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Board: Muscular Dystrophy 08-13-2013, 04:06 AM
Replies: 3
Views: 1,799
Posted By 2807
Re: Vecttor

Hi boxset
thank you for responding to my post :)
will be thinking of you and your son on the 14th and hopefully you'll let us know how it goes.
All the best
Heidi.
Board: Muscular Dystrophy 07-17-2013, 12:42 AM
Replies: 3
Views: 1,799
Posted By 2807
Vecttor

any one any info on this machine used to treat a variety of conditions MD being one of them?
have googled it and positive and negative comments are to be found.

in my experience not many people...
Board: Muscular Dystrophy 07-13-2013, 04:58 AM
Replies: 0
Views: 850
Posted By 2807
advert

hi guys when I look at this page here there is an advert for stem cell america taking patients now anyone else see that?
Board: Muscular Dystrophy 11-21-2012, 05:47 PM
Replies: 1
Views: 1,135
Posted By 2807
adult stem cells

anyone any info
experience
thoughts
heard of it
pros and cons
anything to add or share?

thank you,
Hx
Board: Muscular Dystrophy 09-27-2012, 06:00 PM
Replies: 3
Views: 1,438
Posted By 2807
weaker

am frustrated


am I feeling weaker and more breathless....... because of my MD or is it because I don't do / move enough?

If I were to DO SOMETHING (not sure what ) would this help me?

I...
Board: Muscular Dystrophy 09-13-2012, 01:32 AM
Replies: 1
Views: 1,467
Posted By 2807
6 minute walk test

Any body out there have to do the 6 minute walk test when you go to see your neurologist or doctor or physio?
If so how do you get on?
Heidi.
Board: Muscular Dystrophy 08-10-2012, 07:18 PM
Replies: 1
Views: 1,053
Posted By 2807
VPAP machine

Anyone else have to wear a VPAP machine of a night to assist with breathing?
Heidi x
Board: Muscular Dystrophy 08-10-2012, 07:16 PM
Replies: 10
Views: 6,259
Posted By 2807
Re: Embarrassed by my disability

yep can relate to all of you.......and like selmaG said we have to live with it........
Heidi x
Board: Muscular Dystrophy 08-04-2012, 07:11 PM
Replies: 9
Limb-girdle Just diagnosed
Views: 2,035
Posted By 2807
Re: Just diagnosed

Just touching base Darla and seeing how things are with you?
I am feeling a bit sad today but am upset with myself for feeling so as it really doesn't help.........maybe I should go and put on some...
Board: Muscular Dystrophy 07-21-2012, 06:35 PM
Replies: 4
Views: 1,564
Posted By 2807
Re: strength in one leg versus another

Mandy am in the same boat as you wondering what is around the corner and how long ...whats next...and no one can tell you anything.....am 42... how long have you been diagnosed?
Board: Muscular Dystrophy 06-13-2012, 04:30 PM
Replies: 14
Views: 2,076
Posted By 2807
Re: Anger/humour?

HAPPY BIRTHDAY
MANDY

thinking of you and hoping you have a great day
Heidi xx
:)
Board: Muscular Dystrophy 06-06-2012, 06:09 PM
Replies: 2
Views: 1,927
Posted By 2807
Re: I can still walk, but I want a wheelchair already.

Hello there SelmaG its Heidi here, unbelievable that over 500 people have looked at your post but no comments so I thought I would..... :)

The feelings you describe about feeling wobbly, stairs,...
Board: Muscular Dystrophy 05-28-2012, 03:47 PM
Replies: 14
Views: 2,076
Posted By 2807
Re: Anger/humour?

in australia so yes we are getting ready for winter too.
Board: Muscular Dystrophy 05-28-2012, 01:43 AM
Replies: 14
Views: 2,076
Posted By 2807
Re: Anger/humour?

where abouts do you live then mandy?
All is well here just trying to stay positive and enjoy each day as it comes.
hx
Board: Muscular Dystrophy 05-25-2012, 03:58 PM
Replies: 14
Views: 2,076
Posted By 2807
Re: Anger/humour?

Mandy thinking of you and wondering how your birthday was? or maybe hasn't been yet?
Heidi. x
Board: Muscular Dystrophy 05-25-2012, 03:56 PM
Replies: 5
Views: 1,972
Posted By 2807
Re: travelling with MD

Thank you Ali76, that must be a very interesting job, I appreciater your response, thanks Heidi
Board: Muscular Dystrophy 05-10-2012, 03:58 AM
Replies: 14
Views: 2,076
Posted By 2807
Re: Anger/humour?

