We are a family of 5, with 3 children aged 14, 11 and 9. Hubby has recently been given Madopar 100/25 after 18 months of monitoring symptoms. He has yet to be formally diagnosed but has an appointment in a couple of weeks with the consultant at which point we’re hopeful that it becomes official, so to speak.
Of all the horrors the symptoms might have been we are thankful that it looks to be PD.
My stepfather had PD for the last 15 years of his life (he died at 75 in Mar20) so I am not unfamiliar with is as a condition.
I have signed onto the forum to gain a greater understanding of the condition and to find guidance for myself and my children and as a sounding board for when it’s all a bit aarrgghh.
Hi and welcome to the world of Parkinsons Rachel, it isn’t as bad as it sounds, i’ve had it since 2011 so feel qualified to give you some help. I am currently taking Madopar 200/50, 4 times a day and it works for me. As you will learn on here not everyone is the same so what works for one doesn’t necessarily work for another. The most important thing is for your husband NOT to change what he is doing because he has it. Do your thing every day what you normally do, if he does get a positive diagnosis as and when things change he will know. Like not being able to do certain things but hopefully it will take a long time before this happens given his age.
What I tell newly diagnosed people is to adopt a positive attitude, you have Parkinsons, it doesn’t have you. If someone can see you need a hand don’t be proud and refuse, always accept people’s kindness. Be upbeat and have a laugh about the condition especially if he has a tremor, I remember I used to wobble like a jelly prior to diagnosis !! It is not a disease to be ashamed of, let people know you have it and apply for a Blue Badge from your County Council Office. Assuming your husband gets a positive diagnosis it will be useful to know where his nearest Parkinsons Nurse is located, this information you should get from your GP Surgery, they are very useful people and can help you with any concerns you may have. Rachel, as your husbands carer you are in the best position to notice any changes in your husbands behaviour possibly before he does !! With your children the same applies, don’t treat Dad any differently assuming he gets diagnosed be yourselves you they will also know when he behaves differently. Before you go to see the Consultant it will be useful if you write down anything you may want to ask, anything that is playing on your mind.
With me I have two tremors, Parkinsons and Dystonic(greedy I know LOL), the Parkinsons is controlled by a Deep Brain Stimulator(DBS) which keeps the brain producing dopamine. Also I have memory lapse, I have the occasional fall, a resting tremor in my legs and over the past year have started dribbling(yes, i’ve played football in my time !!). I have been known to snap at my wife but given that i’m 68 this would come under the heading of Grumpy Old so and so !!
In the meantime if their’s anything you want to ask I will do my best but hopefully by then someone else will be on here to offer advice or the benefit of their experience. When he has been for his appointment come back on here and let me know how you got on and then I can see which path you need to take. Have yourselves a good weekend and hope that my info helps. Take care and stay safe.
Wishing you and your family the very best, Rachel. It sounds like your husband is lucky to have you.
I’m 46, married and a father of two, and formally diagnosed (DAT scan) last August. I’m quietly discovering that alongside the medical support, there is a deeply positive and supportive PD community to draw upon. I’m a Brit but live in the US. Parkinsons UK does a brilliant job; you might also want to look at the resources provided by the US-based https://davisphinneyfoundation.org. I’ve found their webinars/online conferences to be informative but also affirming/inspiring.
Strange though it may sound, I think getting a definitive diagnosis may help. It helped me and my wife. No more fear when you meet new symptoms. We know what it is. Now we plan for what comes next.
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Hi Rachel,
Can understand where you are. My hubby was dx 8 yrs ago but symptoms started 11 yrs ago, just b4 our youngest was born. Our kids are now 11 and 12.
If you want to talk to a fellow yopd spouse who is also managing children please msg me.
