Any suggestions for dealing with pd


#1

Hi need advice not been on here for a couple of years my husband has pd he was diagnosed 3 years ago at 47 years old and still finds it hard to come to terms with.  At the moment he has a tremor in his left arm movement is slow he doesn't use his arm all the time it freezes at times as well ,he walks with a limp on his left side as well but to him he says he struggles and feels self conscious when he's out .  He gets muscle spazms in his arm he says it's like permenantly clenching his fist and his arm aches the meds he is taking don't seem to be doing anything he's on ralgastine tryhexifendal requip xl and antidepressants .  At the moment he's got his body clock wrong way round sleeping during the day awake on a night . We have just become grandparents for the first time he cannot be positive at all he thinks he won't be able to do things with our grandson ,he is so tired when he has to go to work because of lack of sleep he doesn't go he's self employed before he was diagnosed he had a cancer scare  and he said he could deal with the pd but it's been so hard if he had his way he wd stay indoors he tries so hard things are difficult at moment how long does it take to come to terms with it he sees no future gp are rubbish not getting much help from consultant sorry for going on just needed to write it down does any one else feel like this ?.  


#2

Jo, I'm really sorry to hear of your and your husband's problems. I know you know there are no easy answers and that everyone's journey through PD, whether as a carer or a PwP, is different. I remember feelings I had - useless, no point in having me, downhill from here, tired tired tired. And by your account i am less affected than your o/h. So to feel as he feels sounds to me pretty, well, normal. How to help him see a more positive side?

It's a pity you're not getting support from your gp or neuro. Usual question: do you have a Parkinson's nurse? That may be a way in. I'm wondering whether your o/h may be depressed, and may benefit from treatment? Or whether his meds need rebalancing? How are your children (esp the ones with the new child) taking it? They can be a real help, too.

And btw it's OK for you to rant. That's what we're all here for (to rant or to listen).

Hope this help, if only a bit.

Best wishes

Semele


#3

Welcome back to the forum Jo.  I`m sorry you and your husband are having such a tough time.  I wonder whether your GP would be willing to refer you to a therapist who could talk through the pd issues with you both.  It can be very helpful to talk to some-one not connected to the family.

I guess not just your OH but you too are very tired with his body clock upset.  I find that it helps if I have a nap some afternoons and then I often feel so much better I can catch up with chores and think more clearly.

As regards doing things with your grandson - I expect he`s forgotten a lot of what he did with your own children.  Maybe he only remembers the very active things like playing football, teaching to ride a bike.  But that`s what dad`s like to do and so grandad must give way and do grandad things like listening and doing the more sedentary things, growing something in a pot, playing pat-a-cake, telling stories about when I was a small boy, when your mum/dad was small.

There are websites that can remind him about a baby`s development and appropriate activities. 

Do take Semele`s advice and see if you`ve got a Parkinson`s nurse.  They are a great source of comfort and advice.

Hope things improve soon and do keep in touch.


#4

Hi jo, sorry to hear that things have been tough lately.

I just wanted to pass on some info about taking beta blockers (e.g. propranolol) for anxiety. They have been recommended to me by a friend who swears they turned his life around, and might work better than the antidepressants for your husband. Ask your GP about them next time you see him/her.

Take care and all the best.


#5

Thanks sheryll  yes things have been hard recently will mention that next time we go my husband  buries his head at times doesn't want to know all the in and outs of pd the future scares him . He slept better last night I feel as if I'm at him all the time but don't meen to , he feels as if his meds don't do anything for him ,he won't push for things I know it's hard for any one with pd but it's hard for wife's as well xx


#6

Hi hat knitter 

he does have a pd nurse in 3 years we have seen her once in January she changed his meds wanted to see him in 3 months were still waiting for a letter it's not on it's the stiffness in his left arm and cramps which new meds are suppose to help with don't seem to be doing much he's only 49 so he wants to be able to be active with our grandson my husband is a strong person and won't give in at all . The tremor drives him mad he wishes there was something to stop it but the tryhexiphendal doesn't do much and for our gp he told him in 14 years you will be shuffling about and falling over so we have not had much support at all . He was told he had pd and basically go away and deal with it shouldn't treat people like that .sorry for the rant just feel angry for him at times he can still work but I worry about when he has to stop working but he won't give up easily financially etc x


#7

Hi Jo H

It is difficult for all concerned in your family..  I have Pd and try not to think to far ahead and just go for what I want to do at this moment in time.  It is only mild at the moment but that is not too say that I do not experience things happening to my body and any thoughts of the future are scarry.  But you are obviously having a very difficult time the two of you and the rest of the family. Unfortunately there is no magic wand but we do have hope and we must grasp that with both hands. I had a brother, not with Pd who became a paraplegic at the age of 39 and he always said he stopped living when he lost the use of his legs and he did. Which was sad to see. But fortunately none of us know what is in store for us. What I found hard was my husband by nature buries his head in the sand and pretends it is not happening and wouldnt attend the consultations with me.  I had to be strong and just tell him that he needed to get involved in order to understand the disease. He is now trying hard, and although he doesnt talk about it I feel he is there for me.

