Sleepy and weak

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1

Hi My husband and I both have Parkinson's, we are both very different with our symptoms, I have been diagnosed the longest, but at the moment it is my husband that I am most worried about. he  was diagnosed 4 years ago.Recently he was also diagnosed with Mild Cognitive Impairment. He is at the moment on 6 Sinermet plus a day. Sinamet CR at night, and 100 mg of Lustral anti depressant. He also takes Ramprinirol for blood pressure.which is now mostly normal, and takes Movicol  a Laxative

We have noticed within the last year from being an energetic man, he has deteriated badly, at the moment he has no energy and is constantly tied, he describes himself as feeling weak and often has dizzy spells.which happen for most of the day. His quality of life is zero as he now does not want to go out at all.and cannot sum up the energy to do anything,although he does try he just finds he can't. At night he needs to go to the loo often then the problem is getting back into bed as he struggles to pull his legs in and then arrange the duvet. He is often uncomfortable because he cannot then move. Quite often I find him in the chair as he cannot make the effort. he will not disturb me as my sleep pattern is not good either

He saw  our PD nurse .who has been very good in trying to help, she has moved his medication around as a trial but at the moment I feel things are going from bad to worse.

Is there anyone else out there with the same sort of problems, or is this the norm for some people to be so weak and frail, I don't know where to go from here. 

 

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Hi Juliet A. I  am sorry to hear that you are having a very worrying time. I am sure that you will get support from Forum members but I think that the Helpline would be helpful for you both. Best wishes.    flo

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Welcome, Juliet A!

Flo is right about the helpline, I'm sure.  Also, keep consulting the PD nurse; it often takes time and many trials to get the right combination and dosages of medications for a particular pwp.  I wish I were knowledgeable enough to offer advice, but all I can say is that on this forum you will find support from people who care.

Wishing you and your husband the best,

J

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Hi Thanks Flo and J, for answering, and for your advice. I am not sure about the Helpline, our PD nurse did say I could speak to her at any time if I needed help, and so I don't feel right about contacting them. I do feel though on times there is  little that can be done , we have tried differant ways of takeing medication but with as yet no change but I am hopeful one day he will feel better.

Thanks again Juliet

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Hi Julia....I really feel for you and i do understand what you are saying. I have PD and was diagnosed in feb 2013 with just about every symptom there is. My Husband became very poorly this last year and presented several PD symptoms like myself, though his balance, memory, and confusion were the main problems his hearing was also badly affected. He had so many tests and we waited and waited eventually we had to go privately to see a Neurologist then an MRI followed and within a few days a Neurosurgeon. I wish in a way it had been Parky but his was a huge Brain tumour and Hydrcephallus, he was operated on within days and the amazing surgeon saved my dear fellas life, he said it had become urgent. The connection is that he has now become so tired and weak, still unbalanced and vacant at times and confused. He gets up so many times for the loo in the night and was suffering bladder incontinence before the op and was getting caught short whilst out. He also has Prostate cancer but they seem to think that the tumour was the cause of his incontinence. I will be talking to the consultant on our visit next month which by the way i insisted on being brought forward from next January!!! as i have been so worried. I will not ever leave anything to chance again, so phone your PD nurse and keep ringing until you get some answers. Make yourself heard........it is so upsetting to see your Husband go through this and the worry does not help you either. I know how the stress of this last year has taken its toll on my health. I wish you both well and let us know how you get on, please.

Best wishes 

Dolly

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Hello Juliet A

I`ve just seen your post where you say you don`t want to contact the helpline because you have a readily available PD nurse.  Please don`t think having a PD nurse means you shouldn`t phone the help line.  It can be very helpful to discuss your problems with some-one else who is knowledgable about PD.  Also, no-one can know everything and the helpline could be offering just the info-/insight you have been lacking.

I used the helpline even though we have a PD nurse and the helpline enabled me to find a better way to express my worries and so we got to the right answer for us.

Best wishes to you and your husband.

Hatknitter.

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Hi Dolly, I am so sorry to hear about your problems too. I feel you are suffering more than any of us, so thank you for the concerns you have for my husband and I. On the advice you have given to me I will not leave anything to chance, he had head scans at the beginning which did not show anything underlying. Just recently he has had blood samples, and water samples tested which were all ok.I think it is terrible you had to go private for your husband but can understand why you did, I could not get a diagnosis as my symptoms were not classic Parkinson's, so I also had to go private.I do hope something can be done for your husband, and you take care of yourself also. I will keep in touch

Regards Juliet 

1 Like
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Hi Hatnitter, Thank you so much for your post, I will definatly keep that in mind, I just thought the Helpline was there in case the Parkinson's nurse could not see him. If things don't improve on the moveing of his medication  I will ring them as you say they could offer something differant.

Regards Juliet

 

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Hi  to everyone I just wondered if anyone has ever been to see a neuro privatly. I have been told recently my husband is on the best medication he can have for his Parkinson's , he is on Sinemet plus and  SinemetCr. My chemist advised me therer are better drugs he could try one called Stalevo, is anyone on this medication?

