Hello to all carers, I’m the sole carer for my husband who has had PD for 8 years. We are both in our early 70s. I’ve just had results from a Dexa scan which shows I have worsening osteoporosis mainly in my spine (I had first scan 5 years ago but decided against taking medication and tried to maintain an exercise healthy eating regime and took the vitamin D and calcium also prescribed every day and still do) GP said I now need to start taking medication. I’m feeling really anxious about what the future holds for us both as it’s very uncertain how long I’d be able to care for him should the worse case scenario happen with my osteoporosis…
I am currently trying to decide whether to take the medication as I’ve read some awful stories about it regarding very nasty and sometimes serious side effects. I know it’s up to me in the end to decide but if anyone out there is in a similar position and is taking the med (alendronic acid) with positive results I’d love to hear from you.
Caring for someone with PD is stressful enough without dealing with a serious and possible life changing diagnosis of one’s own. Feeling very anxious and finding it hard to keep positive. I really hope to hear some positive feedback on this subject.
Many thanks and best wishes to you all. Jean
Hello Jean1
It’s been a while since we last ‘spoke’ and I will say upfront that I can’t offer you much advice that may help with the difficult position you find yourself in; I simply don’t know enough about the subject and have no personal experience.
Having said that, I can understand how you are struggling to come to terms with your diagnosis and are worried about the future you and your husband face. As you will be only too well aware there are rarely any cut and dried answers when it comes to chronic health conditions and for both of you to be affected in some way does focus one’s mind rather sharply. I think you perhaps have to remember advice that you would have read many times with the newly diagnosed on the forum, and that is you need to give yourself time to get used to your diagnosis and to get your thoughts on the future in it’s proper place. By that I mean that at the moment you are probably imagining a very poor quality future for you both and maybe that will be the case, but equally it may not. The fact is, unless you are some kind of psychic, you won’t know what the future holds. If you are careful and follow the advice and regarding how best to manage your osteoporosis, there is no reason you can’t carry on as you are doing.
You will, as time goes on, become aware of changes in either of you that may indicate things need to change. You have time for you and your husband to have some honest discussion about the sorts of things you may need to consider if the worst did happen - what that worst may be depends on how you see any given situation and you may need to change things depending on how both your conditions progress. Having given it some thought perhaps there are things that you can put in place ‘ahead of time.’ Off the top of my head extra care housing comes to mind Assisted Living (extra-care housing) | Housing choices | Age UK
My own scheme locally allows me to forward plan and I have had my name down on their register for a few years now. They just check each year I want my name to continue to be on the register and it means that should I need such a facility I am already off the starting blocks so to speak. Discussing what you both want and getting information about what is involved etc can help reassure you that you have done what you can.
Of course you can’t factor in everything and falls causing fractures are probably the biggest risk factor you both face, if the worst happens chances are the statutory services will be involved to help you both make decsions and you can of course refer yourself for assessment if you feel the situation is becoming untenable.
You have always made efforts, as you have done here, to get advice etc from forum members to help you with changes that your husband is experiencing. I have no doubt that once you have given yourself a bit of time to take your diagnosis on board you will continue to do that as you need.
For what it’s worth I am of the view that you will continue to be honest about your situation, determined to do your best for your husband and yourself and that will be driven by your determination to remain positive even if that stalls a bit now and again.
I hope someone will come along to answer your main query but I know you will ultimately make the decision that is right for you and your husband as you always do.
Best wishes.
Tot
Hello again Tot, and thank you for your speedy response. I feel very unsure of what to do for the best, but I realise I must trust the medical profession and go with their guidance re starting the medication. I know none of us know what the future may hold, but it’s very difficult to think positively when you receive such a diagnosis. I have already looked at the Royal Osteoporosis website and I think I’ll contact their helpline as I’ve received absolutely nothing in the way of advice or reassurance from my GP. It was ‘so do you want me to write a prescription or not?!’ when I asked more about how the scan results were reached and their meaning. In fact she didn’t seem too sure of the true meaning of the T-scores herself! She simply wanted to prescribe the medication which is fair enough but it would have been nice to have a little more time on the phone to ask a few questions that were concerning me. So I’ll just have to do as I did when my husband was diagnosed with PD and try and get as much information as I can before I begin the medication and just get on with it. This particular drug has a very bad press regarding side effects both immediate and long term so I need to be armed with as much information as I can to enable me to weigh up the pros and cons. Thank you for your support Tot, and I hope you are keeping well. Sending you my very best wishes. Jean
You’re doing all you can Jean1 to put yourself in the best place to make the right decision for you and you have my utmost respect for the courage you are showing given the complex circumstances that you manage every day. I wish I could do more to help but do let us know how you get on won’t you.