I hope        I do not sound patronising.  i suppose what I am trying to say is we all in our own way have some understanding of what you are going through.  I hope that it helps.  Keep in touch.

Keep posting am sure you will be able to get comfort and help from somebody

regards

Astoriasis

 


#8

Hi astoriasis thanks for your kind words no I don't think your been patronising I understand what your saying we have to try and live each day as it comes hopeful our grandson will give him the hope to look to the future what ever it brings they say his symptoms are mild at the moment  sorry for going on but he will not come on to the forum x

 


#9

Hi jo h,

       Your Husband is exactly the same age i am.I was diagnosed aged 45 in 2009.It is good you are so supportive.There is half the battle won.I have a lot of the same symptoms.I am right side affected,right leg drag,tremor right hand,writing awful(if not on meds or wearing off).Lack of arm swing right.

        I have Three Grand children,eldest 6 years old.I was at the park with him and his younger Brother(aged 2)the other day.I was playing football with them.You would not know i had pd.Another girl in the park was astonished when i was called Grandad.You are as young as you feel.You can also be as parkinsons as you feel.Parkinsons will not stop your Husband from being a Grandad,it could even give him more time to spend with and appreciate your Grandchildren and how un judgmental most children are. 

        Ironically,i also had a cancer scare before my pd diagnosis,so when pd was diagnosed,it did not shock me the same.Cancer i feared more.To say things have been plane sailing would be a lie.We all have our individual issues and problems.I have depression(many with pd do),like your Husband,amongst other things.There will be many ups and downs,but parkinsons is not life ending,it is just life changing.That is coming from someone that writes some of the most miserable poetry on here.There again,it is my own way of"letting off steam".Hopefully you and your Husband will find yours.

         You will find hours of reading,no,make that weeks on here.Plus plenty of advice.

             I wish you both,all the best

                  Take care

                       Titan 


#10

Has your husband considered Conductive Education to help him overcome his difficulties and help him lead as near as you can get to a 'normal' life? 


#11

Thanks for your kind words Titan your symptoms are similar to my husbands do you get cramps and only can explain it as all his muscles in his arm feel as if his fist is clenched all the time even though it isn't clenched at all I've tried ringing his nurse specialist she has rung back but he won't answer his phone he buries his head in the sand he won't try to help his self . I get so angry with him at times . Sorry for moaning again x


#12

Hi jo h,

    I tend to get cramps,hands or feet more so when i am doing anything physical.For example,using a screwdriver,walking any distance.Sometimes i will get cramps in feet at rest .What tends to happen with me,is the toes on my right foot curl under,this causes cramping.I don't even realise it until the discomfort hits.My tremor gets worse in anxious situations,or on physical exertion.Before my diagnosis i had Two frozen shoulders and could hardly get out of my armchair.My medication helps to control all this.Allowing me to function without most people noticing i have parkinsons.I have my own exercise routine and jump in a swimming pool and reel of a mile at the drop of a hat.Finding the right medication is extremely important.

   Many pwp prefer to avoid forums,for fear of reading what they don't want to see,others want to know,so they can adjust and address and adapt their lifestyle and future.I prefer to know all,it sounds like your husband is in the avoiding category.This is when supportive partners like yourself visit the forum,to learn and help overcome the obstacles with any degenerative condition.It is your life which is affected as well.You both can gain support by visiting here. 

                                   Take care

                                      Titan


#13

Hi there, haven't been on for a very long time.  It is now three years on since my husband was diagnosed at 52.   We have alot of bad days and not so many good I'm afraid... He is fine physically, still plays football twice a week when home, goes to the gym most days and takes the dogs on long walks he also still works offshore and has been told has a job for life and if he gets worse he can work onshore.  However, the problem is my husband has Crohns Disease and had a Rodent Ulcer removed from his forehead last year, however, he thinks every little ailment is life threatening.. He is always looking for the worst outcome, if he has a new spot (which are frequent as he perspires quite alot) an ache from the gym, or his urine is dark because he is dehydrated he makes it into a big drama. He has been tested for absolutely almost everything, we have been to specialists through the NHS and paid for them privately aswell, and has been told he does not have skin, kidney, bowel, lung or any other cancers but he is so insistent that there is always something wrong, he is also not convinced it is PD he thinks he has motor nuerone!! He has been for counselling and we are no further forward we are looking for a CBT Pshycologosit just now... My question is, is this it forever forward, the minute he gets up in the morning to the minute he goes to bed he will ask the same questions over and over, his answer is its understandable. As his wife I sympathise and understand to a certain degree with the once outgoing bubbly man I married to the so insecure needs reassuring constantly person I am living with.  He says all he needs is reassurance, which he gets but doesn't believe a word we say or any doctors tell him, he will give himself a heart attack if he goes on like this.  He only has a very slight tremor but it becomes very obvious when he is anxious and at the moment is constant. Maybe hypnosis is the answer..... I have had the depression tablets and actually went for a weeks holiday alone recently (well to see my daughter as she was in OZ with her work) and that is where she was born and I grew up, and when I got back I felt I could tackle mount everest and all would be great..... Well 6weeks later and i feel like I did when depression hit and I can't seem to pull out of it.... We don't have conversations anymore, its all about my husbands ailments and what he may or may not have... He doesn't ask how I am getting on or feeling, if I am having a conversation with our kids he thinks its his god given right to butt in without saying excuse me... he has become the most selfish and self centred person I have ever met and he never used to be like that.  Don't get me wrong he is a man and that comes with its own pitfalls lol but I am at my wits end on how to tackle it from here on in.  I'm sorry to have written a long winded letter, but nobody else seems to understand what I and (we) are going through. I did think that after 3 years we would be past the hard part of acceptance/denial etc, but everytime things are looking up its like 10 steps back..... Any other Carers/Partners have any suggestions, because at the moment I feel like walking away..  Linda


