An eventful few weeks for me

About me Introductions and personal stories
1

I mentioned recently on here that I saw an excellent neurologist as to whether my neuropathy was causing my mobility issues. Following on from this my new GP got an appointment with two lead physiotherapists at the local Conquest Hospital. One specialised in physiotherapy for Parkinson’s, the other specialised in patients who had musculoskeletal problems. The neurologist thought I might be in the latter group.

So today I went to the local diagnostic center & had a hip Xray to see if that might be the root of my mobility problems & tomorrow I go to the local hospital for a musculoskeletal assessment. Should be fun.

Although I know I have Parkinson’s I think I have other issues & I am trying to find out what they are. Plan B is to give up.

Best wishes
Steve2

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2

Nah, you’ll not give up. You’ll fight through it :ninja:

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Hi Hannah … I had the musculoskeletal assessment yesterday following my hip X ray which was normal. She looked at my Mri scan done two years ago & told me I have Spinal Stenosis & have been exercises to do & I go back & see her in March.

It really does seem to be one thing after another. I suppose I now know what my likely mobility issues have been caused by & they have teamed up with my Parkinson’s.

Best wishes
Steve2

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Hello Steve2
You certainly seem to be having quite a time of it with what must seem like endless appointments, with various medical professionals and to be told you have spinal stenosis as well as living with Parkinson’s must have been very difficult, even if it explains your mobility problems. There’s not a lot I can say that will help just now. The fact is life isn’t fair and you have drawn two short straws - I don’t think anyone would disagree with that.
It is true I only know you through your posts on the forum but I just wanted to let you know that I am thinking of you as you come to terms with this latest turn in your road. I’m sure the forum members will give you any support you need, exactly as you so often give to others. Do take care and hang on in there - it will take more than this to deliver a killer blow.
Tot

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Hello Tot … Thank you so much for your thoughts & kind words.
My life & living day to day is getting more & more difficult. I went to the dentist today to have £590 extracted from my wallet [new crown] & lying on the dentist’s chair hurt so much.

I am currently lying in bed as sitting on a chair / settee hurts my back & knees.

Clearly going on as I am is not an option for me & I am uncertain what I will do, As people say it is all about the quality of life & I’m not enjoying life at the moment.

Thanks for listening.

Best wishes
Steve2

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Hi Steve2,
Sorry to hear about your trip to the dentist, I seem to always get a pain in my mouth and a far lighter wallet whenever I go…….
Also sorry to hear of your list of issues, you have got a lot on your plate to contend with. You regularly support the PD community on this forum, I hope you have support too.
Keep fighting!!!
Thanks
James

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As others have said - very sorry to hear about your situation. One day at a time….hope that the exercises help and that your March appointment feels constructive. Hang on in there - your contributions here are greatly valued.

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Thanks for your kind comments annie & James.
Best wishes
Steve2

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Hello Steve2
I think you wrote the understatement of the year when you wrote ‘…and I am not enjoying life at the moment’ and I would be surprised if you thought otherwise given what you have recently been told.

I just wondered how you are doing now that you’ve had a day or two to digest the recent diagnosis. Have you started your exercises? Do you have your follow up appointment for March?

I know you are in a very difficult place right now Steve2 and there is nothing I can say that will change that for you or make you feel any different, I wish there was. All I would say is don’t underestimate yourself. You are stronger than you think - just think h0w you have kept going not knowing what it was. Well, you know now. Now you can get the correct treatment. That puts you in a stronger position than before. You may feel like throwing in the towel, but I don’t believe you are a quitter - and even if you are (since I don’t know you personally) is this the time to do that? I think not.

It is what I honestly think.
Tot

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Good afternoon Tot … Thanks for your reply & concern.

Yes I have started my exercises with little enthusiasm. I feel so tired that the effort feels too much. Yes I am going back to see this Musculoskeletal physiotherapist on the 20th March.

I spoke to my [excellent] GP this morning. She said that exercise / physiotherapy is the only option going forward. She says I am suffering from a combination of Parkinson’s & Spinal Stenosis & that surgery is not an option as my legs are strong.

I am struggling with sleep & I am to be referred to a Sleep clinic when an appointment is available. I have also hurt myself during sleep. I have tweaked the inside of my right knee & my back / neck is very uncomfortable when I wake up.

I get so much discomfort when I have been seated & try to stand up & walk. So when I am not at indoor bowls I stay in bed as it is where I am most comfortable.

So no I’m not feeing any better today but thanks for asking. It is having no hope of any improvement in my condition that gets me down.

