Another newly diagnosed

Lkaibel

Forum Supporter
Very helpful member
Joined
May 9, 2016
Messages
1,343
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
For Brian with the weight, we went with “all calories are good calories” and I loaded him up on the fun three, protein, fat, carbs. He was tiny anyway (5’6, 125) pre ALS and had always followed a strict diet and exercise regime. I had to get him into the idea that he needed to pretty much reverse his previous mode of thought.

It worked! I definitely credit it with keeping him mobile a little longer.
 

KevinM

Active member
Joined
Mar 30, 2019
Messages
87
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
For Brian with the weight, we went with “all calories are good calories” and I loaded him up on the fun three, protein, fat, carbs. He was tiny anyway (5’6, 125) pre ALS and had always followed a strict diet and exercise regime. I had to get him into the idea that he needed to pretty much reverse his previous mode of thought.

It worked! I definitely credit it with keeping him mobile a little longer.
Indeed. I’m 5’9, 155, and have never been much of a big eater. Pounding the calories now, though. Three beers a day doesn’t hurt, either!
 

KevinM

Active member
Joined
Mar 30, 2019
Messages
87
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
Indeed. I’m 5’9, 155, and have never been much of a big eater. Pounding the calories now, though. Three beers a day doesn’t hurt, either!
Just thought of one of those great Far Side comics by Gary Larson that seems an accurate metaphor for eating and drinking whatever the hell we want. Two guys in a rowboat fishing, end of the world mushroom clouds blossoming all around them, and the one fellow says “I’ll tell you what this means! No size restrictions, and screw the limit!

And thus it is with us....
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,984
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
Definitely all calories are good calories. Sure eating healthy and balanced is good - but not losing weight is better!
 

Michael_67

Member
Joined
Sep 1, 2019
Messages
14
Reason
PALS
Diagnosis
08/2019
Country
US
State
NY
Hi Nikki,
In another thread, Kevin, myself and possibly some other newly diagnosed were discussing the possibility of putting together a conference call support group for the newly diagnosed. We were wondering if you knew if there were a secure way to use this portal to exchange phone numbers. Please let us know if you have any thoughts on this. Thank you for all your service!
Best,
Michael
 

ChristineRK

Active member
Joined
Jun 6, 2019
Messages
55
Reason
PALS
Diagnosis
08/2015
Country
US
State
OH
Unfortunately, though not unexpectedly, Dr. Pulley at Jacksonville Shands today confirmed my ALS diagnosis. I have known for some time this was coming, but as everyone knows, the actual confirmation is nothing less than shocking. My poor wife and daughter had held out hope, and as much as I had tried to prepare them, they were understandably inconsolable. The toughest day of my life, and theirs. This is a big gross bag of sh—.

When I last posted after my exam with Pulley on April 25th, he had not made the call until he saw me again for evidence of progression. At that time he noted slight clinical weakness in my right arm and left thumb, and today noted progression of weakness in those areas as well as slight ankle weakness as well, in addition to atrophy of my shoulder muscles and the muscles in my left hand. Perhaps most horrifying, he believes that I have a relatively fast progression because of the change in only a month and a half. My time is limited, folks, and I’m terrified.

If there is a “positive” side, I still do not have any obvious impairment at this moment in time. I can still walk (still can do heel to toe walking with no issue), have full use of my arms and hands (albeit weaker and with a lot of shakiness and tremors after exertion) and am able to function normally for the time being. I expect that to change fairly rapidly over the next few months though. There is no bulbar involvement at all, as I am LMN dominant.

Enough for now. I am drinking a cold beer, just swallowed a Xanax, and am trying not to throw up in my mouth. Thanks to all of you, the bravest people on earth, for being here. I hope I handle the coming months with as much grace and courage as the other PALs here I have come to respect and learn from over the past few months. Strength to us all. Kevin

Hi Kevin. I'm so very sorry about the confirmation of your diagnosis - welcome to the club you don't want to be in - BUT the people who are in this club are the best club members to have. This has helped me not only focus on 'me, me, me' - but on others as well and to realize that with this disease there are all kinds of struggles with all kinds of people.
When you said you had a beer with your Xanax - I had to laugh! I don't normally go an buy one beer for myself - but guess what I did tonight?? I am no means a 'teetotaler' - I just don't usually have it in the house but enjoy it with friends when we watch sporting events. So, YOU must be the reason I bought a giant can of Bud Light! I'm going to crack it open and have a cheers to you!
Again - I'm so very sorry, but reach out when you need to, share a though or two when you need to, rant when you need to - WHATEVER YOU NEED TO DO! WE ARE ALL HERE FOR EACH OTHER!

~CHEERS!

