Hi level of activity linked to MND?

[halfin]

My story was similar to Jamorel's Joy, I started distance running about 3 years ago when I was 50, did some half marathons and then last year started training for a full marathon. It was as my training was ramping up to very high levels that my ALS symptoms began. One of my biggest regrets is that I did not manage to get the full marathon done before my legs went. I did manage to do one last half marathon a month after my ALS diagnosis, but I knew that would be the end of my running career.

Now my wife is thinking that she will try to run a full marathon in my honor! This would be an amazing accomplishment but I am worried that she will hurt herself. I'm not worried about her getting ALS, even among marathoners that is a very remote chance, just in general she has some joint problems which would make such a grueling race hard on her.

 

[tajmom]

I am not an athlete nor was I particularly active before getting ALS. I grew up in the suburbs and worked as an editor and PR exec (read: desk jobs) before "retiring" to be a full-time mom. Whatever links there may be between military service, herbicides, fitness or what have you may be interesting, and may even provide some clues, but there a lot of people with ALS who don't have those histories or exposures and still have the disease.

Hal, your wife is a CALS so we know she is tough. If she wants to try it I say go for it! What a loving tribute.

Jennifer

 

[Katie C]

Add us to the list... Glen completed 18 marathons, including qualifying for and completing the Boston marathon twice.

 

[Quinny]

My husband has been active and athetic all his life. Sports in high school, surfing, snowboarding, hockey and working out regularly as an adult. The harder he pushed himself, the better he felt. He was diagnosed with ALS in February '10. Mild symptoms had been present for about a year. We didn't want to believe the diagnosis at first (of course) and because of his very slow progression, he had held on to the hope that it was a mis-diagnosis until very recently. This week, he is on a buddy trip out west, hiking, climbing, rapelling, rafting, dirt-biking...All activities that bring him great pleasure. The guys he is with are experienced and know how to accommodate for his limitations. But...these extreme activities have either caused or simply highlighted a more rapid progression of symptoms. His calls at the beginning of the week were full of laughter. His call last night included fears and tears. That is what I hate about this disease: the very activities that bring a man like my husband such great pleasure, will now hasten his death. Such an irony. To complete your "bucket list" will get you there sooner. I don't know if other partners have experienced this, but each time he he wants to go surfing or even to the daily gym workout, I am so torn up inside. Because I want him to do the things he loves, that used to make him feel healthy and strong, but now I feel they are just sucking the life out of him. He returns depleted and frustrated, to say nothing of the danger he's in. It's so hard for him to come to the conclusion that working his body harder makes it worse, not better. It's the reverse of the what he has always known.
I am wondering how others have helped support a partner whose life and very identity has been so tied up in the physical world. I keep telling him this would be such an easier diagnosis for a bookish-homebody like me.

 

[TStewart31]

I am worried about possibly having M.N.D......But i am 31 and the complete opposite....Well i am not really lazy but i do like to sit around and i am not very physically active....I wonder if not being active enough could cause M.N.D?

 

[Lavender Lady]

I have never been athletic. I have kept a busy schedule. I am overweight and diabetic. it does not seem to matter what group you fall into none of us are immune, it strikes whom ever.

 

[Ladyinn]

I've never been athletic but have been "busy" and active most of my adult life. Now simple things that use to be my relaxation - handwork, reading, cooking are now things that frustrate me. Learning to accommodate this disease is a challenge for each of us and re-designing our own bucket list is not easy since our mind still doesn't grasp the body's limitations!

 

[abbas child]

Quinny, I don't believe there's one right answer to this dilemma of your husband's high activity level and what that means for his future. I don't know if he's progressing faster due to pushing his limits. It may be the case. However, until he comes to accept the need for finding something meaningful to do which is less taxing, I doubt you can change him... and you probably know the Serenity Prayer, "Let me accept the things I cannot change", being the phrase in question. I think he will have to figure out what he can do... with suggestions only as they seem to be welcomed.

I was very active before my dropfoot situation left me in danger, and slowed me down. I did have hobbies which then became the integral part of my day, and worked at the ones that didn't require standing up. (My last quilt has quilted lines less than a quarter inch apart; I knew it was my last.) I hope your husband will find things that can help him slow down, such as carving, other woodworking, taking on-line courses... My husband is not into the sports as yours is, but the dear man probably sits down an average of a half hour total per day when he isn't at work (and believes the sitting done there will kill him). I'm also, like you, a reader and have pondered how Phil would deal with this; how very difficult it would be to not use his workshop for building things, or walking in the woods.

As has been stated by others, I don't believe the level of fitness or activity brings on ALS. I suppose I'm mostly just empathizing with you since I've thought so often how much easier it probably is for me than it would be for my husband to be "bound" by the disease.

I pray your fella will know when to stop fighting (before a serious injury), and will find something to replace this active life with. Hugs~ Ann

 

[Quinny]

Thanks for your thoughtful reply.
I would never try to change him! We would not have been together these 30 years if I were not the accepting type. It's how he lives and I accept that, and love that aspect of him. And he has taken me on many adventures which I love him for, because I know I never would have gone there without him. We are truly a match of the "opposites attract" variety. But what I do hope for, and I search for answers and advice for, are those things that can replace the "high" of extreme physical activity. I would love to hear from guys who have had that life and have made the transition to a different way of living with some equanimity. Because at this point, his plan is to end his life when this way of living is no longer possible for him. And I do understand that, from his position, Honoring who he is.
But of course, I want him longer than that...

