Need Help/Suggestions Please

[Guest guest]

Hi all,

I know I have been quiet on here lately as many topics I

can't relate to yet. But this past weekend I had my first

major " crash " . It was so bad that I could barely walk and

I am still pretty physically fit (walk 1-3 mi. or swim at least

3-5 times a week). So I was quite shocked that this

happened. I know things have been regressing quite

rapidly lately for my body but wasn't sure how to slow or

stop it. I saw Dr. Gropman this summer in DC and she wants

more testing so I don't have a whole lot of answers yet. I have

been trying to reach the doc this week but we have played phone tag.

I am on a few things with the cocktail (coQ, carnitor, b vit. and

lypoic acid).

I wasn't sure if I needed to increase these during a crash, I know

I have to sleep and I have been 12-20 hours a day for the past

4 days....and feeling somewhat better, just not anywhere near

normal. How long does it take to recuperate? What else can

I do to help my body ? I guess one of the fears is that I will

continue to decline so rapidly that I will lose my mobility

in the near future and my independence with it. The biggest

fear is the thought of this being terminal and becuz things are

deteriorating so rapidly .... how much longer will I have left?

I am really struggling now to keep my DH calm and reassure

him things are going to be OK... but I am having a hard time

believing it myself. You all have been so supportive and

informative this past year since Joe was diagnosed. I don't

know what I would do without you all.

Thanks again for everything,

<>AnnMarie L. - Complex IV

Married to my best friend Rick, Mom of (15), (12), Cassandra

(6) and

Joe (4 1/2) - complex IV, lactic acidosis, CP,tethered chord syndrome,

dysautonomia, and

a smile that never quits ?

[Guest guest]

Ann Marie

I usually increase my CoQ during a crash and sleep, but with the alarm set

to get up and push fluids and eat. I usually drink Gatorade when in a crash,

but not when I'm not.

I understand your fear and questions. I have regressed over the years and am

less able to do much without my wheelchair, but I do recover from crashes. I

try to catch a crash at the beginning, which helps. That was impossible when

you hadn't had the experience before.

Mito can be terminal, but more in children than adults. You may have to make

some life style changes to prevent this from happening again. Staying cool

when it is hot outside is a must for me to recover from a crash.

Thinking of you.

Hugs,

laurie

>

> Reply-To:

> Date: Wed, 18 Aug 2004 12:21:13 -0500

> To: Mito Mito >, Mitoldies >

> Subject: Need Help/Suggestions Please

>

> Hi all,

> I know I have been quiet on here lately as many topics I

> can't relate to yet. But this past weekend I had my first

> major " crash " . It was so bad that I could barely walk and

> I am still pretty physically fit (walk 1-3 mi. or swim at least

> 3-5 times a week). So I was quite shocked that this

> happened. I know things have been regressing quite

> rapidly lately for my body but wasn't sure how to slow or

> stop it. I saw Dr. Gropman this summer in DC and she wants

> more testing so I don't have a whole lot of answers yet. I have

> been trying to reach the doc this week but we have played phone tag.

> I am on a few things with the cocktail (coQ, carnitor, b vit. and

> lypoic acid).

> I wasn't sure if I needed to increase these during a crash, I know

> I have to sleep and I have been 12-20 hours a day for the past

> 4 days....and feeling somewhat better, just not anywhere near

> normal. How long does it take to recuperate? What else can

> I do to help my body ? I guess one of the fears is that I will

> continue to decline so rapidly that I will lose my mobility

> in the near future and my independence with it. The biggest

> fear is the thought of this being terminal and becuz things are

> deteriorating so rapidly .... how much longer will I have left?

> I am really struggling now to keep my DH calm and reassure

> him things are going to be OK... but I am having a hard time

> believing it myself. You all have been so supportive and

> informative this past year since Joe was diagnosed. I don't

> know what I would do without you all.

> Thanks again for everything,

> <>AnnMarie L. - Complex IV

> Married to my best friend Rick, Mom of (15), (12), Cassandra

> (6) and

> Joe (4 1/2) - complex IV, lactic acidosis, CP,tethered chord syndrome,

> dysautonomia, and

> a smile that never quits ?

>

>

>