probably google it. Jessica, my PALS daughter, has been dealing with her dad's disease since 2001. Let me know if you would like to chat with her sometime. Easy if you have a myspace. Blessings, Pam
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Old 07-19-2009, 11:44 PM #9 (permalink)
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Here is the link for the ALS Society of Canada's kids and teen support site.

http://www.als411.ca/

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Old 07-20-2009, 03:21 PM #10 (permalink)
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Katie,
My son is 14 and I am sure he would love to get to know you. I think anyone that has a teenager or pre-teen on here could share addresses if any of the teen's are interested, these guys and gals love to communicate through technology, the ability for these guys to get to know each other sure has been helped with the tech stuff they have now.
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