Hi Mandy I was only thinking the other day 'wonder how Mandy'is' then next time I check there you are!!
A big hug to you and Dreaman thats what I'd like to say and thank you for your posts, there is...
Board: Muscular Dystrophy 05-04-2012, 05:06 PM
Replies: 5
Views: 1,972
Posted By 2807
Re: travelling with MD

Thank you for your reply Mark much appreciated.
Heidi
Board: Muscular Dystrophy 05-01-2012, 03:10 AM
Replies: 0
Views: 1,019
Posted By 2807
How you have to think outside the square!!

Home alone doing the dishes a bowl slipped off the draining board little pieces everywhere.....the dustbuster is outside and its too to dark to go out and get it and same with the broom that would...
Board: Muscular Dystrophy 04-24-2012, 03:35 AM
Replies: 5
Views: 1,972
Posted By 2807
travelling with MD

Thoughts anyone?
Do you get to have a holiday? go on a plane? get around another state/country? It must be possible, I wonder if there are travel agents for people with disabilities? Can you take...
Board: Muscular Dystrophy 04-14-2012, 11:20 PM
Replies: 9
Limb-girdle Just diagnosed
Views: 2,035
Posted By 2807
Re: Just diagnosed

thanks for the reply and you too keep in touch Hx
Board: Muscular Dystrophy 04-14-2012, 03:23 AM
Replies: 9
Limb-girdle Just diagnosed
Views: 2,035
Posted By 2807
Re: Just diagnosed

Hi there, I have Limb Girdle but am waiting for muscle biopsy to confirm which specific type, I have a referral from the dr re the counselling but haven't been yet, hubby not too keen on idea feels...
Board: Muscular Dystrophy 04-12-2012, 03:53 PM
Replies: 39
Views: 12,399
Posted By 2807
Re: What Emotions are you dealing with?

Mandy Heidi here my mum and dad feel guilty too as we know of no one in the family that has had it so there is just me! THey lived in a house that had 7 steps to get in and I found it SO hard to...
Board: Muscular Dystrophy 04-12-2012, 03:37 PM
Replies: 9
Limb-girdle Just diagnosed
Views: 2,035
Posted By 2807
Re: Just diagnosed

Hi Suzebell well no one around me has it or in my family that we know has had it so that is where i differ to you. I just read Mandy37 comment about the parents feeling bad and guilty and mine are...
Board: Muscular Dystrophy 04-12-2012, 01:32 AM
Replies: 9
Limb-girdle Just diagnosed
Views: 2,035
Posted By 2807
Re: Just diagnosed

We are all here for you, this is a god place you have come accross. I can kind of relate to what you said your husband said as it does seem to be something that you have to deal with as it happens...
Board: Muscular Dystrophy 03-31-2012, 03:55 PM
Replies: 39
Views: 12,399
Posted By 2807
Re: What Emotions are you dealing with?

Dear Mandy thinking of you and hang in there Heidi.
Board: Muscular Dystrophy 02-09-2012, 01:58 PM
Replies: 39
Views: 12,399
Posted By 2807
Re: What Emotions are you dealing with?

WOW I just discovered this post and it was exactly what i needed to read through, its funny how sometimes when one needs something all of a sudden without effort it is there in front of you.
THANK...
Board: Muscular Dystrophy 01-09-2012, 12:31 AM
Replies: 4
Limb-girdle LGMD & Stress
Views: 1,788
Posted By 2807
Re: LGMD & Stress

Hello there Heidi from Australia 42 just wondered when you were diagnosed with your LGMD? I was diagnosed 2 years ago and at that stage had my own business (stressful) which I gave up last year and...
Board: Muscular Dystrophy 01-09-2012, 12:02 AM
Replies: 0
Views: 911
Posted By 2807
any info

HI there everyone surfing around today and stumbled across myostatin and dystrophin anyone any info about any of this? can't post web addresses here but it was an irish health website it is so hard...
Board: Muscular Dystrophy 11-18-2011, 12:59 AM
Replies: 3
Views: 1,204
Posted By 2807
Re: dread social occasions

Thanks Mandy and Greetings I appeciate your replies immensley :)
Board: Muscular Dystrophy 11-08-2011, 12:00 AM
Replies: 3
Views: 1,204
Posted By 2807
dread social occasions

