mito and relating to people

Rachel, Thank you for sharing so many details. It is such a help. My son Anthony just started talking and I don't always know the right answers. Have you tried any kind of exercise program to try and help with fatigue? Anthony is in therapy and sometimes it is hard to tell if it helps him or just makes him more fatigued.

Having lots of kids with lots of difficulties and being disabled myself we often get lots of stares. I am sometimes so Evil!!!! If a child walks into something or trips over cause his head is screwed round the wrong way staring at on of our kids I laugh unmercifully...I want to tell him how much her brightened my day! lol We were once causing a bit of an obstruction parking in the car partk of a large supermarket...we have a huge minibus with a tail lift and getting the girls out in their chairs and then Jonathan's chair and all the O2 Feed pumps Suction and everything else we carry around with us...takes a few minutes. One driver got really impatient waiting for us and started tooting his horn and gesticulating. I politely walked up to his window to ask if he was trying to tell me something...sweet smile pasted on my face...He was so angry saying will you hurry up you are blocking the way! I smiled sweetly again and said I am so sorry that our complex family life is impeding yours for just a few minutes! And walked away. He sat there looking quite bemused as I continued to unload and then pack the lift away and close the door. I waved in a friendly manner as he went by! Other times though I am not so polite or friendly or jolly. I have been reduced to tears by other peoples rudeness, I have to myt shame been rude back...I suppose my most frequent response is usually sarcasm though....isnt that the lowest form of wit? Sometimes though we just have fun....appologising for being always in the way...telling people as a side not we have a degree in being in the way we are so good at it...picture us in the supermarket...usually two trolleys, three wheelchairs, two adults 5 kids....we make an efficient road block! Usually Rosie escapes at some point and either unstacks the shelves as we go or lays across the floor making an ideal trip hazard! Even more effective when someone with tied shoes stops near enough for her to undo their shoelaces! Usually she is chewing the shoe lace by the time the person moves and then you just have to hope they had a sense of humour...although most have found one by the time they go! We do meet tutters and moaners and those with an oppinion best kept to themselves but which they love to share with us....my ten year old is great...she will go up and stand virtually on a persons toes and look them in the eye and smile sweetly saying..."Excuse me please" that was the words you were looking for! Or if Rosie has thrown something at someone then she will say...dont worry it was only Rosie you've just been Rosied! That one worked quite well to break the icey atmospherre when Rosie threw a handful of prechewed chip at a lady in Macdonalds once! A sense of humour and thick skin are essential in our life! Hugs

Anthonys mom, I'm glad you brought up exercise! Janice sent me an exercise guide from Vancouver Coastal Health. It's amazing! I've had physical therapy before, but no one who knew anything about mito. The guide explained how to know when I need to stop, and had modifications to exercises if you're prone to splatting. After just a few days I do think my energy is better. Even bigger, I walked yesterday for two minutes straight. I'm almost in tears as I type this. I had pretty much given up being able to walk a minute, much less two! Tina, I'm sure there are days when it would be nice to blend in, but boy, I would love to come visit you! I got such a giggle picturing Rosie chewing shoelaces! Pity I live so far away! Keep on laughing!

If you would really like a laugh at our expense please read my blog from one day last September...excuse the awful typing errors I was terribly tired by the time I blogged I hope you can make sense! hugs http://lifeinourhouse-tina.blogspot.com/2008/09/public-scrutiny-cdls-blo...

Is there anyway that I can get a copy of the Vancouver coastal Health exercise guide. We are need of something new to try with Anthony.

I am working on permission for the Mitoaction.org to copy and distribute this helpful guide.

Sorry Janice! I really liked the guide, and I just can't keep something helpful to myself! I too was thinking it would be great if mitoaction could help in sharing this. I just think most physical therapists don't know how do help us. They want to help, they just don't know how. By the way, your handwriting is just lovely! I left the package on the floor a bit after opening it and two people commented that they had never seen an address written so nicely!

Janice, How did you recieve the guide? Were you seeing someone at the clinic? We had meet a lady last year who was doing a study on exercise in Canada and she was seeing great results with Adults. Did they come out with the guide? I think her name was Tanja? I am so excited I hope the information will be passed along. I always hope we will find something that will help with Anthony's Quality of life.

Hi, yes it is handed out in a folder of info we are given when diagnosed. I e-mailed them today regarding the guide. I was thinking it could be printed off from the Mitoaction.org site directly. ( That is my hope anyway.)This way everyone can have access to it. We'll make sure that you get one iether way! It would be good for all the physiotherapists to have a copy of also. * note to Rachel..Ha! Sharing helpful info is what it is all about! never be sorry. The writing is good for the first paragraph anyway, then look out. Do you know how many letters and reports ect. i ripped up because my writing got sloppier as i went along, all those years in school? Trying to get it consistant? If i had only known it wasn't going to get better, that it was mito weakness, i wouldn't of had to of re-write them soooo many times! Ha Now thats a waste of energy!

Have posted comments in the last week but they do not show up on the forum. Am I doing something wrong? How do all of you handle depression? Today, lately, things have been going better, but I still have the daily morning depression. Any suggestions? I have Melas, entire family recently (Dec-Feb.) diagnosed. Thanks

Thanks so much Kristen.  Your comments helped me today.  I finally got going and did a lot of housework I'd been putting off.  Sure do appreciate the help.  Some days I'm overwhelmed with responsibility of helping my family with symptoms.  It is so wonderful to be on this forum where others have similar problem, and understand feelings.

Will post again for more help.

Carollind