Newly Diagnosed

[dbltree]

That's about the range I get too MB...did a search for HANDHELD DIGITAL SPIROMETER and found prices near $300 so may skip that.

PS let me know if you find the grip tester?

My right hand/wrist/forearm is slowly getting stronger and I can close 3 of 4 fingers tight to palm, before even a large handle toothbrush would slide right thru. Able to lift 5# weight ball and hold it now...absolutely don't know what to think? Atrophy nearly gone in forearm but bad in left arm? Seems it should be other way around but I'm not complaining!

Happy 237th birthday America!

 

[pearshoot]

said it many times before. positive als symptoms apr/090 started strength weight training oct/09, 5 nights a week pushing to max, barbells, dumbells, 12 machines. by feb/2010 I had added a lot of muscle and strength. diagnosed feb/2010, backed off 20% weight, three nights week. oct/2010 backed off another 20% as advised by herbalist. continued at that rate for another year then slowly backing off while carefully listening to my body. I do several range of range of motion exercises at home but still go to gym, minimum weight upper body, some additional
weight lower body

 

[pearshoot]

dbtree what is the name of site you ordered your dynamometer?

 

[dbltree]

I just searched " Camry Electronic Hand Dynamometer - Hand Grip Strength Meter" and located it on Amazon but also many other sources including Ebay. Links are frowned upon here or I would post a link.

Pre ALS I did not "exercise" but by the nature of my occupation (farming/timber work) I was very physically active, post ALS I started to use our elliptical but was only able to do a short 10 minutes, worn out and gasping for air. After starting the Deanna Protocol my strength and breathing improved rapidly and is maintaining.

I use the following but of course other makes models may be as good or better:

NordicTrack E 5.7 elliptical

Confidence vibration plate

Reflex bag (punching bag)

5# weight ball

Resistance bands

Digi-flex hand exercisers

Powerweb hand/finger exercise

It's imperative to not lose coordination as it's extremely hard to get back and non use leads to paralysis which is even harder if not impossible to reverse.

Those with access to a gym or physical therapist can use even more options but those are what I have come up with for home use.

 

[debra6004]

I live in Florida and my legs are always cold, stiff, and swelling (especially in the feet). My symptoms are still primarily below the waist.

 

[Daisy2182]

My mom was recently diagnosed with ALS. Her symptoms first started about 7 months ago. All the doctors she saw told her she had a stroke. She's been going to physical therapy and just started speech therapy when she received an ALS diagnosis. One of the first things the doctors told us was to make sure she continued her physical and speech therapy. Well, she told her speech therapist about her diagnosis, and explained that her doctor referred her to an ALS clinic for a second opinion which she hasn't gotten yet. Her speech therapist sent her home and told her it was a waste of time because in about 6 months she would no longer be able to talk or eat... Am I the only one who thinks that is completely unacceptable, insensitive, and highly unprofessional? Doesn't she need continued speech therapy? He told her to call him after she gets a second opinion. Has anyone ever experienced anything like this?

 

[Debd4l]

If the doctors suggested that it is in her best interest to continue her therapies and she has a desire too than she has every right to continue to do so. They may or may not help. I know that range of motion exercises can at the very least keep the muscles more active and help with some discomfort for patients. I would consider switching speech therapists and possibly filing a complaint against the one that was so insensitive to your Mom..

My mom was recently diagnosed with ALS. Her symptoms first started about 7 months ago. All the doctors she saw told her she had a stroke. She's been going to physical therapy and just started speech therapy when she received an ALS diagnosis. One of the first things the doctors told us was to make sure she continued her physical and speech therapy. Well, she told her speech therapist about her diagnosis, and explained that her doctor referred her to an ALS clinic for a second opinion which she hasn't gotten yet. Her speech therapist sent her home and told her it was a waste of time because in about 6 months she would no longer be able to talk or eat... Am I the only one who thinks that is completely unacceptable, insensitive, and highly unprofessional? Doesn't she need continued speech therapy? He told her to call him after she gets a second opinion. Has anyone ever experienced anything like this?

 

[dbltree]

I go to University of Iowa ALS clinic every 3 months and the have physical, occupational and speech therapists there to help PALS learn to adapt and live with ALS. They are knowledgeable about ALS and very compassionate and they have never or would ever say what your Mom's speech therapist said.

