New to ALS.

[PilaA]

I was recently diagnosed with ALS in March of 09. I am a 52 year old systems analyst and haven't quite figured out how to deal with this yet. Its very frustrating especially since I was once an Olympic hopeful when I was younger and now I am having to deal with not being able to walk more than 100 yards at a time and am in constant pain. I have gotten progressively weaker in my legs and can also feel it in the back of my arms and my hands. I am still able to do most things like drive a car and work however I am very worried how I will earn a living if this continues to progress the way it has. Does anyone have any advise on what to do? I am trying to stay positive but it gets increasingly harder as the days roll buy. Appreciate any advise anyone can offer.

 

[Zaphoon]

PilaA,

I'm sorry to hear about your diagnosis. I turned 53 this past summer and have a diagnosed of PLS hanging over my head (I think its just a bad case of BFS).

The best thing to do is avoid as much stress as possible, keep your wait up and do range of motion exercises. Also try and stay one step ahead of progression by anticipating needs that are just around the corner.

Stress can exacerbate symptoms and possibly speed progression.

Welcome aboard!

 

[sadiemae]

You will be able to get SSDI disability, but social security makes you wait 5 months after you quit working(actually 6 months till you get a check). You can go on line or call to find out how much your disability check will be each month. You will also get Medicare after 5 months.

 

[Blubear]

Hi PilaA, Welcome to our forum, and I am so sorry to hear of your diagnosis. What Lori said is correct. I know that waiting out that 5-6 months could prove financial ruin for a lot of people, but there seems to be no way around it. indigosd just posted a thread here and listed the specific website you can go to to get SSD. Also, family support is important, do you have that? Wow, an Olympic hopeful?! For some reason, and none of us know why, but A LOT of people with ALS have athletic backgrounds and are very health oriented. Sounds stupid right! Please keep us posted on how you are doing okay! If you have any other questions or just need support, we are all here for you!
Hugs, Blu

 

[handinhand]

Hi Pila, I am sorry you are having pain and that you are here at all. We have a wonderful group of caring folks that are here for you... Hugs, Linda

 

[PilaA]

Wow! Thanks everyone! I feel much better knowing there are people out there that I can talk to. I have a wife and two beautiful daughters but it seems they are not able or willing to understand what ALS is or what I am going through. I sometimes think they don't want to believe what is happening to me. I have always been happy and extremely active so seeing me slow to a crawl is something they are not use to. I think for me, that's probably the most frustrating part of all. I have had to come to grips with it but they can essentially go on with their lives and avoid the issue.

I went to the Mayo Clinic in Minnesota last year and was very impressed with the service I received there. My doctors here, on the other hand, do not seem to know what else to do for me except tell me to hang in there and feed me medication. I have been trying to work out on my own by stretching and riding my stationary bike however its very painful. It seems like everyday I am doing things for the very first time. My arms and legs are sore every single day. I know what it is to confront things head on and be competitive but I have never had to compete 24 hours a day with my own body before. I am thankful that God gives me the strength to do it though. I have to admit, there are mornings where I tell myself to "Man up" and get going but its really hard. At least with you all here helping me it won't seem so bad.

 

[Blubear]

Hi PilaA, I am so sorry that your family is acting the way they do. But know that it is a coping mechanism for some people to live in denial. It is just simply to painful to really look at what is going on. They must love you a lot to deny what is going on with you. In time, they will have to accept it, they will not have a choice hun. My daughter is the same way about her grandpa, she wont go out of her way to call him, or see him. She just lost her step-dad 2 years ago and that took a huge toll on her. I personally do not get it, I am not wired that way, but I have come to realize that people handle things differently. Can you get your wife to go with you to your next doctor visit? Dont make a big deal about it, but just tell her that you need her there because there is just so much to absorb that it is recommended that you have another pair of ears there to help remember everything that is said. Let the doctor know in advance that you need him/her to explain all the things you can expect to happen so your wife can better understand. There unfortunately is not much you can do to fight off the disease just yet, so that is probably why the doc is just giving you a bunch of pills and sending you on your way. Exercising is great and I would do as much as you can to keep your muscle strength up. If it hurts too much ask your doctor for something to help you with the pain. You sound like a really strong person, keep that up as much as possible, but also try to find time to give yourself a hug too so to speak. Try and keep your stress level down as well, that is HUGE with this disease and its progression. In the mean time, until your family comes around, (and they will) I am sending you big hugs hun!
Kari

 

[irismarie]

Hello, friend. So sorry you have to be here.
Re all your exercise, I have been advised on all sides NOT to do too much but to cherish the muscles I still have. tHE physio does stretching exercises, really going as far as he can in pulling muscles without breaking me;-) and he told me if I HAVE to walk with the walker then I should do the stretching exercises after. at MND Association - Homepage there are articles on exercise.

Family members react in different ways. My daughters cannot help enough, my son seems to be in complete denial and makes all excuses not to visit me. Best to rely on friends if possible. One sure thing is that you do have to swallow hope of being completely independent.