I feel if we had a second opinion on the medication and told there was nothing better for him I could draw a line under this and do the best we can.

I am happy with the neuro we see but feel it would not hurt to seek another opinion.

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My husband saw a neuro privately for 10 years and got dreadful care....a huge overdose of Requip causing awful damage. So I am not sure a leap into the private sector is the best course of action.

There are many drugs your husband could possibly take, including Stalevo which is Sinemet plus Entacapone which makes it last longer.The regime he is on sounds strange to me but I am not a doctor and each PWP needs individual treatment.

Most PWP are prescribed Azilect in addition to their main meds....it may well slow the progression down.

Perhaps you can approach your Parkinsons nurse who often knows more than than the neuros about medication and tailoring it for one patient's needs.

You can ask for a second opinion and see what advice you get. The helpline can offer advice about how to set about getting the right help.

You don't say whether your husband is experiencing problems with mobility, mood etc. but if he is you need to seek help.

There is good medication out there and you have a right to the best  provision.

Good luck!

GG

 

 

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Hi GG Thank you for your reply and advice. It is strange but both the neuro and Parkinson's nurse will only recommend Sinemet drugs for him. There has never been any mention of any other meds, which I did query but they say he will not benefit by taking anything else.

He sleeps constantly and seems so weak, he is at the stage where he cannot dress himself and it is a real effort to get him to leave the house. He also has problems with his bowels and waterworks.and his mobility is poor.

I think I will contact the help line, I am still not convinced he is getting the right medication.

I will bear in mind the problems you had with private care. It is terrible when you are only trying to do your best.

regards J

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Hi Juliet....i am so sorry to hear that your dear Husband is still not getting the help that he needs with medication, it is such a worry to see your loved one go through this and you are trying so hard to help him and you are not a well person yourself. As i mentioned before, in October my Husband was found to have a Brain Tumour and Hydrocephalus and had surgery but still was weak, confused and tired and off balance. At the beginning of November he collapsed late one evening and as a result  eventually had more Brain surgery when it was found that the fluid was building up on the Brain and causing pressure on the Brain stem and so he is now fitted with a programmable shunt which is a magnetic device inserted into the Brain with a catheter running down through his neck, into the chest cavity and into the tummy. The difference by the following day after surgery was breathtaking, i have my man back and it is a miracle.He is walking with a stick, talking normally, no incontinence, no confusion and brightin fact we had a few days away after Christmas and he managed a couple of slow dance with me......his biggest dream was to get back on the dance floor one day. He can't do turns as he still gets a bit dizzy but still!! 

His new "Project " this year is to battle the Prostate cancer, which he is on Hormone tablets for and has just started monthly jabs. Yep i guess the diary will once again be full with appointments between us but we are enjoying what we can and this has really woken us both up to how precious life is.

As i mentioned before ...if we had not seen a Neuro consultant privately my man would not be with us now....and that is a fact. Though the treatment he had on the NHS was second to none and are so grateful for that. There was an incident whilst he was in waiting for his second op when he was so confused he managed to "escape" from the ward, though he was wearing a green band to indicate his risk of falling, the staff nurse on duty allowed him to leave the ward unaided thinking that he was using the bathroom, (a full stafff were on duty) it was 20 mins before thetnoticed that he had not returned. He was found collapsed in the street with abrasions to his head which meant surgery had to be postponed. Anything could have happened to him and now i have a formal investigation going on through the Chief executive, as i am not getting all the answers through the hospital despite several meetings with the manager. 

Please do keep pushing with getting the right help for your Hubby......and i do wish you both every luck.

Keep posting

love Dolly x

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Hello Juliet A

I just read your post and wanted to say that I originally saw my neurologist privately just over 14 years ago and had all my tests privately. 

I was very lucky to be referred to one of the top people in the country at the National Hospital in Queens Square, London and he asked me to take Stalevo after having  PD for a few years. I'm also on Madopar, Amantadine, Rasagaline to name but a few.

The Medical Insurance Company wouldn't pay for any more treatment as it was an on-going disease but the Professor agreed to carry on with my care on the NHS.

I was told that the Stalevo was very expensive as is the Apo-go which is an infusion pumped into me by a needle that I wear 24 hours a day.  The Stalevo isn't as expensive now as the three year licence has expired so GPs are happier to prescribe it.

Although I still have lots of problems with PD I have been treated very well on the NHS and they have changed my meds to try and help over the years.

All the best

Casie

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My wife who has parkinsons and i went to see a new cosultant that had been recomended to us. It was like starting again he gave her a full examination, he sort of explained that all neuros are very simlar.My wife suffers from low blood pressure so hes told her to monitor it,to check it sitting then standing 2 or 3 times a day.  He also wants her to come off anti depressant because they could also be causing the low blood pressure so we are waiting to see our GP. He also said after trying to sort out this, to up her medication fom 3x 125mg sinemet plus to 4 and see how it goes. I think it is all trial and error when it comes to the drugs !!!! What works for one may not work for another.( my wife was on anti depressants because she was getting upset and weepie )     

                Billywhizz                                                                                                                                                                    

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Hello, Billywhizz --

I think you are absolutely right about the combnation of meds that will work for an individual:  it's a trial and error process.  And although your wife's case may be different from mine, it was one of the medications that first made me weepy and sentimental. Some patients do get true depression with PD; I just found that tears arose ridiculously easily over anything touching or emotional. If my memory is accurate, sinemet was the culprit.  It is so effective in fighting symptoms that I kept it in my regime, but at a very low dose.