Well this weekend just gone I had been dreading for ages the wedding of my husbands sister. I would have done ANYTHING to have gotton out of going.......
.....but in the end I met some lovely...
Board: Muscular Dystrophy 10-20-2011, 02:31 PM
Replies: 3
Views: 1,452
Posted By 2807
Re: hello i need a little vent

thank you SO much Mandy37and dreaman, for your replies it is so comforting that there are people who understand EXACTLY how you feel cos they themselves have been there.
totally agree with...
Board: Muscular Dystrophy 10-18-2011, 12:24 AM
Replies: 3
Views: 1,452
Posted By 2807
hello i need a little vent

I am finding things harder and harder and as I write this it is through tears,
I feel guilty posting this as it is not very positive and makes me feel selfish that I cannot share a good story with...
Board: Muscular Dystrophy 09-27-2011, 09:04 PM
Replies: 0
Views: 1,006
Posted By 2807
Smile thanks everyone

Hello everyone just wanted to say hello and keep in touch, so thankful for the internet hey how did we manage before? to meet online people who can COMPLETELY relate to what you are feeling is such a...
Board: Muscular Dystrophy 07-30-2011, 04:15 PM
Replies: 9
Views: 4,690
Posted By 2807
Re: your opinion/advice on taking creatine and COQ10.

Welcome C from one newbie to another all of these people here are great and it is so nice not to feel so alone anymore and there are people out there you can connect with who UNDERSTAND.

I too...
Board: Muscular Dystrophy 07-21-2011, 05:21 PM
Replies: 9
Views: 4,690
Posted By 2807
Re: question for Michigani and anyones elses thoughts appreciated

Thanks for that Mandy and NP74. Can I ask NP74 was the creatine in a powder form or a tablet? which would you recommend? THANK YOU H xx
Board: Muscular Dystrophy 07-19-2011, 08:17 PM
Replies: 9
Views: 4,690
Posted By 2807
your opinion/advice on taking creatine and COQ10.

Hello there all and Michigani just wondered if you could give me your opinion/advice on taking creatine and COQ10.
Have you/do you?
and has either been any help?
Any insight would be greatly...
Board: Muscular Dystrophy 07-12-2011, 05:00 PM
Replies: 7
Views: 2,071
Posted By 2807
Re: Venting

this message board I am SO glad to have found it.
To be able to write to people who actually know exactly how you feel......its a relief.
Thank you
Hxx
Board: Muscular Dystrophy 07-07-2011, 12:47 AM
Replies: 23
Facioscapulohumeral Homebound
Views: 5,212
Posted By 2807
Re: Homebound

Thank you Mark much appreciated Hxx

CREATINE what are your views on this Mark to help with MD? any info?
does it come in a tablet? and a powder to drink?
also COQ10?

Many thanks in advance.
...
Board: Muscular Dystrophy 07-05-2011, 03:14 PM
Replies: 23
Facioscapulohumeral Homebound
Views: 5,212
Posted By 2807
Re: Homebound

THANK YOU to Mandy and yncruzr for your replies. How comforting to be able to connect with you. Will be in touch again Hxx
Board: Muscular Dystrophy 07-04-2011, 01:40 AM
Replies: 23
Facioscapulohumeral Homebound
Views: 5,212
Posted By 2807
Re: Homebound

just have to let out some thoughts!

husband and I are discussing getting a new car at present we have a manual car. He said maybe we should get an automatic,,,when I asked why he said it would be...
Board: Muscular Dystrophy 07-01-2011, 01:03 AM
Replies: 23
Facioscapulohumeral Homebound
Views: 5,212
Posted By 2807
Re: Homebound

Me again just saying hello had a bit of a flat day today.... sometimes I just find it hard to be bothered to do anything......

Just read my post and it didn't read too good, I am OK :)

Have...
Board: Muscular Dystrophy 06-29-2011, 04:11 AM
Replies: 23
Facioscapulohumeral Homebound
Views: 5,212
Posted By 2807
Re: Homebound

2807 we will support you esp in your early stages and feel free to ask any questions and know on this site we are straight forward and you will get honest answers if you up to it

Mandy[/QUOTE]
...
Board: Muscular Dystrophy 06-28-2011, 06:59 PM
Replies: 23
Facioscapulohumeral Homebound
Views: 5,212
Posted By 2807
Re: Homebound

Just found this message board today and am relieved to find other people out there who have the same feelings as me both good and bad. I was diagnosed with MD limb girdle last year and am still very...
Showing results 1 to 44 of 44

 







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