 

[KC2U2]

Put me on the physically active list, high school and college football, and 10K runner in my younger days. I worked in the fast food business for 15+ years which meant 60-75 hour weeks and almost constantly on my feet and moving. Was running my own business when symptoms began, selling mattresses but also unloading mattress deliveries and helped do home deliveries.

Another ALS patient in my area is Orlando Thomas who played in the NFL with the Minnesota Vikings

 

[Artisto]

I also have read about this connection, very interesting. I myself was a very active person. Wrestling for 10 years, in addition to martial arts for 10 plus years, weight lifting, running, also military service for 10 plus years.

 

[landofsmiles]

Totally opposite for me. Last 20+ years sat at a computer mostly and virtually zero exercise. Even at college the only sport I enjoyed was rifle shooting...a lying down sport!

 

[abbas child]

But what I do hope for, and I search for answers and advice for, are those things that can replace the "high" of extreme physical activity. I would love to hear from guys who have had that life and have made the transition to a different way of living with some equanimity. Because at this point, his plan is to end his life when this way of living is no longer possible for him. And I do understand that, from his position, Honoring who he is.
But of course, I want him longer than that...

Bump...Quinny has a question.

 

[joelc]

I had an extremely active life. Very physical and have successfully made the transition. It is a case of accepting a new reality and making the best of it. At least that is what I was able to do and found other activities to keep my mind active.

 

[mare]

Hi, Quinny-
Like you, my husband has ALS. And, like your husband he was also an active man- playing sports in school, physically active as an adult. (although, not to the extreme your husband seems to be)

But, he had been working out 6 days/week (swimming 3/week & weights 3/week) when he was diagnosed 2 1/2 yrs. ago. He would also bike ride on weekends on park trails (25miles), but had to stop this because he just couldn't do it any longer.
At our ALS clinic, the PT & OT did encourage him to cut WAY back, if not stop. Interestingly though, our neuro didn't push that. He just said, don't over fatigue your muscles, but do what you can.

It was very difficult for him to give up his routine (thinking the same thing i.e. "use it or lose it") and while he quickly had to give up wt. training on his legs, it was a gradual process for his upper body wts. - gradually decreasing the amount of wt. until he got to the point where he said it didn't seem worth it, so I said "quit". It was also becoming difficult to go to the gym 6 days- he was getting tired. But, he loved to swim, so he chose to continue that, 3/week. He would do 2miles (nonstop) in 30 min (for non-swimmers, that is pretty good!), then slowed to 40-45min., then decreased his distance.

All of this was very hard for him to let go of- and when women & guys he use to beat in the pool started to beat him, his competitive side really felt defeated. It was a slow process of him coming to terms with the disease- what it was taking from him. It takes time, and I think every person has to do that in their own way. And you must trust he will realize when he has to cut down his activities, and even give them up all together.

You both are still early in this process- a wise CALS once told me "that first year is tough"; so true! So, give him time. He will eventually cut back if only due to the fact he won't be able to do those things due to weakness.
As for finding other things to do (transition to a different way of life), that will be for him to decide. You can offer suggestions, and they can even be things you do together, but ultimately, it is his choice.
It is similar to when a person retires (particularly if it is a forced retirement)- some struggle at first to find things to fill their time. But I will say this- it is a different way of life for BOTH of you! You will both need to adapt.

My husband is a great reader; some love to be on the computer doing whatever they do on a computer (!). You could get books of crossword puzzles or Suduku puzzles- just have them around for him to pick up occasionally.
Recently, I got Jim an iPad. He didn't think he wanted one just yet, but he loves it! Gets his email, does his computer stuff (which he does more of with this), downloads games for our granddaughter (which he enjoys as much as her).
He downloads lots of books & reads this way now. (didn't think he would like that- likes holding a book, the tactile property) But, loves the iPad & says it is so much easier to hold than a book. It is backlit, so no lamp on when he is reading at night & I'm trying to sleep. OK, I digress!

The point is: as much as we love our husbands, want to help them in any way, want only the best for them, and hate to see them struggle with this- it is their choice & their decision. A very wise forum member wrote something that really gave me insight; he said: (PALS need) "...support not guidance; love not lectures; a helping hand & not a steering wheel."

Write those words down and refer to them often. You will be surprised how often you can apply the meaning of those words to the struggles you will face. I know I do (thanks, trfogey!)

By the way, Jim is still swimming 3/week. He is down to a mile, 50min. in the pool.
He can no longer kick, so it is all arm work, which is good for stretching & ROM.
15min. is spent stretching at the wall; the water helps him to stand. I don't know if it is good or bad for him physically, but I do know it is great for him psychologically. It lifts his spirits & his mood, and that is good for his well-being. So I will continue to take him as long as he can & wants to go!
We just renewed our membership in August for another year- how's that for positive thinking!