Best wishes
Steve2

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Hello Steve2, you were quick off the mark with responding to my open letter. It is a silly little piece really but I just wanted to say in a very simple way that I and many others are doing ok some years on. That can be hard to see when you are at the starting gate. Unfortunately, that is not the case for you. I really do wish I could say something that would give you a bit of hope but it is not hard to understand why you write as you have. In your shoes I would feel much the same I’m sure. However I stand by my comment the other day ie you are stronger than you think. Even in your current difficult circumstances you are still posting on the forum thinking about and helping others. Don’t underestimate yourself - you have an inner strength that no physical problems can touch and which your mindset can strengthen if you let it. You may not be able to do that right now but I think you will in time. It may read like rubbish to you but what have you got to lose - when the time is right,
Tot

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Good morning Tot … Thank you once again for your kind encouragement. You certainly do ace “pep talks”. I have been wondering for the past hour as to whether
I should respond. It is so much easier to say “thanks” & leave it at that.

I suppose living alone as we both do & having no close friends or family to talk to makes this a place to share thoughts & similar experiences. I hope by sharing my experiences in this very long [& boring] post I can help someone as I guess it helps me.

All my life I have been an obsessively competitive sport playing person. In my younger days I have played Southern league cricket & National league hockey & in my mid 30’s to early 60’s I have played in Veteran European events & European championships at age group international level. So sport is very, very important.

In my early 60’s I took up golf full time & for the past 8 years or so I played golf to a reasonable level in Florida, where I lived for 6 months a year & then 6 months in the UK. In Florida a highlight was finishing second in a pairs high profile event. Then gradually into my life came Parkinson’s. Not all at once but gradually. It started with shaking. In stressful situations I could not hole putts. I once took 15 putts on a hole in a competition [3 putting a hole is quite bad] & people would accuse me of deliberately missing a putt to raise my handicap. From there it actually got worse where sometimes I could not move. I’d be standing over the ball & I could not move my hands & arms to strike the ball. So I had to give up golf. But I still had my walking &
I enjoyed that. 3 years ago I could walk 10 miles a day.

Then it became impossible to walk uphill. So I only went on flat walks. Then gradually the distance I could walk without my legs becoming heavy & my lower back too uncomfortable became less & less to where it is now which is basically walking from my car to where I essentially have to go to like My GP’s etc. I can walk 50 yards comfortably & 100 yards with discomfort. Now I also have to use a walking stick.

But I started playing indoor bowls about 18 months ago. About 9 months ago I had to stop that as I could not move my feet. I tried playing in a wheel chair but that didn’t work. Then came Sinemet & I can now play again. Everybody at my bowls club knows I have Parkinson’s & do help me a lot. Picking up my bowls etc … They are aware of my bowling eccentricates & my need to sit down between each bowl. Normally bowlers stay near the mat until both bowls have been bowled by both players.

I am actually surprisingly good at bowls & play in some of my club’s county league matches. I only play home matches which involves a 10 minute car drive. Away matches where I drive for an hour I find that on getting out of my car I cannot balance & I am shaking too much. So I don’t play away anymore.

I do feel other bowlers accept me. Quite a few do ask questions about Parkinson’s which is positive.

Simple things where I have problems … I really struggle to put on my right sock. Left one no problem but my right sock is a devil, so I often leave my right sock on for
72 hours before trying to change it.

A couple of months ago I missed the door opening & walked into the door frame & bruised my upper right arm. It seemed ok but I was having a bath a week later, I got in ok but for an hour I could not get out of the bath. Quite laughable really. It is a deep bath & I did not have the strength to lever myself up with my right arm. Eventually I pulled out the plug & put the bath mat into the bath & got more traction & I was out & free, otherwise I’d still be there now. I now have my mobile phone where I can get to it, even by the bath.

Cooking & eating is a problem. I do the cooking in stages as I cannot stand for more than two minutes. My eating is mouth to plate rather than fork to mouth. The number of times that food has fallen off my fork due to my shaking or I miss my mouth & stab myself. Of course I now only eat alone. Making a cup of tea is easy enough but I can’t transport my mug to where I want to drink it without spilling most of it. Part solution is having a large mug & only fill it half full or make my tea on my bedside table.

I find sitting down brings on my gait freezing & standing up for more than a couple of minutes brings on my gait freezing. The only place I feel comfy & warm is in bed. My GP & physiotherapist both think I should not stay in bed more than normal, but what else can I do?

I feel very frustrated that I am losing my mobility & nothing is being done that will help me. At 70 I do not consider myself old.

Then there is my medication I am on a lot. Every time I mention a problem I get given another pill or two. I’m sure they are not all helping me.

Then there is tiredness, nightmares & hurting myself while I sleep [REM].

I’m sure others are worse off than me & are dealing with things better than I am at the moment, you have my respect & sympathy.