#14

Hello My Life

This is really tough on you both, and I'm afraid i have little experience to share with you. But I saw you'd posted this elsewhere, so I wanted you to know that people are reading it.

I know my behaviour changes have been real, and quite alarming to me. i can get rude, sarcastic and of course take it out on my o/h, so I can see some of your husband's behaviour. I wonder also whether the PD meds are contributing, eg to OCD behaviour? And of course depression is a symptom of PD.

But if I was caring for all of that and more, I too would be in my own states of depression. I think it's hard on family carers - you're supposed to be able to cope with all the responsibilities, and yet you can't walk away from the emotional burdens as a professional does. I sometimes say to my partner that it's not me that has PD, it's both of us. If that's the case, then I wonder if counselling together, other treatments eg for depression together might help?

I hope this helps, and that both of you start feeling better soon.

Best wishes

semele


#15

Hi jo H

I hope that you coming on the forum is helping you.  My husband is also a sand dweller and always has been.  I am the one that feels better if I can sometimes talk about things.  At times for us it has been problematic in the past especially when he was diagnosed with a lymphoma.  The mortgage had to go in my name so whether I liked it or not I had to work full time with two small children, 13 months apart.  Fortunately once it was removed nothing else happened but the mortgage thing remained.  And the black cloud lived with us for a long time.  The fear of the unknown.  And that is how it is for people with Parkinsons, so that fact that your husband appears  depressed is not surprising.  But the only way forward is to accept and get out of life what you can and that includes you. Unfortunately everything in life takes time. Sometimes I think it is like a bereavement, your husband is not the man you married and he knows that and I suppose all of us go through the stages of bereavement in one way or another.

Lifes a bitch at times, isnt it.

Warm regards

astoriasis


#16

Thanks for your kind words semele xx

 


#17

Hello J h, I'm sorry to hear that your husband isn't coming to terms with his condition, its different for all of us and on this basis it's hard for us to comment on how long it might take him. I've been diagnosed for 12 years now and I still enjoy life to the full, yes I have some days when I am worse than others, but isn't that true also for people who don't have pd?

What I can suggest is that your hubby go to his GP or neuro and ask to be prescribed amantadine. I suffered for almost a year with terribly painful dystonia in my arm, I was eventually prescribed amantadine, it took a few weeks for it to began to ease the painful muscle spasms but it worked and I now take it twice a day, no more dystonia!!!

It might be useful if you could locate a local support group, where you will both get support.

I hope this might be useful for you, welcome back!

regards Glenchass

 


#18

Thank you to all your responses the parkinsons nurse rang last week asked about his symptoms told her about the muscle spasms in his arm and cramp she told my husband it was parkinsons .  Then she asked me about his medication he takes 6 mg trihexyphenidyl  6 mg requip. 1mg rasagiline 10 mg citalapram  he didn't seem to be as bad with cramps until they put him on requip could it be because the dose is too low .  She is speaking to his specialist and going to ring us back hopefully this week why do things take so long .


#19

I hope some one as can help my husband is taking 6 mg of requip xl since January  now his left arm cramps a lot more and is more painful and stiff could it be a side effect of the requip making it worse or could he be under medicated still he was told he was back in January when we saw nurse specialist. We're still waiting for her to ring us as she is speaking to his specialist 2 weeks later he needs help .  Don't know if he's on  right medication or does it need tweeking they are really slow it's a persons life there messing with.  We have even tried deep heat etc  he also takes 2mg trihexiphendril 3x daily  1mg rasagiline  things seem worse 

 


#20

Hi Titan

Havent seen any of your posts for awhile really liked your avatar.  Is it your own work.  Did you submit it to the Mervyn Peake Award.  It certainly looks like control. Please dont think am being nosey.  Well I suppose I am but if it is your own work KEEP IT UP.

Regards

Astoriasis smile