First Steps - Has My Husband Got PD?

Hello everyone!

I am very concerned about my husband. He is 69 years of age and has always been a fit and active man. However, since he retired, I have noticed a downward decline in his mental and physical health - which we both put down to low mood and depression as he got used to retirement. He has been getting significantly worse over the past twelve months.
He has got back pain (upper back, between the shoulder blades) which is sporadic and usually comes on when we go for a walk; he can only manage a few yards before stopping and he now walks very, very slowly. He has seen a chiropractor but this has not helped at all. His movement around the house and garden has become very slow and ‘plodding’. He suffers with extreme fatigue and often disappears during the daytime for a sleep. He goes to bed very early and sleeps until quite late. He has some memory lapses and lacks concentration. There are some subtle character changes - he does not like doing things he used to enjoy. He seems to be getting a bit claustrophobic. He is irritable a lot of the time.

He has lost his sense of smell . . .

He suffers with very bad dreams and thrashes about a lot whilst sleeping. He has some problems with things like constipation. His right arm does have a slight tremble when he pours out a glass of wine and I’ve noticed the fingers are curling in slightly (he says this is his arthritis - which it could be)

He is in denial about most of this and just ‘gets on with his day’ - I think he thinks all of these things are just normal aging - but I am the same age - I know it is not just that. A few days ago, I persuaded him to make an appointment to see the GP. Of course, getting an appointment was not easy and he gave up. So, I took ever and eventually made an appointment for him - but this was a phone appointment (even though I tried to insisit he saw the GP face to face).

When the day came for the appointment, I asked him if he’d decided what he was going to tell the doctor - I tried to remind him that any kind of appointment with a GP was like gold dust these days and not to forget anything. At this, he stormed out of the room and told me it was nothing to do with me. I decided to keep my distance and let him get on with it, but I did overhear what he was telling her. He played down all of his symptoms -he said he’d had twinges in his back for 6 weeks! At this, I had to interrupt and reminded him it was over 6 months! I did not say any more. The outcome of the phone call is blood tests (to rule out the ‘worst’ Myeloma) and depending upon the results of that, a referral to a physiotherapist.

I am at my wits end. I know he will continue to try to pull the wool over everyone’s eyes until it becomes so obvious that people notice. I have not dicussed the possibility of Parkinson’s with him - and he has no idea that I’ve been googling his symptoms. I may be wrong - I hope I am. But do I just turn a blind eye and hope this is all in my imagination or do I try to do something about it?

A very worried, wife.

Good morning hennie, just read your post and most of what you describe sounds like my husband pre-diagnosis. But I’m certainly not suggesting he has got PD, but I would certainly advise getting a face to face for a thorough examination. My husband was initially told his tremor could be stress related and prescribed propanolol which didn’t help and in fact seemed to make him worse. We went back to GP who then prescribed Sertraline, an antidepressant. These drugs made him so ill and in fact became the catalyst for me demanding to see a neurologist as I knew something was not right. He saw a neuro registrar and had a series of tests and physical examination, but no firm diagnosis could be given. He was told he’d be seen again in 9 months to be re-assessed. So we were none the wiser as to what was causing his symptoms. This went on for a while and he was getting worse so I phoned the neurologist’s secretary and said we’d go private as he was so desperate. Fortunately she was very understanding and said she’d she if she could arrange an appointment, and then offered him one in just over a week. This was with the NHS. It took the consultant less than 15 minutes to make the diagnosis of Parkinson’s! All this was just over 6 years ago when he was 65 and just retired. Although we were both extremely shocked, he actually said he felt better finally knowing what was wrong with him. It’s been a tough road since then but we are trying to keep positive. There are bad days and good days, but since joining the forum I realise we’re certainly not alone. I hope you can get a neuro appointment soon. At least then you’ll know what is wrong and he can be treated accordingly. Good luck. Jean

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Hello Hennie
I’m the wife of PD sufferer and I know exactly how you feel. It’s so difficult. You know him so well you can spot changes that even he may not be aware of yet. I noticed changes in my husband’s behaviour a couple of years before I spotted the tremor in his hand. It’s a tricky one - health is a very personal thing and I felt for a long time I was on a see-saw of either feeling in the dark because I wasn’t included or worrying about being too intrusive. Eventually he came to terms with the idea of me as “notetaker” and prompter for dates and info, so I am now included in appointments.

