Silently Worrying

[Gracie]

Hello my friends,
Well this has been a bad two days at our house. Monday we go back to Neurologist for the 6 month evaluation. My husband seems very, very fearful. He knows how much he has progressed in the last 6 months and he seems quiet and grouchy. The diagnosed before was PLS but I know that he knows things are moving very fast. He said he is not going to let the Neuro do another EMG, he said (WHY DO ANOTHER EMG, I KNOW I'M WORSE). I feel his anxiousness and his concern. When I watch him (concerned for him falling) he say's stop watching me, when I try to discuss how he feels he says it depresses him. So I try to help when I can but I think when I do it only reminds him of his physical helplessness. This terrible disease is so unfair, relentless, uncaring, depressing and debilitating. I will talk to the doctor on Monday and tell him I think my husband is getting depressed. This I am sure is very natural, it even depresses me. I am sure you all know exactly how we feel and I am sorry for that. We are very good people and have tried to be all our lives, everyone say's things happen for a reason and I just wonder sometimes what the reason for this could be? Thanks for listening. Gracie

 

[zaff4444]

my beleif is that,in the next life we will be very lucky, unlike the daily health and financial struggles we are facing in this present life while we are ill.

 

[olly]

gracie

sometimes its just as bad for loved ones as those suffering from mnd,the helplessness,anguish,depression is felt on both sides. i know i get bad tempered if i can't do what i want to do and it makes my son anxious and upset as he wants to help me but i just want to do a job for myself and i hate relying on him.
it is depressing when you are walking down a street and a little old lady overtakes you and is at the bottom of the street when you are only a third there,especially when your son thinks its hilarious lol.
losing your independance is a terrible thing and you go through a grieving process,which i suspect is what is happening with your husband,this is natural.
i do hope everything goes ok for you both on monday,i really hope the emg is ok.
you both will be in my thoughts and prayers over the next few difficult days you have ahead. godbless you both.
caroline

 

[Kenny H]

Gracie

I know how your husband feels. The PLS diagnosed is bad, but we all know the alternative. The fact that sometimes, PLS morphs into ALS, is scary. I think about it often...especially when I get fasiculations or feeling worse. One of my neurologists did tell me, though, that ALS does not always perform like the stereotype that gives us all nightmares. It sometimes is slow and the symptoms are not as severe. He may want to see a counselor or perhaps log on here. Many of us can honesty say to him, "I know your pain". I am 54 and have been with symptoms for almost 4 years. Have him log on!

Kenny

 

[Gracie]

Thanks Caroline and Kenny for your encouragement. Like everyone else we have good days and bad days. My husband is certainly unhappy about how his health has deteroriated and it does take time to except the cards that have been dealt to you but this is a hard pill to swollow and a constant reminder of how life just slips away. I doubt that he will have the EMG on Monday (that will probably be scheduled) but I'm not so sure my husband will have it done as it may just confirm what he is already thinking. I print other comments posted on the forum for my husband to read and he gets so depressed just hearing other people are suffering as much as he is, so I don't try to push him further, we are both extremely private people, but this forum does help me cope a little and talk about this without depressing him further. Sometimes I can't even enter the forum because I am already too depressed. This is the most difficult time of our lives. When people without ALS/PLS try to make you feel better and say things like (well, at least your on this side of the grass) I would like to slap them because nobody knows just how difficult this disease is and all the baggage it brings with it 24/7. Sorry I am such a downer but it is what it is! Thanks again, Gracie.

 

[sral]

Gracie,

I can totally understand. My mom's 3 mth appointment was in March and she was so visibly stressed over it. She told me she did not want to go and because I knew that there was nothing the neuro could do to make things better then I decided to forfeit the appointment and cancelled it. What would have been gained from going is learning that she has progressed ... well I don't need the neuro to tell us that, we can see it.

There was nothing to be added but alot to be lost (by the added stress).

The rescheduled appointment is this Tuesday and I don't think she'll want to go.

GOOD LUCK!

 

[Kenny H]

Gracie

I know that as the spouse, you have the toughest job of all. Be strong for him while you silently freak out. My wife worries about me and loses sleep. You really never got into detail about your husband's age, symptoms, how long he has had them, etc. Perhaps that would be helpful to see his experiences compared to others.

