My husband, who is 69, has been referred to a neurologist by the GP and also for a scan. This was on 12th December and, eight weeks later, he’s still waiting for an NHS appointment. He has had symptoms since 2021 and been tested for everything under the sun - all negative. His grandmother had PD. I just feel things would be easier if we did have a diagnosis - then I could at least explain it to the family and have their support. At the moment, I feel totally alone with it. It took me months to persuade him to see the GP and he really played down all the symptoms. He can be very stubborn and doesn’t see the effect it is having on my own health (mental and physical). He is a very private person and does not want me to tell anyone what is going on. He carries on as normal, most of the time, but the back pain is having an effect on our daily walk - which we always enjoyed. He can be very snappy with me - and - then blames me for everything! It’s an absolute nightmare at times and then things go back to normal for a while, I get my husband back and I begin to think I’m imagining it all.
Anyway, I hope you’ll find some comfort in this group. I joined some months ago but, sadly, didn’t get much of a response! Good luck with it all. X
So sorry you didnt get much of a response before. I do find this forum can be a little slow with people coming forwsrd to chat.
I could so have wrote what you have posted this morning.
My husband was having worsening symptoms during lockdown. His refferal was so slow in coming so in the end my husband went private to get his diagnosis. That was a quick 30 min appointment cost around £250 but worth every penny to get the diagnosis.
He too was grumpy and snappy but all part of PD I now know. When you have a diagnosis it is easier to understand.
Maybe your husband doesnt want to tell anyone because it would be admitting sonething is wrong, something he doesnt want to admit to.
It does effect your mentsl health too but they dont always kniw that,they think it os just effecting them. Im sure he isnt doing it knowingly.
My mental health was awful before diagnosis, knowing something wasnt right with him. It was torture and all guessing games. Oncecwe got the diagnoses it was a big relief to some degree.
I am here to chat more if you want to. X
I have just typed that without my glasses so please excuse me if there are many mistakes.
I’m having a bad week. Watching my husbands condition deteriorate quite a bit in the last 6 months, I know everyone’s progression is different. I also know much of what might happen in the future. Most days I don’t think about it. Today is not a good day. I feel weepy and alone. I’m not alone, but I feel the burden is mostly on me. I feel guilty for this self indulgence, as its hubby’s day to day life that’s altering the most, but other family members don’t want to hear the bad stuff. I’m sure many of you will understand, I’m not even looking for advice. I just need to say out loud I feel down
So sorry. It is a beast. It affects us as much as our husbands, even if in a different way. Nothing we can do but grit out teeth and carry on. Be kind to youself. Weep if you want.Xx
Hi Ladies, just joined the forum although my lovely fit husband has had idiopathic parkinism since his diagnosis in 2019. We have only seena nueologist 3 times. The parkinson nurse rang today to apologise as she hadnt been in contact fof 2 years. Cut a long story short my husband st a rted having terrible pain in his shoulder and his feet we used to walk miles and the pain was bad so he coul d nt walk. Eventu a lly late 2018 i got him to see the doctor who told us he thought it was parkinsons and referred us to a neurologist in 2019 he was put on sinemet which was when things wen t from bad to worse the side effects were horrendous headaches so bad he had a prescription for 100 paracetemols a month plus codiene then rotogotine patches for the restless legs that burned his skin then upped the patches to 2 mg that burned even more tremor was much worse. Consultant then took hom offthe patches when i said he was much worse on the medication the consultants exacg words were "there are no side effects with sinemet hes under medicated and prescribed modopar to take with the sinemet. We had 2 weeks of hell then decided to come off all the medication slowly unknown to the nuerologist. Husband has been off all meds for almost a year and although its left him with tremors now in both hands and fatigue he sleeps like a baby which means i do too no more hullicinations and screaming i his sleep no more restless legs and no more constant headaches. We signed up fof the cue 1 from charco and had ours delivered in person today so will be trialling it for 3 months, watch this space. Thinking of all of you with lovelg hubbies suffering this awful disease
Hello, new here. Hubby (66) has just been diagnosed. He is still in hospital. Been there nearly 6 weeks. Disgnosis has come as a huge shock to us both. He has been ill for around 6 months, but has other health conditions which may have been masking things. He has aspergers so am keen to connect with anyone else who has a hubby with the same. He is struggling to accept the PD diagnosis, as I think I am too.
He started with tremors & trembling around 6 months ago, then shuffling around and it progressed until by Xmas he was unable to dress himself, get in or out of bed or even walk at ll. He fell over 3/4 times & I struggled to get him up as I have my own serious health issues so finally I had to call an ambulance and he was taken to our local hospital and then transferred to the mainland (we live on a small scottish island) and he’s been there since 9th Jan. He has a CT scan, an MRI and some sort of special brain scan and the Consultant said they were all inconclusive but they have said he has Parkinsons and have put him on some drugs. I have been unable to get much info as I am housebound so cant get to visit him and have found it hard to get much info from the hospital. He is really struggling to cope and his mental health is very fragile so I have no idea what state he is going to be in when they finally let him come home. He is still unable to walk unaided but has been having physio to help and is now using a zimmer frame. No idea whn he will be released. Because of his aspergers he is reluctant to ask or accept help so I can see the future being a real struggle as it has been for several years because of my ongoing health issues. We have always looked after each other but now neither of us can look after ourselves let alone each other. It is going to be hard to get him to accept help but I can’t cope anymore.