I am well thank you. Bit of a bumpy start to the year but still standing and my Parkinson’s seems to be in a settled phase just now so am feeling very fortunate.
Do take care and try not to worry too much.
Tot
Hello Jean.
I had resolved not to post again but reading yr story resonated with me . I am coeliac undiagnosed for many years affecting my earlier life. The result was that I did not absorb calcium and was diagnosed with osteoporosis in my early fifties I took medication, not the one you mention and followed all the advice. The result is I am now osteopaenic, have increased my bone density and lead a normal very active healthy life I do have arthritis in cervical vertebrae but again manage this. I have a close friend who has taken the medication you describe with no noticeable side effects and again she has managed to increase her bone density. The press and internet are full of horror stories about various medications and there will always be contraindications when you read the leaflet however if research and data show this medication will have a positive effect for you, and has been approved by NICE I would at least trial it and see how you go.
When we live with the uncertainty of serious illness it is easy to feel overwhelmed by all we have to deal with. We can let our thoughts to run away with us. This is particularly true when we have nobody to talk things through with and your husband or partner is not capable of giving you the quality of conversation you need. I am so pleased the forum has allowed you to reach out . Although we are all different I understand what it is to have someone who you love and care for .totally reliant on your well being.
I know I have been in contact with you before. My husband who has been diagnosed 19 years is now under the care of the palliative team at our local hospice. Almost overnight they have moved to provide the care and support we need. I have found it quite overwhelming after having fought for good care for so long.
This type of care is so expensive. I just wish it was more available. However I hope you find it comforting to know it will be there for you both if and when you need it.
I wish you well Jean
Much love to you and your husband.
Hello again yogalady, and yes, we have been in communication in the past, re our caring roles. Thank you so much for taking the trouble to post a reply as I know you are going through a very difficult time yourself and my heart goes out to you. It’s reassuring to hear something positive about taking this medication at last! So glad you have managed to reverse your bone density scores after taking your particular drug and good to hear about your friend having some success on alendronic acid. I felt a sudden sense of panic and indeed impending doom in receiving the diagnosis, which certainly wasn’t helped by the Dr’s rushed attitude when I only wanted five minutes of her time to explain things a little. I also have osteoarthritis which I mostly manage with paracetamol when it flares up. You were a lot younger than me when you were diagnosed so I hope at the age of 74 I too can keep things on an even keel for a few more years at least. I’m going to up my exercise routine and get out walking more when I can. Must admit to very mixed emotions at the moment but I really need to take action rather than sit here dwelling on the worst case scenarios. It was the same when my husband was diagnosed with PD. It will take a while to come to terms with it and how I decide which route to take re medication, is of course going to be down to me. But I will seek as much advice and info from the Royal Osteoporosis society as I can before that decision is made. You are quite right when you say there’s too much bad press out there re medications and I know in my heart I should avoid ‘Dr Google’, so I’ll try and avoid any more negative comments. Once again, thank you so much. You really won’t know how much you’ve helped me by posting. Sending our very best wishes to you both and do take care, Jean
Hi
Sorry to be so long in replying but I’m not frequently on forum.
I have been diagnosed with Parkinson’s for nine years and Osteoporosis /Osteopenia for ? 11 years.
I have been taking bisphosphinates for over ten years, initially then risedronate. I was then put on an annual infusion of Zolandronare. The first two were by weekly tablets to disolve. The ximportant thing is to stay upright for 1/2 to 1 hour after drinking the mixture and don’t have anything to eat or drink in that time. It burns your Oesophagus as v acid if you don’t.
I have been on daily injections of Tereparatide for the last two years. It is one of the newer treatments that aim to build new bone as well as slowing old bone removal.
I swaped off the Alendronate as I felt rotten for the rest of the day after I took it. Risedronate had no problems.