Please try not to demand too much of yourself. Try to prepare for the next stage in advance - that was good advice Al put out when I was first around here. Find a way to organise as much practical aid as you can to be as independent as possible and be prepared for black moments which will come unbidden, in spite of the many good things we have to be cheerful about.

This site is a lifeline and I hope it will help you as much as it helps me. Here you will see true love.

 

[PilaA]

Thank you Kari and IrisMarie for your wisdom, support, and love. You don't know how much it means to me to receive a hug and an encouraging word during all this. I feel the warmth of this site and am glad I am here. You are truly amazing people and I feel right at home here with all of you. =]

I took your advise Kari and scheduled a Doctor appointment this Thursday and asked my wife to come with me. She agreed to come along, which made me feel pretty good. I am not sure how she will react to what the doctor has to say but at least its a start. (She was with me at the Mayo Clinic and I think that actually spooked her. I don't think she wanted to believe the results.) I think my daughters are just not use to seeing me in a wheelchair yet. One time we went to the mall and I was in my wheelchair and I think they were a little taken back by everyone looking at me. I think I was too actually. I never realized how different things appear when your on the other side of the chair so to speak. Shopping is not a very fun experience from a handicapped perspective that's for sure but I sure appreciate going to the mall what ever the mode of transportation.

I will definitely take your advise about the exercising but I have to honestly tell you it pains me to do anything slow, especially when considering I use to run a mile just a hair over 4 minutes back in my youth. I was actually doing training runs of 5 miles at 7 minute per mile pace when all this started happening just a few short years ago. My mind still says "yes you can" but my body says "forget about it bub. We're not doing that anymore". Guess I will have to have a "mind and body summit" and come to some kind of compromise. I'll keep you all informed as to how the negotiations go... I think the advise of not demanding too much of myself is a good bargaining chip. Of course I my mind might have to give up a possible "multiple exercise" draft pick but hey, If I can get that John Hancock on the bottom line, I'm happy with that.

Anyway, Thank you all for your love and support. I certainly needed a lift today and you all certainly came through! Aloha for now...

 

[Blubear]

Glad to be able to help hun, just make sure that the doctor knows in advance what you are going through, otherwise he may just say "Hi" again and give you a bunch of pills. Please keep us posted on everything you are going through. You have only been here a short time, but I already care about you! Hang in there!
Hugs, Kari

 

[irismarie]

you know, I think you will find that an enormous number of us here were sportsmen and women...I played squash and hockey at high level and lived in the mountains so I could walk for hours in them every day. It is the hardest thing to become slow and for me to be so much indoors.
But we cannot try to fight against fate - that is a waste of our waning strength, so let's go WITH it like a skier and make it exciting if possible all the way down.........;not so easy in fact, but one can try.
Loads of love to you and your family

 

[halfin]

I am sorry to hear about your diagnosis. Do you think your pain is related to your exercise? If you take a day or two off, do you feel better? Would you describe it as more joint or muscle pain?

I was diagnosed last year and at the time was training for my first marathon (age 53). My first symptoms were in my mouth and hands so I continued to run after diagnosis, did a half marathon a month later. However that burned out my legs and I had to cut way back on my exercise, only 2-3 miles at a time, alternating jog and walk. Then by 2 months later I was not even able to do that. I started walking with a cane shortly after. Ironically my mouth and hands haven't gotten that much worse, it is mostly hitting my legs now.

Last week I got a small battery powered wheelchair and I've been using it some around the house, it is very relaxing. The chair is relatively lightweight and my wife can put it into the car. We have gone out shopping a couple of times using it, and I agree that it takes some getting used to. Now I really can walk OK with my cane, but Saturday I had to go about 3/4 mile and I was dead tired afterwards. My legs were exhausted. So the chair will be useful for longer distances. Still in my own mind I don't feel like I "have to" use the chair, I could get up and walk if I wanted to. This makes it a little easier for me to accept. I agree that in some ways it is harder for family to see it. My daughter lives in Denver and I know it will be hard for her to adjust to when she visits.

Back to the pain, I get some joint pain but not too bad. Range of motion exercises are supposed to help. You should get a physical therapist to show you what to do. I haven't had muscle pain except when I overdo it like I did Saturday. Some cramping but I can usually stretch it out right away. I have found massage is helpful too.

Welcome to the forum, it has been so helpful for me and I hope it will be for you.

 

[irismarie]

I agree. Any exercise at all (like going shopping in a wheelchair, pushed nearly all the time:-( ) .I have pain afterwards and am completely whacked

 

[hopingforcure]

LM, I agree with another post you mad before, so many of us were very active, high achievers. Definitely now exercise is living for me. I was a fitness instructor for over 19 years, everyone always calle me the energizer bunny, had not a clue how amazing that ride was. Now is focus on every thing I can still do.. I am forever moved by the strength of Pals and Cals alike. A entire new Strength..

 

[Zaphoon]

No matter how much I stretch, my cramps won't go away. The switch stays on. Push=ups are an impossibility but this is due to atrophy problems tied into frozen shoulder syndrome.