Tgank you for these words Les, not written to me but very grounding all the same. My husband was diagnosed 3 years ago, he’s 55 now. We have muddled along and aren’t doing too badly. He is proud though and is reluctant to put himself in a position where he may need the help of others. This means that he has become very dependant on me and is nervous of being out and about on his own. My experience is that people are very kind! Tips on how to build confidence would be welcome as I work full time and he risks becoming a little isolated. Thanks for being here! Sarah
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Hi @SarahG, Welcome to the forum. If my words brought some kind of comfort to you then i’m doing my job right. Does your husband have any interests like sport, may be Bowls ? I belong to a club here in Dawlish, Devon and I find it a good social gathering, the other members are aware of my condition and always look out for my wellbeing. May be he has interests he can share with others who are like minded, there are plenty of Parkinsons Groups who meet up. Tell your husband that because he has this disease doesn’t mean he has to be too proud to not accept the offer of help when presented.
On tips to build confidence he needs to adopt a positive attitude and treat the disease like it is some thing he picked up on the sole of his shoes. Don’t be afraid to tell people that he has the disease and always be prepared to have a sense of humour with it, this in turn will relax people around him. Cast Parky aside as a minor irritation, the one thing that will come up time and again is the fact the everyone of us on here are different and your husband is no exception. To give you an example, my eldest brother had the extreme for of Parky in that he had the full body shake whereas mine started out as a Dystonic tremor and after a great many years suddenly became what it is to-day. I had a groin hernia and it was after this operation that the trigger was pulled and I had got Parkinsons !! I have a Deep Brain Stimulator fitted which had my Consultant listened to what my wife was saying I would be better than what I am now. Instead i’m left with the Dystonic Tremor which means when I come to use a knife and fork I get a bit of a wobble on or when I do something that requires intense concentration I get the same.
Possibly you could get him to come on here and read what other people have written in the Introductions Section just as you have done by reading my post. There are plenty of good people ready to offer the hand of friendship and help you and your husband get a better understanding. I am hoping that this has helped a little more and helps take pressure of you. The positive about this forum is that you’re never alone if there is anything else you want to ask then go ahead and do so, someone will always come back and give you an answer. In the meantime both of you stay safe and take good care of one another.
Hello SarahG
I completely agree with what cruise controller has written and I am sure reading through some of the other posts will make him think differently about his situation if you can get him to read some - maybe print some off and leave them out for him to pick up if he won’t come to the forum himself. The reality is that however much he may want to keep his diagnosis secret, when push comes to shove he won’t be able to. The issue is not really about about whether or not your husband wants people to know because he won’t be able to stop those small things that others will see, it’s called leakage. The issue is whether he prefers people know the facts or leave them to let their imagination run riot and may be seen as an alcoholic or drug addict for example. I would suggest that few would think of a neurological condition as being the cause. I am very well aware that it is not an easy thing to tell people but once you have done it it very quickly becomes old news and life carries on. Once people know, your husband will probably find that in a odd way, he also has his life back because he can take the lead in deciding how his condition is managed - he can say thanks but no thanks to offers of help, he can more easily explain why he may be a bit slow or that he may look awkward but he can still do it etc etc. It is far easier to live with Parkinson’s in my opinion, if people know. As cruise controller has said there’s no shame in having Parkinson’s. It’s not something we have done or not done it’s simply the card life has dealt, a card that is not how most saw their lives it just sends us down a different path that’s all. It’s how you choose to walk that path that is the key. My own mantra is I have Parkinson’s it doesn’t have me. I will always be Tot who happens to have Parkinson’s, it never takes the ‘top spot’. I hope your husband can find his own path to live with Old Parky in tow, both for himself and because it is probably the single biggest gift he can give to you as his support.
My very best wishes to you both.
Hi Again @SarahG, @Tot does write an impassioned post and very detailed at times which in many case isn’t such a bad, you can take heart from her in all of what she suggests. Printing off Introduction stories, assuming your husband doesn’t want to embroil himself in the forum is a brilliant idea and would help to see what others are going through. If your husband wants to get involved there is a Social Club Section and there are things there which may be of interest to him.
With you having a full time job to boot it must be a little frustrating for him especially if you’re out all day, unless of course you’re one of the lucky ones who are able to work from home, which is why I suggested an interest away from home where he can meet people and make friends. As always, take care and be safe out there.
