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Old 07-03-2011, 03:23 AM   #16
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Re: Homebound

I’m listening to Bette Midler – Rose while reading the posts. I’m getting tears in my eyes reading how so many of you lost family members in different ways

I can be so fortunate that I haven’t lost anyone to any illness or accident that I’m close to and hope that will never happen while I’m still on earth.

I went to a party of a friend last night at a venue that was held under tents. It’s freezing cold in Cape Town and I went prepared with blankets and warm clothes.

Beforehand I made sure those 2 hours prior to going I had nothing to drink to ensure that I would not need the restrooms at all and maybe be able to have 1 coke while I’m there

Well arriving at this place I gave a big sigh. It’s been raining the whole day and the parking bay was covered in mud. There was so many stairs everywhere but luckily I took my manual wheelchair along.

My sister is a bad driver and I was clinging to the chair fearing that I might tip over any second as the part to the path was so unsteady and full of mud holes.

Some nice young men came over to help up the stairs and it was quite a mission to get to the tent where the party was held due to masses of people watching rugby and me having to squeeze past everyone.

I met a woman sitting at the same table as me and we starting chatting about things in general. She didn’t see the chair as I moved over to a normal chair and the wheelchair was moved to another place.

She asked me to join her to the restrooms and I informed her that I couldn’t because of the chair and all the steps and people.

I explained to her what was wrong with me and she got tears in her eyes and told me her best friend has MD. She is at a stage where she needs to be helped with basically everything.

I felt so sorry for her and this was the first time I actually saw the other side of MD and how it affects someone else. I had to console her and ensure her that all was fine and that we have strong wills and adapt to our circumstances.

My friend who’s birthday it was came over to find out what’s wrong and why her friend was crying and holding my hand and told her that she musn't worry about me that I’m a strong person and deal quite well with this.

It was an eye opening for me to actually see how other people deal with this and how they see you. I was also thanked that I made such an effort to come and other people gave excuses like the flu not to go

I wanted to stay a while but unfortunately the cold overwhelmed my body and my legs got so stiff that I had to leave in order to be able to drive home and walk into the house alone (my boys spend the weekend with dad)

I am really glad I went and not try and get out of it as I usually do and maybe just maybe I said something to this woman to make HER deal with the MD a bit better.

 
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Old 07-03-2011, 01:57 PM   #17
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Re: Homebound

Dylan Thomas wrote "Do not go gentle into the good night, Rage, Rage, against the dying light." But I think I like Don Henley's (Eagles) take on it better, "I will not lie down, I will not go quietly". This was the way I lived my life before MD, and I decided early on, after diagnosis, to use this as my life motto. We cannot just lie down and wait for our lives to be over, though some days it seems like a dismal future. We have to rage, give MD a kick in the pants, stand strong in the face of adversity.

I think by chatting and posting we can encourage one another. Give each other hope, strength, and support. Mandy37, you gave that lady what she needed at that moment, you listened. We all want others to hear us, see us, remember us, but we have to do the same in return. You are right! It is hard for our children, families and friends to see us become helpless, but we have to understand as hard is it is for us, it is just as hard for them to watch.

A friend once told me that I couldn't move on with my life until I mourned the person I use to be. She was right! I realized at the time I was hiding, unhappy, stopped short, not knowing the future. Once I mourned my old active self, accepted what may come, I could move on and be happy again. Live it a day at a time. Play the hand that was dealt me. It's been 10 yrs and I am still walking with aid of a cane or walker. Had to give up driving (right side mobility lost), but I find joy in something if I can everyday. A book, my cats, my family, an old friend, something.

And now I add this group to my list of good things. You have all raised my spirits! I enjoy reading your thoughts and want to learn more about all of you. You have all given me hope beyond my limited lifestyle................Thank you!

Last edited by yncruzr; 07-03-2011 at 01:59 PM.

 
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Old 07-04-2011, 01:40 AM   #18
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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 easier for you......

At present I am fine driving our car and sad that he thinks that BUT GLAD too that he thiks that.

