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Old 10-04-2010, 09:29 AM   #1
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Hope everyone is OK

I hope everyone is doing OK these days. It's been pretty quiet hear on the MD board. I'm getting along. My albuterol treatment still seems to be helping but of course the LGMD is progressive. I truly believe it took me back 6-12 months as far as my energy and physical abilities go and now the MD is catching back up. Still I'm thankful that my doctor put me on the drug because I don't think I'd be climbing stairs anymore nor be able to get myself in and out of my house.

I did go back on the CoQ10 which I'd discontinued 2 months ago thinking I no longer needed it. That seems to help. Of course the CoQ10 is $30/month where the albuterol is $20/3 months. (A bargain compared to some of YOUR treatments I'm sure!)

Mentally I feel pretty good. I'm getting out on my scooter twice a week and trying to do things with my family. Not looking forward to the Michigan winter ! Also looking for a new lease car. My Nitro SUV lease is up in 3 weeks and it's the ONLY vehicle on earth that I can drive, plus it's the vehicle that hauls my scooter. I think I'll get the same thing because I know it works. But I have to renew my driver's license "in person" in January 2012 so I'm worried about that. Certainly they give out licenses to handicapped drivers all the time. I'll know when it's no longer safe. I'm just hoping for 3 more years!

Well everyone.....check in and let me know how you're all doing. Hopefully you're all good.

Mark

Last edited by michigani; 10-05-2010 at 10:46 AM. Reason: spelling

 
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Old 10-04-2010, 02:45 PM   #2
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Re: Hope everyone is OK

Hey Mark

Thank you for the update. I am going to see my neurologist tomorrow morning, I hope that he will allow me to up the albuterol dose, I am still only on 6mg and actually ran out of pills the other day and the pharmacist wouldn't refill because the Dr had written the RX wrong. I will talk to him about it tomorrow as I am still feeling significant increases in my strength. I have been able to walk down stairs with minimal help, and I have started going shopping on my own again only using a cane (My husband is not sure he likes it as I seem to have created a monster, but I do enjoy the little bit of added independence). If my neuro will not let me increase my dose I may just discontinue the experiment, and ask my psychiatrist for an increase in my adderall as that has shown to increase my strength just as much as the albuterol has. My PT has noticed significant changes in my strength and is very impressed!

My major complaints are as usual my depression issues, I was doing really well for a while, I felt strong both physically and mentally, but my mood has taken a huge hit again, and I am back to where I was about a year ago. It is really strange though as I know I will get through it, and my mood will get better, but it doesn't make it any easier. It really is an odd feeling to feel so down, be able to see light at the end of the tunnel, and yet feel as if it doesn't matter. My biggest fear right now is the day I will no longer be able to drive myself places, I drive a Jeep Liberty and love it. Last week I had two cars cut me off, and I had no trouble engaging the brakes etc My husband has promised to let me know when he no longer feels confident driving with me. I still teach two afternoons a week, I tutor a 12th grader in geometry at home at night, and I work out in the pool every morning.

Anyway, if the MI winter is to bad, come on down to FL, we have a spare room ;-)

P

 
Old 10-05-2010, 10:58 AM   #3
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Re: Hope everyone is OK

That's funny. The Nitro and the Liberty are the SAME car, only different body shells. It's just the right height to get in and out of. When I get my new lease I will have my hand controls put on that car. You do realize that All the big auto makers will PAY for hand controls......up to $750 if you buy or lease a new car. I could not drive without them. It would take me 10 seconds to get my foot on the brake pedal. THAT would not be good!

Hope your depressions takes wings and flies away. I'll let you know if I decide to rent that spare room down in Florida!!!!

Take care!

 
Old 10-08-2010, 02:11 PM   #4
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Re: Hope everyone is OK

I didn't know they were the same car. I love my Liberty, I just got it in January, we bought it used. It is actually my first automatic car, it is kind of hard to take the country out of the girl ;-)

You don't need to pay rent for the room as long as you do the cooking and have dinner ready when I get home from work ;-)

The depression is being taken care of, my therapist and psychiatrist both agree that it is a "chemical" issue so my meds are being adjusted and I should feel better soon.

 
Old 10-08-2010, 02:48 PM   #5
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Re: Hope everyone is OK

Hello All,
I'm glad that everyone is doing fine. I don't check this site as much as I need to but I try to stop by at least once a month. I'm doing well, trying to get prepared for this Virginia Winter and my hibernation period, lol. Trying to get started on my Christmas shopping. I go see my pulmonologist this week, and my PCP next month so I won't have to go back for another 6 months.

Best wishes to all!!!

 
Old 10-08-2010, 05:56 PM   #6
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Re: Hope everyone is OK

Quote:
Originally Posted by dkbladez View Post
Hello All,
I'm glad that everyone is doing fine. I don't check this site as much as I need to but I try to stop by at least once a month. I'm doing well, trying to get prepared for this Virginia Winter and my hibernation period, lol. Trying to get started on my Christmas shopping. I go see my pulmonologist this week, and my PCP next month so I won't have to go back for another 6 months.

Best wishes to all!!!
Hey S ! Nice to hear from you. Thanks for stopping by and chiming in!

Mark

 
Old 11-19-2010, 07:32 AM   #7
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Re: Hope everyone is OK

Mark

I was just wondering whether you have any problems with finger tips/grips. I am 46 with LGMD and I cannot walk anymore and have been confined in a wheelchair since last Aug 2009. And now my finger tips have started to go limp, is this normal with progression? have you had anyone talk of similar symptoms that I have.

 
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