Hi. My husband was undergoing tests early in 2020 then lockdown happened and all things stopped. We were fairly sure he had PD but nothing had been formally said. He was walking (shuffling), washing/dressing and even still driving OK until he had a fall in November which made his condition so much worse that he couldn’t walk or talk properly. He was finally admitted to hospital after our GP read the notes from a 24/7 emergency doctor suggesting a CT scan. He was diagnosed in hospital with PD but discharged on 23rd December. He can barely walk even with a frame. We do have a carer come in every other day to help with showering and we have a frame/pressure cushion/step/shower seat to help. Grab rails are on the waiting list so we bought our own, along with a wheel chair and armchair pedal exercise. But we are both very down and I don’t know where to turn and feel so isolated and alone. Please, I need help and advice as to how I can help him better
Hi Manda, we’re sorry to hear things have been difficult of late. We just wanted to welcome you to the forum, where you will receive loads of helpful advice, experiences, and words of support from our community of wonderful PWP, their family and carers. Please make sure you’ve taken a look at Parkinsons.org.uk where you can search for everything from medication research to diet and exercise advice, and feel welcome to call us directly at 0808 800 0303 for a free and confidential one on one chat.
All our best wishes,
Thank you Jason.mod for your reply. I was already going through the website before I got up the courage to ask for help and will continue to do so. The speed of your reply has given me a glimpse of a light.
You are in a pickle but hope we can help here on the forum and I will do my best to get the ball rolling as a forum user and one who has also been selected by life’s own brand of selection to have Parkinson’s. First thing to say is offer apologies if I have misunderstood but I only have what you’ve written to go on so I will say it as I see it to start us off and see if we can’t sort the wheat from the chaff and get you and your husband to a bit more positive position - which I fully understand is practically impossible for you to believe right now but don’t give up on us yet. I’m going to use bullet points for clarity not my usual style I have to say, too business like but for you I think it will help to be clear so without further waffling here goes.
- You seem to have been very unlucky to be hit so hard by the lockdown which has meant you have been most of last year waiting for a diagnosis with nothing happening. I would imagine that in itself was incredibly hard and stressful so its no wonder that you feel as you do now - having had nothing suddenly just before Christmas you get a diagnosis that you suspected confirmed and your husband’s abilities seem to have suddenly sunk.
- It sounds to me like you were given some kind of emergency support to minimise risk to your husband for his return home from hospital ie you have care support and so on.
- I am assuming you are to be offered an appointment with a neurologist over possible treatment options. If you are not clear about what happens next i suggest you get in touch with your GP and find out what is happening and that you do this ASAP.
- If you have an appointment how long are you having to wait? If it is several weeks it may be worth going back to your GP and given the level of psychological stress you’re both under see if he or she can help you manage the interim in some way.
- This is me guessing a bit so don’t take it as gospel but Parkinson’s in most is slow moving and your husband’s apparent rapid decline would be a bit unusual. However this could be in part due to either he has not yet started on medication or it is not yet right or the impact of the stress and anxiety he is under. I stress this is just a maybe, I am not a doctor but both of these can have considerable impact.
Just to speak a bit more generally about Parkinson’s.
- The early days are never easy and it can take time to get medication right but that can make a substantial difference to how one manages.
- Medication is a complex area so make sure you know what the purpose of any recommended is and go back to the consultant or GP if you have concerns.
- Stress can play havoc with symptoms so do what you can to minimise this, which I appreciate is a hard ask at the moment but do what you can,
- If you have a local Parkinson’s support group and the helpline can help you find contact details, I suggest you get in touch. You may or may not be a 'group person but even if not normally your cup of tea, given you feel so alone at the moment I really would encourage you to make contact if for no other reason than they would know about local resources.
- Make a note of any questions you have along with any patterns or changes you may notice about your husband and how he manages, eg does he manage better in the mornings, what does he specifically have problems with, is his mood variable in fact anything that will give his medical team the most accurate picture as this will help with treatment options. It will also mean you won’t forget anything it is surprising how your mind can go blank at a consultation.