My best regards to you and your wife.        J

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 Hi J

              A parkinsons nurse told us that the part of the brain where you lose dopamine is next to your emotional part so we think its the parkies not the sinemet but again it could be down to the person.We may find out in the comming months.My wife has her next appointment with her consultant in 8 months time and obviously her nurse in 3or 4 months

 All the best...                        Billywhizz

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Thanks, Billywhizz -- I hadn't heard before that our emotions might be affected by proximity to that part of the brain.  Very interesting!  Tomorrow I'm going to a wedding, too.  I'd better take three handkerchiefs!

J

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   Take six, large ones J,I cannot escape tears , I weep evry day, my daughters 8yr old Boxer Jasper had to be put to sleep on monday ,he was a big gentle animal who was terrified of cats, even kittens, so when I was informed of his death I just broke up and crashed into black depression,I am a very emotional individual and sensitive to others pain and sadness, ,I often wish I could be tougher and more able to turn a blind eye but that would make me a lesser human being . Juliet I am  one of the very few people lucky enough to have Duodopa I was in very similar distress as your husband and Ddpa changed my life, though It is not a cure and I was informed it would give me 5 to 8 yrs relief from the worst symptoms,well that was almost 3yrs ago and Dds effectiveness is beginning to fade, and I have to back up with MADOPAR capsules, I also take Madopar soluble ,this combined with anti depressant drugs  is pretty effective, my wife wakes me at 5am , I take two Mpar slow release and one soluble ,all are 125mg,they cause terrible nigntmares but at least when I wake Im mobile, .There is another aid I use to help me sleep, and it works, I know it will sound silly, but Im going to tell you anyway, you will have seen the ads featuring the meerecats,well we changed our car insurance and used that company to find the best, and claimed our free OLEG , a young meerecat soft toy, when I go to bed little Oleg is by my pillow, a 64yr old male who sleeps with a soft toy, If he is not there I  cant get to sleep , it works for me perhaps its my damaged brain reaching back to my childhood, when I was safe,and protected, now I am at war every day constantly battling this wicked cruel affliction, it drains my energy and my physical strength, and I have very rapid severe shutdowns, but by adjusing Mdpar intake and boosting Ddopa I can and do winout and send PD back to the depths of hell from whence he came. If I have discovered one thing about parky its this,  there are no two individuals on the planet that have BLACKHEART in their lives and have identical symptoms or identical methods of dealing with parky, for there are no two human brains identical, even identical twins will have miniscule differences and will react to a given situation with a clearly disimilar solution, I am facing my future with trepidation, but I will take what I  know is bearing down on me,    with maximum evil intent, HEAD ON I know of no other techniqe,,                   FED

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Hi, Fed --

It's been a while since I've corresponded with you.  I'll let you know how many handkerchiefs I use at the wedding!  My condolences on the loss of Jasper (also my current dog's name, coincidentally).  My husband and I once had a boxer; they are sweet, lovable and loving dogs.  Ours made it to age 10, but they are not a long-lived breed.

As for the soft toy (or plush toys, as we call them), I think it's an understandable sleep aid.  It's kind of a fictional comfort, an escape into fantasy much like reading a novel or watching a TV show, but with a physical presence.  But, then, I'm prone to overanalysis.  In any case, if it is a method that works and gains you some sleep, use it!

And thank you for your ongoing posts.  I continue to admire the honesty and courage I see there.

J

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cool

      Hello J its always nice to here from you, it always fascinates me that the words I type, will be with you in seconds,you so far away  its one of the better inventions humans have given to the world. Thank you for your kind words about Jasper, he was my youngest daughters and was a lovely good natured dog, Jen also has Betty,a Jackadoodle, cross,she was only a 1/4 the size of Jasper, yet the big dog would always yield to betty if there were dog treats or bones , in fact Betty would collect them all and poor old Jasper just had to  put up with it she (Jen) also has a Border Terrier called Bruce,so she still has canine company, but I miss him.  My life over the last few weeks has been in turmoil,It was my own fault , my dear wife was acting strange and we were recieving  odd phone calls,the person wouldnt answer if I picked up the phone, and a old friend has re entered her life, she gave him the ok to visit, which he did, twice,  but he hardly said two words to me, and would not look me in the eye, it caused a bit of friction for a while J especially as I have  become very jealous, this pointless dangerous human  emotion has returned, I have not felt like this since my teens,,how strange is that, its almost as if my mind is trying to go back, it does not see a bright future so its trying to  reverse, jealousy is destructive J  so I  will reign it in   , I must be  off now J as we are having a family gathering of the  Clan McFeds its all hush  hush, so I cant say nowt, so .

                       Bye for now old friend and have a great year    FED