~Christine
 

ChristineRK

Active member
Joined
Jun 6, 2019
Messages
55
Reason
PALS
Diagnosis
08/2015
Country
US
State
OH
Kevin,

I'm so sorry your diagnosis was confirmed. Don't buy into the fast progression and I'll tell you why. My strength tests change depending on my stress level, the time of day, the amount of fatigue I feel coming into the exam. The very first time Mayo strength tested me they said I was a five in every area. My EMG was their main concern. Three months later I was 4 in my left thumb, my hip, and my ankle. Three months after that I was back to 4+ in my hip. All done by the same doctor. Another big plus is that you are limb onset.

Have you had a pulmonary function test for a baseline. Again, this test can vary widely depending on your stress level, your fatigue level (I do much better before eating anything), and the person doing the test. The most comprehensive test is at Mayo and the second would be Florida Hospital (I think they changed name to Advent Hospital.) Shands doesn't test respiratory muscle strength which, IMO, is one of the most important tests.

Nobody can predict your progression. I think my local neurologist caught mine well before I would even think anything was wrong. In 2012 I stood up and my left ankle turned and sprained for no reason. It healed and I started running again but not as fast and not as far. Then in 2013 I fell and got a TBI. The following Summer (2014) I got cramps in my left foot and fasciculations in that foot and calf. I went back to my local neuro because my neck was bothering me (prior car accident) and he was brisk reflexes. He did a quick EMG and said I should to to Mayo. I put it off for six months until I felt like I had to stop running and start walking.

The whole next YEAR I had little, if any, progression. By then I was diagnosed and had my first fall. They said I'd never walk again so I ordered my PWC. But it was my "good" leg that was insured and I DID walk again. I do have significant atrophy in my "good" leg from six months of inactivity and it did speed up progression......but I'm still walking. I eat like a horse and have gained the amount of weight Mayo suggested.

I have one regret and that is that I didn't retire the day I was diagnosed. I should have traveled when I could still walk several miles a day.
Hi! I know there has been mention of the brisk reflexes (which I have also experienced). Has anyone ever experienced a decrease in their brisk reflexes or an 'up and down' type of thing?
Thank you!

~Christine
 

SpeedyMarie

Member
Joined
May 24, 2019
Messages
20
Reason
PALS
Diagnosis
08/2019
Country
US
State
TX
I’m sorry for the diagnosis Kevin, you are not alone. It is hard and f&[email protected] scary. A thousand things come to mind. Give yourself time to absorb this information. You are you ALS doesn’t change that. Yes disability and death are in both our futures. We are both alive and can still once it calms down live man you still have some time
 

Scotiaspirit

Distinguished member
Joined
Nov 21, 2015
Messages
177
Reason
PALS
Diagnosis
11/2015
Country
CA
State
Nova Scotia
Kevin, welcome to the club nobody wants to be a member of. Wishing you slow progression, many days to spend with friends and family and that you retain mobility as long as possible. Sorry for your dx.
 

KevinM

Active member
Joined
Mar 30, 2019
Messages
87
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
Kevin, welcome to the club nobody wants to be a member of. Wishing you slow progression, many days to spend with friends and family and that you retain mobility as long as possible. Sorry for your dx.
Thanks so much for the positive vibes (and thank you as well, SpeedyMarie). I can still do everything, but my muscles aren’t happy if I get too strenuous. Seems to be affecting shoulders and back My wife and I are headed to Sedona AZ and hopefully the Grand Canyon next week if the weather allows. Going while I can, as so many here have suggested.
Hi! I know there has been mention of the brisk reflexes (which I have also experienced). Has anyone ever experienced a decrease in their brisk reflexes or an 'up and down' type of thing?
Thank you!

~Christine
Hi Christine. I don’t know about the reflex question. I have pure LMN involvement right now, so I do not have brisk reflexes, which is more associated with UMN involvement if I understand correctly. P.S. Drinking another beer today. Cheers back at you! Kevin
 

KevinM

Active member
Joined
Mar 30, 2019
Messages
87
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
Kevin, welcome to the club nobody wants to be a member of. Wishing you slow progression, many days to spend with friends and family and that you retain mobility as long as possible. Sorry for your dx.
Thanks so much for the positive vibes. I’m still able to do pretty much everything nearly six months after diagnosis. Shoulders and back seem to be affected the most, but I’m still strong enough for now. Wife and I are flying to Sedona AZ next week, and plan a couple of days at the Grand Canyon if the weather allows. All the best, Kevin
 

lisa g

Distinguished member
Joined
Apr 17, 2019
Messages
107
Reason
Other
Diagnosis
04/2019
Country
US
State
FL
Kevin enjoy Sedona one of my most favorite places. So peaceful.
 
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