I don't know what is ahead and that is what I do find hard, and try I suppose not to think tooo much about the future but when I wake up each morning be thankful for today as that is all we have really got.

unsure but happy Hxx

 
Old 07-04-2011, 02:11 PM   #19
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Re: Homebound

2807 You're husband sounds real thoughtful - that is supper. I would say if you like the standard -stick with it but at the same time depending on your financial situation (meaning if you can't afford to switch cars whenever you want) the auto may be a better choice.

Mandy That was great that you got out. I have panic attacks over the same things you mentioned but it seems once you get past that and just go it usually turns out to be a good time.

nycruz Great way of thinking.We will all benefit from your words thanks

Mark Sometimes I get too chatty and vent when I probably shouldn't but thank you so much for being there and giving us someone to vent to. You seem to be the senior member here and seem to have a lot of our answers. I just hope we can be there for you.


Thanks to you all, Dreaman

 
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Old 07-05-2011, 03:52 AM   #20
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Re: Homebound

I switched to an automatic about a year ago as my left side became a bit too weak and I was afraid of causing an accident

Best thing I done and soooo much easier

In South Africa automatics is scares and the price difference in automatic and manual is quite a bit more

The other thing I also needed was a high enough car that gave a bit of a lift and an automatic Sirion was the ideal car for me

In SA the average cost is about $13 000.

What a great husband you have

Mandy

 
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Old 07-05-2011, 01:48 PM   #21
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Re: Homebound

2807- You may really enjoy an automatic in your new car. I think you will find it less work for you. I bought a cute red PT Cruiser back in '06 to fit my driving needs, not just for the auto tran. but the seat sits higher making it easier to enter and exit. It also fit my scooter nicely in the back when needed. Unfortunately, I had to give up driving in 2010 because my right side mobility became more compromised and I have difficulty getting my foot from the gas to the brake. I wasn't worried at the time about my driving since I am very cautious, but realized one day with my grandsons in the car that I cannot rely on actions of other drivers pulling in and out in front of me or stopping short. Too be safe for myself, my grandkids, and other drivers I decided to give up driving. One of the hardest things I have had to do because it was the source of my independence too. Now, another year later, less mobility, I know I made the right choice for everyone concerned.
As we progress in our "issues", we face a lot of hard decisions, but in the long run they are usually the right ones considering all the hardships we face daily.

 
Old 07-05-2011, 03:14 PM   #22
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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

 
Old 07-06-2011, 01:39 PM   #23
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Re: Homebound

2807,

I am still driving....somehow. Through divine intervention, perseverance, strategy or all of the above. I drove an automatic years before my diagnosis. 3 years after diagnosis I began to feel strange and unsafe driving my pickup. First i could not get my foot on the brake fast enough. (Yikes ). Then I had trouble lifting my legs into my full size pick-up. Then I had trouble getting up onto the seat.

I sold my full size truck and bought an SUV who's seat was just the right height. Then I had hand controls installed. I now have a vehicle that I can get in and out of and drive with complete confidence with my hands. I couldn't begin to brake or clutch with my feet. (PS-I always LOVED driving a stick!)

I realize you are not as far progressed as me, thank goodness , but I WOULD think of the near future when choosing a car. And by the way, for anybody that is interested.....all the major car companies American and Foriegn, will pay for hand controls if you buy or lease a new vehicle. They will send you a check for up to $1000 USD when you submit your adaptive equipment receipt and a doctors prescription for the controls. I've done this twice already through Chrysler. Just an FYI that might help keep some of you on the road.

Take care,

Mark

 
Old 07-07-2011, 12:47 AM   #24
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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.

12th july was just having a read through older posts and came accross your one on 'walking on scarey surfaces' and YES i can totally relate to this... when I go to do the shopping to walk across the empty car park freaks me out I have to walk all around the edge where there is a wall or fence to touch if I need or wait until a trolley is returned so I can wheel that in. Feelings like this where you feel like you are going to fall are so weird and must be hard for others to understand, I walk with a stick which gives me some confidence but I feel if I don't keep trying to do things then my abilities will slip away but it sure is hard to make yourself do things, sometimes I just want to stay in the comfort of my own home where I feel safer.
sometimes our challenges are hard but we must keep trying and stay positve hey.
All the best and I am glad to have found this board and people with similar experiences as I do feel very alone with NO one to talk to.
Thank you to all Hxx

Last edited by 2807; 07-11-2011 at 03:33 PM. Reason: added extra

 
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