Going Downhill

[Tusker1953]

Hi Hope you have all had a good Christmas and New Year. Alan had a UTI just before Christmas and it has brought him down dreadfully. I keep hoping he will improve but he just wants to sit in his chair, his speech has got much worse, he eats very little and so slowly and he doesn't want to go out at all. The OT got him a bed in the living room so now I 'trolley' him around on the ambiturn and now he has a 'full time' catheter instead of the intermittent self catheter. What upsets me the most is that he just seems so disinterested in everything and he is also taking more Madopar (agreed by the neurologist) to control his 'symptoms' when he was first diagnosed with Parkinsons he was prescribed Madopar and frankly it made no difference but he kept on taking them because he wanted the pills to 'cure' him and now he needs these pills to stop him feeling tense and shaky. I sometimes feel that he is more addicted to the drug than the drug actually doing anything for him. My main problem is getting him to drink enough but I shall keep on trying.

Sorry this has been a bit of a moan but I feel that in the space of 4 weeks he has changed so much. Never mind Spring is just around the corner!!!

Best wishes Jan and Alan

[Diane831]

Oh Jan I do feel for you. These patches are so difficult and I remember feeling exactly like that at times during my husband’s journey. Everyone’s psychological and emotional make up is so different and Alan must be struggling as well, but you are right, it may be that spring and lighter days coming will help, and chatting to the MSA Trust nurse or his doctors about the Madopar might help to see if it is now having a more negative than positive effect.

Keep looking for little smiles along the way.

Diane

[Tusker1953 in reply to Diane831]

Thanks Diane I feel better for talking/typing about it and getting understanding replies. Best wishes Jan x

[Hellebelle]

Hi Jan, so sorry you and Alan are going through this. Dad really suffers with lack of motivation. Its very disheartening for him and us as he used to be so interested in everything and everyone.

Every time dad has an infection (chest or UTI mostly) it really exacerbated his symptoms.

I really hope Alan improves and as you say, spring is around the corner with better weather hopefully.

It would be a good idea to discuss the medication with the professionals if you are concerned as Diane suggests.

Sending lots of love

Helen x

[Tusker1953 in reply to Hellebelle]

Thanks Helen it is lovely being able to discuss these things with people who understand and experience the same. Best Wishes Jan x

[Yanno]

Hello Jan

Not the ideal new year for you is it? These ups and downs can be so worrying; we’ve had a couple recently but thankfully okay now.

Diane’s suggestion of talking with your MSAT nurse about Madopar is such a good one. With Jackie we have constantly checked, double checked and checked again that she’s on the right medication. Frequently over the past years our nurse has helped us make decisions to change drugs which has been positive.

Thinking of you, good luck,

Ian

[Tusker1953 in reply to Yanno]

Thanks Ian I shall talk to Samantha. The community nurse has been out this morning as Alan had a blocked Catheter during the night together with a very upset tummy but he is definitely looking better now his bladder is empty. Sorry too much info but there we go. Best wishes Jan

[Yanno in reply to Tusker1953]

That’s the joy of caring for your loved one...thankfully it’s not all bladder and bowels!!

[Diane831 in reply to Yanno]

As you say thankfully it isn’t all bladder and bowels, but life certainly looks brighter when they are in order doesn’t it!

[Derkie54]

Hello Jan,

Sorry about your husband, you're doing the best you can, imagine what his life would be like without you. I find it hard sometimes being a carer and like you I have to trolley my wife around the home although she is not bedbound. The disinterest I struggle with as well, I try to take her out as much as I can but I'm not sure how much she enjoys it as we don't seem to converse that much.

It's nice to be able to talk to others on this forum and I'm sure nobody saw your post as a moan.... as you say spring is around the corner then we'll all have more to look forward to.

[Tusker1953 in reply to Derkie54]

Thanks for replying and I know exactly what you mean about the disinterest and whether he is enjoying trips out. Just keep on trying that's all we can do. Best wishes to you and your wife. Jan x

[Paul_and_Sue_Wood]

Jan

Sorry to hear of your recent challenges and well done you for persevering and letting us all know on here.

MSA has a toll of physical and mental health fro both the sufferer and loved ones. Battling through is a joint effort and we succeed at different levels and rates. The conditions ability to vary in timescale and severity doesn't help resulting in everyone's case is different.

Keep venting and asking for help as the solution is always out there somewhere.

Good Luck

Paul & Sue

[Tusker1953 in reply to Paul_and_Sue_Wood]

Thanks and best wishes Jan x