further details

[bigbrat41]

Good morning All,
As I just registered a few days ago, I thought I should probably fill in some details about myself and my status.
I am 63, just, and was diagnosed Jan 14, 2016. In June of 2014 I started to notice fasics' running rampant. My PCP didn't seem concerned even with an elevated CPK.
Next stop, a few moths later, was the first Neurologist and a subsequent EMG. Abnormal and 3 possible causes. 2 of which were quickly ruled out after numerous tests, scans, and bloodletting.
Might mention that at 63 I still push mowed the yard and sholved snow from drive. It was shocking to find myself extremely out of breath after pushing my S10 pickup truck. So I also requested a PFT. Results were not terrible even for a heavy smoker, me.
I requested a second EMG approx. 6 months after the first and received mixed results.
Beside the fasics' ( all over ), ever worsening cramps, I was also convinced of a loss of strength in my right hand.
RANT
Neurologist need to eliminate these BS strength tests, "stick your hands out and raise them" with their hands resisting. My first Neuro' was a super nice female Doc' and even impaired she felt strength. Yeah i could have lifted her but healthy I could have thrown her down the hall. Use devices that MEASURE strength. My second Neuro', the ALA Guru did !!!!

Shortly after my 1st Neuro' told me that she did not know what else to test or do... I asked my PCP to get me a muscle biopsy. Oct of 2015 my right bicep was biopsied and came back with "neurogenic changes.
During this period my right hand continued to deteriorate. Little finger being the most involved. ( weakness is now quite pronounced , still capable of gross motor skills but little strength and control of fingers is waning )
Time to see the Guru. Scheduled the third EMG with himself performing the test. Was diagnosed that day.

I must mention that after the first EMG, when ALS became a possibility,and test after test came back good......
I started smoking marijuana. My lady once asked if it helped. My answer was no,but it helps me deal with the symptoms.
The guru considers my case pretty "weird" based on the progression rate. Very slow.

Numerous sources say that pot slows the progression of ALS soooo, I guess I'll continue my criminal lifestyle and to damage my lungs with the ONLY weapon of choice ( PA has only just now legalized MM. It will take years to become available.)

I am still not good with the disease. Tears and hurt are way too much of my life. I try to laugh and enjoy all that I can, and that's a bunch. We are trying to turn a rescued 2 year old coonhound into a house pet. I love her to tears literally. She broke my freaking nose last week. I was too close , she flipped her head, caught my nose. I had time to yell "*#-+, she broke my nose" before the blood ran off my face. If I can figure out how to vadd a photo....... She is a beautiful dog, but has absolutely no manners.
I cannot stress enough how much I admire the courage and resolve of all of you PALS and CALS.
God Bless Us All

Greg

 

[ShiftKicker]

Welcome to the group where many also quietly follow the criminal lifestyle... Whether it works to slow things down or just plain makes you feel better, if it's effective, do it!

Yes. YES! With the measuring tools. I had the same issues beginning. I was an athlete that was practicing up to 15 hours weekly and weightlifting on top of that and could wall sit for 5 minutes no prob and push up and do burpees till the cows came home. My legs were extraordinarily strong, so I passed the "push against my hand" exercises with flying colours. My physio was the one who used instruments and took baselines and noticed my left and right sides were vastly different.

I have to laugh about the dog- our largest golden did the same with my son a couple months ago. This was after me "nagging" him to stop putting his face down so close to the dang dog because he was encouraging him to lick faces (a personal issue I have because a large golden going for someone's face for a "kiss" is not always welcome- bad manners!). Though his nose wasn't broken, it took a while to clear up the nose bleed. Anyhow, lesson learned. I hope you persevere with your gorgeous dog as a house pet, because there's nothing more comforting than a large dog leaning against your leg or at your feet (or in your lap) while relaxing in an arm chair.

I wish you a slow progression.

Fiona

 

[bigbrat41]

Trying to load photos of my Beastie Dixie. We left the name that she came with hoping to reduce confusion. Not to worry, you can call her Shithead and get similar results...... being ignored.
Trouble trying to load photos. Can't get " choose file " to go any further.

 

[Nuts]

Greg, I have to laugh about Dixie ignoring you when you call her. We rescued Heidi from the animal shelter almost a year ago I now and she still comes when she darn well wants. I can call and call with no response. If I say the word "walk" or name her friends Mindy and Jake the Cat, she comes a running. Maybe she thinks Walk is her name... She's a Beagle/Chow mix and very smart (she knows the word left, since she must walk on the left when hubby walks her in his PWC, and she has learned to unwrap herself if she gets tangled around a tree--again because he can't), but she's a STUBBORN minx!

Not being ok with this is understandable. Looking for joy instead of dwelling on loss is a smart approach. We slip sometimes, but for the most part we are still able to enjoy our days and get excited about plans.

Becky
Queen of Everything