My advice is to check with your ALS Society people and get names of therapists who are used to treating PALS. Your Mom could be walking and talking 3 years from now so very presumptuous of an ill informed therapist to make those comments.

I've had ALS for almost a year and albeit not normal, I'm still walking and talking!

 

[adozi]

Hi dbltree,
I wanted to share some videos of the range of motion exercises that people have mentioned. My mom uses these for me.

Lower Limb range of motion

Upper Limb range of motion

 

[dbltree]

Thanks! Great info!

 

[dbltree]

July 26th, 2013 130 days on DP

What are the odds of getting BOTH Clostridium difficile and cryptosporidium infections at the same time! 15-24,000 people, young and old die from C. diff each year and it nearly got me! I ended up in the hospital for several day with severe dehydration and dangerously low BP. Long hard road back but I did learn a few things!

My Dr. recommended Fecal microbiota transplantation (FMT) (ewww) but amazingly enough Mayo Clinic says it is most effective treatment for C diff AND people with Parkinson's and MS frequently walk again after treatments...who knew?

You research the subject including DIY versions as it's helping a lot of people these days, if it would have a positive effect on ALS I can not say but have an appt with UI next week to discuss.

I also learned about using good probiotics and I started a thread on Winning the Fight on the subject in the Diet forum.

I was off the Deanna Protocol for several days while in the hospital and my fingers started to re-curl, profound weakness, cramps, clonus etc. Took a few days to get back to "normal" but it really showed me what the protocol is doing!

My wife insisted that I eat toast (gluten) while sick and that also caused inflammation...done with that and back on a paleo style diet.

Doing 2-3 25 rep hand workouts per day with digi-flex (36#) and picking up speed! Daily grip tests run 56-60L and 26-30R (up from 44L and 14R) I can do 25-30 reps with 5# weight ball with right hand and can now hold it for 5 count each time...couldn't lift anything in May!

Same dual 20 min elliptical workouts..10 minutes on toes, breath thru nose so no loss of lung capacity. Voice took a hit while sick/off DP but improving again.

Early on many people offered advice on SSDI which was much appreciated. I applied in April, got approval in May, Medicare started July, 1st ck will arrive end of August just to give new PALS a rough timeline. Remember to write "terminal" on the application and then defy the odds and live long!

 

[RobbiJ]

I have just received the definite ALS diagnosis, previously was just MND/probable ALS. At least I know now. We have a home based business so even tho I work in it, my husband is primary on our taxes and we just file as a sole propriortiship. So no SS. A few years ago I figured out how to file so my work could be counted for SS. This year I will have enough credits to apply for SSDI. So I guess after I do our taxes in Feb I will be trying.
My doctor is recc. Rilutek...does anyone have experience with it? Thank you.
RobbiJ

 

[R9L13026]

Rilutek...does anyone have experience with it? Thank you.
RobbiJ

Do a search on this forum. You will get many viewpoints on this drug

 

[dbltree]

August 16th 2013 151 days on DP

Long slow process but right hand/fingers/forearm continue to get stronger and very slowly atrophy is disappearing. Functionally it hasn't translated to much but to regain strength when one has a progressive disease like ALS is rare as hen's teeth as we say out here in the country.

My previously paralyzed fingers are now movable and I can easily make a fist or open my fingers although not entirely straight. Still doing 100's of reps a day with 36# digi-flex and maintaining grip strength at 26-28 (was 14), fingers loose and pliable and I can straighten them out and use them with no pain.

Right ankle has a long ways to go but getting ever so slightly stronger as days go by. I do breath stacking daily and can hold breath for 20+ seconds after 3rd inhale, breath easily thru nose when working out on elliptical.

My wife can only do 10 minutes at 42 rpms, son can do 20 but huffing and puffing so I feel good about breathing! :smile:

 

[dbltree]

Based on USF research and feedback from PALS the Deanna Protocol has been updated...please download the latest version at winningthefight

Because of PALS reporting significantly slowed or stalled progression, Dr. Bedlack of ALSUT is taking another look at the DP.

I continue to re-gain strength in my right hand/arm albeit slowly, breathing above normal and still walking/talking/eating.