Hi @juju Thank you for asking about my DBS, may be you can tell me about what you’re going through at the moment… To expand on my post of 28th April I took loads of different medications to cure my tremors. It is this what got me a DBS consultation, have you taken lots of medications ? The operation itself went well and instead of waiting three weeks to get it turned on my consultant was there beside my bed the next morning setting it up to turn it on such was the success of it. Afterwards I was a totally different person, my wife couldn’t believe the transformation, I went from wobbling like a jelly to being in control. I had mine fitted at Addenbrookes Hospital, Cambridge, in 2013, it is a very daunting operation but the result is life changing which is why I recommend people to have it done. Just a pity that the Consultant didn’t listen to my wife before the operation as I have the Dystonic Tremor which affects my left hand !! Ideally I would like this sorted but I may have to go back under the knife, once was enough without going under again but we will see !!
What I recommend is that you contact your Consultants Secretary to get an appointment to talk over having a DBS fitted, while waiting it would be a good idea to write down anything you want to ask about the procedure. With my now living in Devon I come under Dr Whoan at Southmead Hospital at Bristol. There are several makes of DBS, mine is St Jude and i’m on my second battery(replaced 2017) which is controlled by an i-pod of which i’m not happy with as I have to recharge the control every other week !! With my first controller I had a big square Duracell battery which I put in every time I needed to check on the power, it was so much easier than what I have !!
If there are any bases you feel i’ve not covered don’t hesitate to get back in touch, I am here to offer you the best advice possible even if it is a bit garbled !! I didn’t really know what to tell you so i’ve gone through it all. Take care, stay safe and have a great weekend.
Thank you for going through everything - getting information from people on this site has been the best thing for me.
I have not had a very good experience with staying in hospital so the thought of it makes me panic.
I am really hoping that I get accepted as a suitable candidate for DBS as my quality of life is so awful at the moment.
I wake up (if I have been able to sleep at all) with stiff limbs, I have taken to answering when called ‘Aunt Sally’
I shuffle around like a geisha on Valium.
I had to use a wheelchair yesterday
My tremor appears on the right side only and I am exhausted when it stops. It’s not been too bad at all up to a year ago.
The off periods are most of the day now. I have always been on Madopar and have reached the maximum dose and frequency for my body to tolerate.
I am 60 and have been diagnosed 14 years. My progression was slow up until 18 months ago when a dark sink hole opened up and I fell into it.
Last February I developed fast onset of dyspnea which the cause of was neurological. I struggle for with my breath for hours at a time. My plea for advice from PD nurse: I was now advanced and had I made an end of life plan!!!
I am not good at being assertive with doctors but the worm is turning and am prepared to excessive my right to patient choice with my care.
The NHS is full of hard working empathetic professionals. I maybe need to spend some time to find them.
Hello there, it shouldn’t be such a struggle but sadly all too often it is. I would check out the NICE guidelines for best practice so you know what the standard should be then stand your ground. When push comes to shove, it is happening to you not them and you have a right to expect a little more than you are advanced PD and have you made an end of life plan. Even if that is a good idea he or she should not make it sound like all hope is lost and that is the only course open to you. Managing deterioration is as much a part of treatment as any drugs and any professional worth their salt would know this and show you respect and compassion in any dealings they have with you. It is true that sometimes difficult discussions need to be had but you are juju who happens to have Parkinson’s and it would perhaps be no bad thing to remind them you are a person not a Parkinson’s patient or case number and you expect to be treated accordingly. I get so cross when I read posts like yours because you deserve better. I wish you well in your search for decent support. They do exist.
Tot
Hi @juju As per my first post on this topic I am presently on 4 x 250mg Madopar a day, it was 5 as my Consultant in Exeter put it up to try to help the Dystonic but sadly had to no effect so when I visited Bristol they brought me back down. I admit that as I was waiting in the cafe to be admitted to the ward I did have a breakdown but once on the Ward I adopted a positive attitude and was very Gung Ho, very much like Americans are. I believe my battery is coming up for another change so we will see what they propose to do about my Dystonic Tremor as the Parky one is under control.
Thanks as ever to @Tot for your valuable input to this topic.