Well rant over. I’m now off to play bowls.

I do now realise that my newly diagnosed spinal stenosis is as much to blame as my Parkinson’s. Good to know what is wrong with me.

Thanks for listening.
Best wishes
Steve2

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13

Hello Steve2
If you want to say thanks and leave it at that, then do that. You don’t have to answer at all if you don’t want to, I don’t expect anything from anyone.
It’s not hard to see how difficult you are finding the latest diagnosis given your excellent and wide ranging sporting history, but it was good to hear you can manage to play bowls even with restrictions.
I can understand why your GP and physio don’t think staying in bed is a good idea and that is because you lose muscle strength so quickly which compromises your mobility. It is effectively a trade off between the devil and the deep blue sea and only you can decide if staying in bed is worth it.

Difficulty putting one sock on. Do you try to bend down to put your sock on? If so you may manage better sitting down and putting your foot up on a small stool (or some books or a couple of packets if you don’t have a stool) you are closer to your foot and not fighting the full force of gravity, You might want to try different socks - I kid you not look for socks for diabetics, they are looser fitting (but stay up) and slide on much more easily than standard socks - I use them myself, especially good when my ankles swell…

I had a wry smile when I read some of your experiences because I too share some of them. I frequently have bruises from heaven knows where but a common one is walking into the door jamb even though well aware it is there, I too only fill a cup ¾ full because it spills when carrying it from the kitchen even when using my trolley. I have greatly simplified my cooking and eating - I don’t cook every day and make use of good quality ready meals a few times a week. When I do cook as far as possible I do my main meal in the middle of the day when I manage best and often it is one pot cooking using prepared vegetables. And I use a perching stool if I need. I have involuntary movement so knocking things over is an occupational hazard I have to be aware of and I also have some postural instability putting me at increased risk of falls in addition my fine motor movement makes managing utensils hard at times - i always have to take these into account before deciding whether or not this is a cooking day. You might want to have a look at adaptive cutlery, some of it is designed to reduce tremor and may help.

Using the bath is one of the high risk areas of any property and you did exactly the right thing - let the water out and used your bath mat (a towel would work equally well) t co get more traction, However you may be better looking at other options as getting up from the floor of a bath takes a lot of energy and effort and is the most hazardous part of getting out of the bath Bath seats and particularly bath lifts can make a difference and be safer and did you know you can get no water washing soap for those days when a bath feels like too much effort. You can get waterless shower caps to wash your hair too, I had my bath replaced with a wet room some years ago - much easier all round.

Maybe some of this will help you do things a little more easily. You need to look to simplify any job as much as you can. For example in my kitchen I use a two tier dish drainer on my worktop to store my everyday plates and bowls - far easier for me than trying to manage a pile of plates in a cupboard. I keep my cups in a drawer - I kept knocking the mug tree over and I use storage canisters with pop ups for easy opening and closing. Coffee and sugar are kept in small containers because it was difficult to get a spoonful out of a standard canister on days when my fine motor movement wasn’t so fine. I now have a travel kettle, coffee, tea,water and cordial in my bedroom so that I can always get a drink when my mobility isn’t so good Finally it depends what i am doing and where i am going and i do use a walking stick sometimes but mostly i use a 4 wheel rollator which is altogether more comfortable. My posture is better and i can maintain a better pace and go further, It all simplifies things I regularly do and the pay off is cumulatively less energy is used which gives me a bit extra. Have a think Steve2 you may be surprised what relatively small changes can do do in making life a little more comfortable - and you will have taken back some control been a bit proactive - that alone can help you mentally.

I think that’s enough to get you thinking a bit lol
Tot

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Hi steve2, i totally understand how you are feeling . My own mobility has deteriorated very much in last year, and i suspect spinal stenosis too. Similarly, the only relief i get is when lying down. At the same time , my hwp is feeling more back pain than he used to. He already has low bone density, and may well have osteoporosis by now. Its quite common on people with parkinsons. He has major issues with diet and madopar absorption in his digestive tract, consequently his nutrition is compromised. Its not easy living with a collection of conditions. We try to take some of ‘tots’ positivity on life, we certainly have benefited from some of her tips to manage daily life. I appreciate both your posts. You show us we are not alone, and tot, and all other contibuters to the forum , help ease the burden( somedays!) of coping with all we have to live with. Hoping today is one of your better days, best wishes to all

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Thanks for your kind message jandc. I walked / staggered to my pharmacy this morning. It was too much for me, so I have just registered to get my prescriptions delivered to my flat free of charge using “the Pharmacy2U”. The pharmacy I had been using are full home delivery wise. So that’s one less job to do.

PS I’m pretty sure Tot’s a boy.

Best wishes
Steve2