Hi Butekaz, I truly hope you are getting, or will get a lot of help and support. You will both need it, and sometimes you have to keep at the doctors and nurses to ensure they take notice. I’m sure you will be entitled to assessments of both you and your husbands needs, I can appreciate it might be even more difficult for you living on the islands with less resources. I find this forum very helpful for emotional support. We all have our good and bad days. I hope your husband is home with you soon and you can start to work out a plan to help you cope with the day to day problems this PD places at our door.
So next week (age 43) I am having to have a hearing test. R doesn’t believe that he is a lot quieter and mumbles so I am hoping that this will show that it isn’t my hearing that is the problem. The things we do!!
Well I can not tell you how proud I am of my husband. He has gone from being diagnosed with PD in November 21 age 53 to yesterday walking Snowdon without any problems at all. We had the most amazing day and feel a massive sense of achievement.
Hi Lizzyg, that’s great to hear and I’m really glad your husband is doing so well. My husband has PD, diagnosed 7 years ago at age 65, but has likely had it much longer like most. In the first few years he still managed to keep on working a couple of days a week and we carried on much as before. We were both avid hillwalkers and our pre-Parkinson’s days were spent every weekend in the hilly regions, mainly walking in Snowdonia, with Snowdon being one of our many mountain hikes in that glorious area, whatever the weather! Halcyon days indeed… My advice to anyone is ‘This is as good as it gets. Do it now whatever that may be!’ I’m so glad we did, and have such happy memories especially as things have sadly started to slow down. I wish him many more enjoyable treks. That’s the spirit! Best wishes, Jean
Hi Jean, thank you for your kind words.
I totally agree with what you said about do things now whilst you can. I think that goes for everyone with or without parkinsons, none of us know what hand we are going to be dealt with on the health front.
Hi my husband was diagnosed in 2021 and a couple of months later with dementia with levy bodies. I would be happy to chat to you. I am finding it very difficult and very lonely
Hi everyone, my partner was diagnosed Jan 23, so fairly new to forum and haven’t been on here for awhile.
He is ok at present and has started swimming twice a week which has helped his tremors but I’ve noticed they are a little worse this last week. He is not on any medication yet and doesn’t see the Parkinson’s nurse until November.
My question is really to westpest, as I have never heard of dementia with Lewy bodies. Have you any info please. I have noticed a marked change in my partner’s cognitive behaviour and even in his personality. I have been worried that it could be dementia but not sure what to do.
Many thanks jules
Hi, hubby diagnosed April 1st, of all days, and is on Madopar. Some slight tremors, writing deterioration and shuffles, rigidity makes it hard for him to walk far. We too used to run and walk loads, hey ho. The worst is his fatigue, but I’m quite independent so happy to read, garden or pootle about on my own.
Oh, hubby is 60, is also on heart meds after attack 2 years ago. He still manages to work full time (with 2 days from home) and OH have been great for him at work.
Like others, he tries not to read about it, but I need to know what I’m dealing with or I’d explode.
Am in West Yorkshire
OMG - just read my last comment. I meant to put I am hoping that it is my hearing that is the problem not isn’t Interestingly, it is my hearing. I can hear high noises well (which is good working in schools) but not low noises which is why I struggle with R.
Hi Lizzyg, yes my husband was recently diagnosed and the first thing I did was tell everyone, with his permission, of course. So, if he has a memory lapse, or something, they will understand. His short term memory isn’t so good, and I am not sure if that is PD or the medication, so I have started to write everything we both need to know down so he can keep an eye on what is happening. It is scary, our GP was useless, and we went private in the end just to get a diagnosis. Yes, we got the diagnosis, my hubby was put on medication, and 6 weeks later, in the shortest consultation on record, his dose was doubled. He has no idea what to do, or who he should contact. Someone said he should have a Parkinson’s nurse, but nobody from our surgery has contacted him. He has never been a joiner, so he doesn’t want to join a local group - what to do? All we can do is be there for our husbands / partners and be positive.
Hi Essexlass,
Welcome to our community forum. We recommend reaching out to our helpline, as they specialize in helping folks find local resources, including medical assistance, which sounds like it could be valuable to you. They are on 0808 800 0303, and are always happy to help.
With our warmest welcome,
Jason
Forum Moderator
It is so difficult at the beginning of a diagnosis when you are not given any information that can help you, it seems you have to do all your own research. The helpline us a good place to start though, vedy knowledgeable people on the other end of the phone.
Please come back and chat whenever you need to. Xx
Hi @Essexlass What part of Essex are you in? In West Essex you can self refer to the Parkinsons Nurse service. I did this after my consultant had forgotten to do so and have found the PN incredibly helpful, especially at the moment as I was ditched by my consultant and the new one has a 40 week waiting list.
