The feeling that every day is abit worse than the day before

[sral]

Hi,

I was just wondering if any of you have the feeling that every day feels alittle bit worse than the day before. PLS is SUPPOSE to progress slower, but it still progresses. Is the progression noticeable to you on a daily basis whereby you feel yourself abit worse than the day before.

I'm trying to get my mom to take a vacation in December and she is reluctant to go because she says that every day is getting worse. She still has not accepted to use an assistive walking device (cane/walker) and so as it becomes increasingly more difficult to take a step, it becomes more difficult to walk without an aid. I guess she is seeing herself much worse based on the daily progression and refuses to plan a trip for 3 months from now.

 

[jpruppe]

A straight line decline or plateau?

I know what you mean. The doctor at the ALS Clinic told me that ALS usually causes a straight line decline. But then I read on some sites that some symptoms may stabilize or "plateau" for a period.

My symptoms mainly decline, but a few seem to have leveled off. One of the hard things about ALS is that since the symptoms are always changing, it is difficult to establish treatments that will help for very long.

I try to take one day at a time and be contented with what I still can do and not worry too much about what I have had to give up.

I wish you well,
Utility Man, bulbar onset diagnosed April 2008. :smile:

 

[olly]

hi sral

sorry to hear your mum is not doing so well.
pls has a slow progression and symptoms can plateau but there is not any day to day progression.
you can have a period of time when symptoms seem to get worse,or they can be a bit better one day and worse the next.
i think your mum may be feeling like everything is getting more of an effort and harder.
i never make long term plans,you dont know what the situation is going to be when the time comes.
even a day out is very exhausting,even if you are traveling or sat down most of the time.
this makes the stiffness and spasms worse.
dont plan too far ahead,try a odd day out first instead of a long vacation and see how she copes with traveling.
she should really try to get used to the walking aids,it will make things easier.
i know how she feels,i used to hate using my stick and when they suggested a walker i was horrified.
i hope the bad spell she is feeling improves soon.
take good care.
caroline:-D

 

[BethU]

Hi, Sral ... I'm so sorry your mom is feeling that way. I have never experienced that feeling of a daily decline. I know my speech is worse than six months ago, but I can't calibrate the decline exactly. (Except when I think there's an improvement, then I measure it down to the moleculer level!)

Gosh, I wish your mom would use assistive devices to help her walk. I find that I have a little trouble getting up out of a chair now, but I don't know if that's ALS or just being 72! Your mom is also going through the aging process, so she may be feeling a combination of both aging and neuromuscular. But if she could fight the decline ... and with assistive devices she sure can ... she could maintain her functionality longer.

Could you make plans for a December getaway that you could cancel if she's truly not up to it? It sounds like she needs some successes to bolster her self-confidence and take her mind off her decline. Maybe meeting challenges of travel and getting out of her sheltered routine would give her a lift and a new outlook.

I hope you can work something out for her. I think your vacation idea is terrific!

BethU

 

[sral]

Thanks everyone for your responses.

Utility man, I hear you about taking one day at a time. Your attitude is great but it's not easy for all patients.

Caroline, I know that there should not be a day by day decline but that's how she is explaining it. To me, if I think back to how she was last Christmas, then yes I can say she has declined, but from a day to day basis I don't notice the change. She is having alot of difficulty with the pain in her legs that is impeding her walk. They say it's spasms but the balcofen is not working.

Beth, thanks for your kind words. I hear you all about having the flexibility to cancel a vacation. I guess she would feel more comfortable saying yes if she had the possibility to cancel down the road depending on how she feels. The unfortunate thing is that I don't her to be uncomfortable in a hotel and would like to rent a vacation home instead. If these don't get booked months in advance, there won't be anything comfortable left for her.

Anyway, again, many thanks everyone.

 

[Al]

Hi sral. Have you asked about Quinine for your mom. It might help her.
AL.

 

[olly]

sral

i was thinking about your mum today .
has she ever been seen by a occupational therapist in her home?
they can provide a wide range of addaptions to make doing day to day things easier.
they can provide hand rails,raised toilet seat,perching stool so you can sit down to do jobs like cooking and ironing plus lots more and advice.
i have all these ,plus they even fitted a device onto one of my arm chairs that raised it up so i can get in and out of the chair easier.
her doctor should be able to arrange this without waiting to see the neuro again.
i just thought this may help her to cope a bit better.
take good care.
caroline:-D

 

[sral]

Al,

Is quinine prescribed or can I get it at a health store or over the counter at a pharmacy?

Olly,

Thanks for all the tips (and for being aware that she does not want to go back to the neuro). She has a physiotherapist coming over this week. We'll see what she says. I think that the pain specialist may be right and she may have an arthritic condition called 'creptitis'. We get her knee x-ray results this week and she'll be seeing a specialist soon. I think the arthritis is part of the problem.

 

[Al]

In Ont. it's prescription 300mg. You might find something with quinine sulfate in it at a health food store.

AL.

 

[sral]

Thanks Al.

There is something called 'leg cramps' by Hyland that I found on the internet. Have you seen this in health stores here in Ontario?

 

[Al]

No I haven't. I checked the GNC website and they have it for $6.99. There should be a store downtown somewhere near you. They have 6 in Totonto. That product has Quinine in it so may just help your mom.

AL.

 

[sral]

thanks Al.

 

[Gracie]

Hi Sral I feel your pain. I totally understand what you are talking about. My husband is on a roller coaster. One day he feels better and then he tries to do things and the next two days he feels really bad. I am trying everything I can think of to help him and give him hope and then at the end of the day I see him struggling just trying to walk across the room to take a shower and I think to myself he is worse no matter what I do. I would love to take a trip but I know he would not be up to it. With traveling and sitting in a car he wouldn't be able to move so I think why put him through that and I know if it were me I would probably just want to stay home also. I am sorry your mum is struggling and you are a wonderful son. God Bless you, Gracie

 

[BLPhill]

Hi Sral

I am a 47 year old mother with MND. I also feel I am getting worse by the day, therefore I also would not try to plan a trip 3 months away. I would feel like I let myself down or had been beat by the diease if I could not go on the trip.

Although I need to I am also resisent of using a walking device of some sort and I don't know why.

 

[BethU]

Betty ... my husband is the same way with walking aids. (He has Parkinson's) He will use his four-point cane out side the house if he has to, but totally resists using a walker. I think it's psychological ... he associates a walker with being old, not with being ill.

I insist that he use the wheelchair that I can push when a lot of walking is required, as it's hard on me to try to support him on one side while he uses the cane on the other. Fortunately, a wheelchair doesn't have the same psychological implications as a walker so he goes along with it.

My reaction to my ALS diagnosis was to dye my white hair! With my speech becomming unintelligible and my voice getting quavery, the white hair was just too much.

Take care.