I was checked initially as Mum had osteoporosis as well as Parkinson’s. The report said I had “aging” bones and a DEXA of -1.5. I was given the choice of treat or not treat and having seen Mum, took the tablets. No great interest from GP or referral to specialist clinic that has been shown to improve outcomes (see NICE pathways). I went on and had a trip the following year and broke the neck of my R Humerous. Not seen in a fracture clinic or told this counts as a fragility fracture. Fast forward to Feb 2020 and I had SEVERE pain crntrred in one spot of my back. By paying privately I got MRI’d before lockdown and got diagnosed, issued with paracetamol as painkiller (inadequate!) and eventually re DEXA’d. Still. -1.5 so classed as Osetopenia as having had an Osteoporotic Fragility Vertibral fracture. Fragility fractures (back and shoulder) give diagnosis of Osteoporosis.
Since then I have had 2 more vertibral fracture’s and my DEXA scan remains the same.
No one can tell me why I fracture on such a good DEXA score. It seems to give a vague idea of what is happening. The most important thing for you is that you have not broken anything and what you are doing will improve your chances of your bones staying intact.
The regime for Osteoporosis is so much simpler than Parkinson’s. Watch out for the newer treatments coming available as they do seem to improve outcomes (50% reduction in risk of another spinal fracture) but you will probably only be eligible for these if you do have a fracture. Hopeful therefor it won’t apply to you
It seems that this field is as poorly affected as Neurology/Parkinson’s. It is reactive and not proactive. I don’t know what will help to fix the system
Hi Thorny, and thanks for your response. I have started to take the Alendronic Acid. Took my sixth one at the weekend. They are once a week and I’m trying to be strict about remaining upright and allowing the correct time to take my other meds, plus delaying eating etc. I’ve noticed a couple of side effects, but it’s difficult to attribute these solely to the AA. As I have silent reflux (which I take a med for), some of the symptoms like indigestion can be due to that, but I have noticed an increase in this, plus odd headaches and feeling bit achy and generally off colour. As these are listed as common side effects I’ll take it for a while longer and hope, as my body gets used to it, these will lessen. I must say I’m very surprised that you were given the meds based on those T-scores as they are not even borderline osteopaenia from what I can make out. I thought osteoporois was based purely on poor T-scores as being a totally reliable marker of the condition and need for medication. I note your mum had osteoporosis though so your risk could well be higher due to this alone. But I’m still very surprised you had such good T-scores yet obviously have OP! I was first diagnosed five years ago as having OP but decided not to take the AA then as had read of the bad side effects and more worrying, the more very serious ones, albeit supposedly very rare. I have taken CalciD though every day since then. I requested both my Dexa scans and was shocked when I was told my scores indicated osteoporosis five years ago. My last scan in December last year revealed slight worsening in my spine but hip still borderline osteopaenia/porosis. I can only hope that this medication will prevent any future problems. As sole carer for my husband with PD it is indeed a worry long term. Sending my best wishes to you and hope you keep as well as you can with both your health conditions going forward. Jean
I feel every bit of your anxiety jean, im my husbands support, he has had PD since 2016. At xmas i developed severe back pain, March they finally x rayed me and i have 4 vertebral fractures. Im so afraid for our future. I was the active fully mobile one. Now he is helping me out of bed, but only after he takes his morning meds and legs are working! Gp has no interest in my home circumstances, eventually, at my request, i got an OT assessment for me. I obviously explained our home circumstances, but as long as i can stand with his help, they are happy to leave us to it. Dexa scans are ordered for me. I expect drugs may be suggested. We couldboth end up not coping in the future. Of course we may be lucky, i may recover enough to manage daily life independantly, without that, caring for my husband in the future will be difficult. Its a situation i had never imagined.
Hello Jandc, thank you for your reply and I’m so sorry to hear you have experienced painful vertebral fractures. I’m presuming up til then you hadn’t been diagnosed with Osteoporosis? Like you, my main concern was how I’d look after my husband if I was incapacitated myself. I’m finding it hard enough now as his PD is progressing. He now has early onset Parkinson’s dementia to add to his list of ever increasing symptoms (as we know all too well Parkinson’s is the gift that likes to keep on giving) sadly. I really hope you get some proper support for your own serious health issues. Have you contacted the Royal Osteoporosis Society? I’m sure, like Parkinson’s UK, they will be able to offer reassurance and also answer any questions you may have and hopefully also be able to point you in the right direction for the most optimum pain relief while your fractures heal. I’m wishing you both well during this extremely difficult and stressful period. Do let me know how you get on if you do decide to contact the Royal Osteoporosis Society. Take care and best wishes. Jean.