 

[olly]

gracie/sral

i understand your husband/mother not wanting to see there neuro.
my progression was fast the first few years but slowed down, now it has sped up again and is causing me great distress, my neuro has more or less said there is not much else he can do as i am on maintenance meds so it's all down to the neuro rehab doctors and pt's to keep me going.but i have had this 9yrs and only 40yrs old,your husband/mother are older and are below the recommended 5yrs so it would be wise to have the neuro follow the progress more,but then again if there is a progression to als it will be more obvious in time.
god bless you all
caroline

 

[Gracie]

Kenny,
My husband will be 62 yrs old in June and was diagnosed 2 yrs ago with PLS. Some say yea, some say nay? Began with clonus of rt foot, Babinsky right knee and right leg weaknes, 2yrs later progression seems onward. My husband also now has Babinisky left knee and some clonus left foot. Leg weakness in both legs now and his balance and mobility is terrible. He sometimes finds a problem with his right thumb and finds it difficult to write. He always had beautiful writing and this is very disturbing to him. He finds now that when the weather is cold and wet out that his legs and knees are very achy and he can hardly get around, he is taking Bacolfin and Celebrex.

His biggest progression has been in the last 6 months since he saw the Neuro last. Last year we were still bike riding 8 miles a day but now his balance is so bad that the second time out this year he fell and now I think he's afraid to get back on the bike. His biggest problem now is getting on and off the bike (balance issues). He tries to hold on to something but still has a big problem. Also when he walks he often will skuff his foot and then of course nearly falls. He tried to golf this year (last Friday) and was really concerned if he would be able to keep his balance or not, well he fell backwards into the motorized cart and his back has been hurting him for a week now. Very sad! Gracie

 

[kevinw]

Hang in there Gracie, I don't really know if I'm any position to judge how a spouse is "silently" feeling. I suppose when my walking and balance is poor, or I catch myself from falling, that my wife is probably feeling as you do. For some reason I am just not sure I relized it until I read your post? There are times I stumble or scuff my foot and have "close calls" and I laugh it off to my wife, but maybe it is affecting her just as much emotionally as it is me physically? Maybe I wish she would ask more questions, although I'm not sure how to answer them.

Anyway, bless you Gracie and your husband and try to stay positive.

 

[Geo]

Gracie I was an accomplished water skier, i use to shoot 86-90 in golf from the white tees ,cant do none of that now ,so i garden and shoot a mean game of pool hobbling around that table . Im 8 yrs. in now . i was devistated ,but i decided to fight and not be a quiter . I will do what i can and will try to beat this ,i may fall and i may not be great but i'll do the best i can . I think many of us ,if not all felt like our lives were shot . When My wife would leave for work i had days i cried alot in the beginning . Then i made my mind up to do what i can . This is not easy to take . I told her that if i hold my hand out im asking for help ,but please let me try things and let me fail ,but just be there to help me up . If you take someones pride away they have no reason to live . So try to let him have some pride Let him fail and cuss alot . Geo

 

[hopingforthebest]

Dear Gracie

I know everyone is trying on this wonderful forum to help you, but I must disagree with the falling part. Maybe they were just using falling as "let him try" himself first. But reality is, should he have a bad fall, he can fracture something and it would make things much worse. I work for a neurosurgeon and have seen awful injuries to the spine with falls and head injuries even worse.

My husband too was very athletic, avid bike rider, diver, worked out 5 days a week and ran. The first thing our neuro told him is absolutely no free biking. Stationery bike ok. The problem with my husbands form of ALS, PMA classification, is that it started in upper body and arms would not ever be able to get up fast enough to break his fall.

The hardest thing of this stinking disease is the patient giving up their independence. My husband, 58 yrs old, feels so bad that he cannot help me at all. He has finally had to stop working and is on hospice, right now for help with care issues.

Wish you had someone to talk to Gracie besides the forum. I found a woman, actually she found me (via a friend from church), and she lost her beloved husband a few years ago to ALS. She has been so valuable to me. We chat when George is not around and her advise has been a God send.

Something I started with George was renting movies from the Netflix. I choose movies that he would love (all guy shoot em up ones, etc.) and I surprise him and sit and watch with him. He was so active prior to this and I am at a loss for helping him. I try my best and do it with a smile and cry my eyes out every morning while he sleeps, when I am in the shower. It helps me.

Private message me anytime and I would be glad to talk with you Gracie.

Patty

 

[Gracie]

Thanks to all of you and for really good advice. I guess we are all in this together with good days, bad days and just praying for strength everyday. It just blows the mind to think that there are so many people out there with the same problem and the same pityful answers from the medical field, SHAME ON THEM! Most of the time it just feels like you are sitting on a keg of dynamite just waiting for something to happen. God Bless you all and Patty I will contact you, thank you! Gracie

 

[sral]

Dear Gracie,

From how you describe your husband's progression, although it may appear fast to you, it is typical of pls and not typical of ALS. He can still ride a bike but fears he can't balance. PLS causes balance issues so this is expected. If it were ALS, he would not be able to walk. I"m no neuro, but what seems to be happening is that PLS is running it's course. Although things are progressing he can still move every thing - functional but with disabiltiy - is how I think of PLS.

Good luck