As I understand it, and there are others who are better informed than me on here, Parkinson’s is a sort of “grab bag” of symptoms. There isn’t a conclusive diagnosis as such, like a blood test. It’s just a matter of eliminating other causes for the symptoms and then the likelihood is that it is PD. You need to ask the GP to organise a referral to your local Neurology Dept.

He definitely needs a face-to-face appointment with the GP. You should be offered one if you say you need one. The GP needs to see how he walks and carries himself. It might help if you put it to your husband (and the GP) in terms that it would set your mind at rest if PD could be eliminated (it might be not be PD). If it is, he should be comforted to know that a good medication regime will make him feel much better and resolve a lot of the tiredness and slowness. My husband has managed extremely well over the 6 years since he was diagnosed. He went from only being able to walk very short distances to going out for a daily hour’s walk (if still a little slowly) and, up until recently, has been living a perfectly normal retirement. (His recent decline was caused by something completely unrelated to Parkinson’s ironically.)

Being diagnosed with PD is life changing so it’s not surprising he may want to just shut it out. You are doing everything you can and you may just have to be patient with the outbursts as a symptom of the anxiety he must be feeling. There will come a point when he can’t ignore it any longer and he will need your support. There is nothing to stop you making an appointment to discuss it with your GP - this concerns your well-being too. In the end, it is down to your husband, but it might give you some leverage if you are able to argue his health is affecting you.

I would also recommend the Parkinson’s nurses that you can email through this website for support and advice.

Very best wishes - it’s a tough time, but you are doing the right things

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Thank you so much for your support, Catherine. It’s good to know I’m not alone. x

Thank you so much for your advice, Jean. It’s a great comfort. x

Sorry I can’t suggest anything more… Hope all goes well with you both going forward. Jean x

Hi. I was very similar to your husband,as a man of 64 I suffered Parkinsons symptoms for about five years before I was diagnosed at 60. In denial for a long time, always fit, active, sporty, my wife recognised the symptoms and sent me to the GP, first they thought essential tremor, I had the stiffness across the shoulders called coathanger pain, had physio and painkillers for that, its still there, stiffness in legs, clumsy and always dropping cups and glasses and now and again I stumble. I was sent to neurologist who recognised Parkinsons straight away, even though I expected it its still a bit of a shock, MRI scans followed and I was diagnosed 4 years ago. Have been on various medications which is a bit of trail and error till you find whats right. I feel okay now but went through the stages of denial, guilt, blame, shame until I accepted it. I did a clinical trail for a new drug and met some lovely people who happen to have Parkinsons, some worse than me. I hope you can persuade your husband to see someone and find out one way or the other, if it is PD to have it confirmed actually helps you come to terms with it . Its not the end its the start of a different road, I read Billy Connollys stuff about Parkinsons his attitude to PD makes me laugh and strenghtens my resolve to keep attacking, bugger Parkinsons and keep living and enjoy life !
Best Wishes and good luck
Jack

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Thanks Jack! Billy Connolly always cheers me up :+1::grinning:. I’m just not sure whether the time is right for me to tell my husband what I think could be wrong with him - I could make matters worse. Perhaps it’s best he doesn’t know until his symptoms become too obvious to ignore? :thinking:

Hello Hennie. I totally understand your dilemma It is a difficult decision, my wife suspected I had PD for a long time, to be honest so did I, I kept putting it to the back of my mind and tried to ignore it and came up with other reasons, its not something anyone wants to be told, in the end it was my decision and the neurologist diagnosed me within 5 minutes of watching me walk to his office and studying me. I hope things work out for you both. Best wishes.
Jack

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