- Don’t go mad reading everything in site you will probably get information overload, feel more confused if not downright depressed at the future youand your husband are facing. Concentrate on what you need to know now. That’s enough for the time being.
Finally I want you to know a diagnosis of Parkinson’s is not the end of the world unless you choose it to be. The early days can be incredibly hard but give yourselves time, take baby steps and one day at a time. Things do settle, you and your husband will find a way to live with Mr Parky and life is definitely not all doom and gloom. It may be different to how you saw your life but it still can be a good life.
Hang on in there and you will come out the other side managing your lives with Parkinson’s, we on the forum have all been there and lived to tell the tale.
I’m afraid this is rather long but hope it has given something for you to work with - if nothing else the knowledge that here on the forum you are not alone and always find support even if not as long winded as mine !!
Keep in touch, good luck and lots of love from us to you.
Hi Tot, it was great to see your reply and I did feel somewhat comforted. I shall most definitely be contacting the GP tomorrow with a lot of questions but I don’t hold out much hope there. All he could offer me before Christmas was for me to contact Social Services. We shall see. I think part of my problem is that I don’t know who I can contact for help and advice about anything so this forum will hopefully point me in the right direction. I am now going to go through all your points to start to make a plan. #feeling better
Hi @Manda and welcome to our world, it is daunting to those who are diagnosed. @Tot has given you a very comprehensive answer. In addition to what she has said you need to know where your nearest Parkinsons Nurse is, this information you should be able to obtain from your GP Surgery. With xmas out of the way you should be able to speak to one, they are, in my opinion, worth their weight in gold. Perhaps when the time is right you could give us an update on your progress. If you have any questions you want to ask then we are always about and are ready to provide you with answers. The thing with this Forum is you’re not alone we are all in the same boat. Take care and stay safe.
Hi Les, and a ‘thank-you’ too for your reply. I contacted everyone I could think of - Memory Clinic/GP/hospital social worker/care providers. The GP was again not very helpful - he read out my husband’s hospital discharge letter where it stated he has mild Parkinson’s at which point I must admit I became icily polite and asked if not being able to walk/talk properly and having no co-ordination was what he considered mild! He said I could have a copy of the letter but it showed no name of the neurological consultant concerned. As I was waiting in the surgery he asked me to go talk to him and he said he had spent a whole hour going through the case and that he had already referred my husband to the neurological department last September but was not clear as to if this had been followed up at all. He had been in contact with the secretary to (hopefully) get some urgency into my husband being seen. I also managed to make him to do a home visit today so that he could see for himself how my husband was. The occupational therapist is also coming out today to assess hubbie. So something is happening. As to contacting the Parkinson’s nurse - we have no formal diagnosis so can’t go down that route yet. But personally I am back on an even keel and able to think more clearly.
Hi again @Manda I am pleased to read that you have stuck to your guns and stood firm over your husbands condition and that something is getting done at long last. At least you can draw some peace of mind from what @Tot put in her post and that you’re feeling comfortable in dealing with your husbands situation. As I said before you are never alone on this Forum as someone will come to your aid. Take care.
I haven’t looked at the Parkinsons site for a long time but I felt that I couldn’t not respond to your message.
I am so sorry that you and your husband have gone through such a horrendous time. I truly emphasise when you feel you have nowhere to turn and to have all of this happen during Covid is just too much to deal with.
I think that Tot has given you the most comprehensive response which is great.
My own personal experience is that my mum has had Parkinsons since 2003 so during those 17 years I have learned a lot. My mum is 79 years old.
She has had lots of falls in recent times and over the past 6 years has had many health complications and hospital stays.
Your husband’s rapid decline from the fall is not something that I have experienced with my mum. How old is your husband? I will only say that I have had to challenge lots of doctors and nurses over the years. Really insist when you know something is not right.
The Parkinsons Helpine will be a good initial support to let off steam and have someone listen to you. If you are not getting the answers you need from your GP, then ask to speak to a different one. Ask to see proof that you are now in the system to see the Neurologist. Even if you are not able to physically see the Neurologist during this time, you should be able to have a telephone appointment.
If you have any other questions, let me know. I have most certainly been there!