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Rodstew

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DX UMND/PLS
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12/2008
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US
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TN
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Well I had another EMG today and the dr said it looked ok. He did say it appeared I had a little nerve blockage on side of left knee. He thought this was from a previous pinched nerve in that area. He did say that there was some weakness in the arch of my left foot but he did not see anything that ould cause it and did not think it was significant. But from what I understand most of us have normal EMG's. Oh well he doesn't want to see me for 2 months so I guess that's good news but I hate to think what my Short Term Disibility company is going to say!

He did want me to continue the Baclofen 10mg twice a day for the next week and then double the dose since it seems to be helping the spasms.


Hope all of you are enjoying getting back into the daily routines after the holidays. I know I am.
 

sral

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Congrats on the good news!

You seem to be progressing relatively slowly seeing that your first symptom was in 2004. Regardless of what the results are this in itself is good.

Have a wonderful 2009
 

olly

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hi rodstew.
great news on the emg.
i have a collapsed arch in my left foot with atrophy now.
i believe the weakness in the arch is caused by hypotonia/loss of contraction in that lower leg.
if this was the case with you the emg would have picked that up so that is good news.
 

sral

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Olly,

How are you doing these days? I hope you had a good holiday.
 

olly

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hi sral.
just trying to keep going the same as everyone else.
how are you and your mum?
how is your mums progression going? is she coping better these days?
give her my love when you next see her:)
 

sral

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Caroline,

Your spirit is phenomenal! Thankfully your positive spirit is contagious and makes others feel good.

My mom continues to progress. She is now wall and furniture walking but still refusing to get an assistive device. I think we've all come to a different level (i.e. acceptance) and are now coping better. Her impacted limbs are all still functional (even if at a much lower mobility rate).

I hope your progression is slower and that you're still able to do everything that you have been doing.

Take care and all the best!
 

olly

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uk
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hi sral

there will come a time when your mum will have to accept and use aids.
it is hard,i never got used to using my stick and would no way been seen outside with the walker.
i rarely go out these days and try to manage basic day to day things.
i like to wash dishes or dust,something usefull but my son does most things like vacuming .
does she have aids at home? but just not uses them?
things would be so much easier for her if she did.
 

sral

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Caroline,

My mom wall walks at home and uses a shopping cart anywhere she goes shopping. She hasn't had any falls and seems to be managing and this is why she's still continuing. If/When the day comes, I agree that she'll need to accept an aid.

Sorry to hear that you're not getting out anymore. The good news is that you're still getting around at home doing dusting etc.

Take care
 

Peg B

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Messages
414
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PALS
Diagnosis
10/2006
Country
US
State
Michigan
City
Flint
Hi,

I would also encourage your Mom to use the accommodations she has available. I would never get across Cosco without my grocery cart. I remember once saying to a lady "it's so nice to have a grocery cart to use as a walker." She gave me the dirtiest look and said, "That's not funny my mother has to use a walker." I was kind of flabbergasted because I had to use the grocery cart and really meant no offense at all. I thought it was great to have such a helpful tool as a grocery cart.

My cousin who was diagnosed with PLS in the early 1990s, said he uses two canes. (He lives in a different state and I haven't seen him for about 40 years.) I asked him why he didn't use a walker and he said because "two canes is much cooler." and he laughed. But he also meant it.

I use my cane anytime I go to the airport. Two years ago we went to London and I was able to keep up with my daughters and husband going all over on buses and the underground, "the tube." It was great. I would have had to sit in the hotel without it, as I would have been exhausted and in a lot of pain. One time I used my cane in a town near by and my nephew saw us walking. I felt embarrassed then, but then I realized any tool I use gives me that much better quality of life.

I am writing this with voice-recognition softwear. It was so hard to get my students to use this particular tool because they did not want "to be different." When I was embarrassed that my nephew saw me using a cane, I realized how hard it sometimes was for my students-but I also realized they needed the tool to do the things they wanted to do. Those with reading problems had the computer read to them. Because of these tools, many were able to go on to college and succeed. I decided it was OK for me to use any accommodation I needed. I believe nobody really cares how we look using an accommodation. I pray that your Mom lets herself use whatever tools she needs. Afterall if we had really tough hands we would not need to use a hammer to pound in nails. God Bless you. Sincerely, Peggy
 

sral

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Peg,

Thank you so much for sharing your story. I too pray that my mom makes use of the tools available. She's getting by so far but is in a great deal of pain.

By the way, you mentioned that you too have pain if you don't use your cane. How does your cane relieve the pain? Have you had PLS for long?

thanks again
 

Peg B

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PALS
Diagnosis
10/2006
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US
State
Michigan
City
Flint
Hi sral,

I am sorry for the confusion. I do not have PLS. My cousin has it. I was DX with ALS two years ago, but then given a differential DX of MMN. PLS attacks the upper neurons and MMN attact the lower neurons. I do not have signs up upper neuron damage but my EMG is positive for ALS. I have had symptoms since 2002.

But the cane helps prevent the pain that I have after a few minutes of walking and it also helps prevent really bad pain that occurs the next day like when a person works out real hard and is sore the next day. I almost always have some pain in my legs, and my left leg grows numb after a few minutes. I fell on my tail bone and that made my leg go numb and it stayed that way even after back surgery. Don't get me wrong it is not terrible pain I feel unless I over due it and the cane lets me over due it without worse pain. I hope that helps. There is an old song you might like. Its called "I'm Being Followed by a Moon Shadow." It's by Cat Stevens (very old song) about what to do/think when you lose the funtion of a body part. I find it quite comforting. Take Good Care, Peg
 

sral

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Hi Peg,

Thanks so much for the song tip. I'll look it up.

It's interesting that you say you have leg pain with MMN. ALS which is a function of both upper and lower also is described to be painless. Someone really has it wrong!

I'm glad to hear that your progression is slow and that you're still mobile. I'm sorry to hear about the pain but happy that you seem to have it under control.

Thanks again
 
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