Anyone with Hereditary Spastic Paraplegia?

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  • pollyanna1052
    pollyanna1052 Online Community Member Posts: 2,015 Championing
    Hi again, you may be interested to read my new comment regarding neuro`s letter. It`s under my `new investigations` post.  HSP genetic testing is included. xxx
  • millano77
    millano77 Online Community Member Posts: 17 Connected
    Hi there,
    was wondering if anyone has any tips on dealing with my employer with this?
    I have had a lot of time off due to the pain I’m in and also suffering depression. 
    I have been told that one more day off sick my job is at risk
  • pollyanna1052
    pollyanna1052 Online Community Member Posts: 2,015 Championing
    speak to your HR department re sick leave
  • millano77
    millano77 Online Community Member Posts: 17 Connected
    pollyanna1052 said:
    speak to your HR department re sick leave
    Unfortunately that is from the HR department. 
    Will soon find out as I was off for 3 days last week due to the pain. 
  • stillstanding
    stillstanding Online Community Member Posts: 7 Connected
    In theory your employer is not allowed to discriminate on the basis of disabilities:
    https://en.m.wikipedia.org/wiki/Equality_Act_2010
  • millano77
    millano77 Online Community Member Posts: 17 Connected
    stillstanding said:
    In theory your employer is not allowed to discriminate on the basis of disabilities:
    https://en.m.wikipedia.org/wiki/Equality_Act_2010

    They aren’t. It’s because of the amount of time I’ve had off over the past 3 years. It’s been an average of 25% every year due to different health reasons. 

  • Adrian_Scope
    Adrian_Scope Posts: 11,750 Online Community Programme Lead
    Please get in touch with ACAS or EASS @millano77. It would be good for you to have some advice for if and when things progress further.
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Hi @millano77, really sorry to hear this! I will attach some information below that I hope you will find helpful.
  • stillstanding
    stillstanding Online Community Member Posts: 7 Connected
    Can I ask what others have done about notifying authorities and at what stages of their condition? By this I mean DVLA and insurance companies. Because of the rarity of the condition I haven't been able to find anything useful.
  • pollyanna1052
    pollyanna1052 Online Community Member Posts: 2,015 Championing
    Rebecca_de_Winter said:
    Hi, I just wondered if anyone suffers from late onset Hereditary Spastic Paraplegia? My husband was fit and well until age 55 when he suddenly developed drop foot and other problems with walking. Our local hospital could find nothing wrong ?. So we got a second opinion at another hospital where they actually looked at his MRI scan and told him he had the spinal cord of an 80 year old. He was diagnosed after many tests with HSP although they still have not been able to determine which gene is involved. It now affects both legs, one arm and both eyes.

    Thanks for reading. ?

    @Rebecca_de_Winter

    Hi Rebecca, I wonder if you might like to read my new post in Coffee Lounge? It`s about my new diagnosis.
    Best wishes to you and your hubby.xx
  • millano77
    millano77 Online Community Member Posts: 17 Connected
    Well my appointment for genealogy has came through and it’s not until the end of March. 
    I have a works occupational health appointment today, not that they are any use. 
    Have been in chronic pain for the past week that my meds just don’t seem to be touching just now. 
  • Rebecca_de_Winter
    Rebecca_de_Winter Online Community Member Posts: 24 Contributor
    Good luck for today, I hope it goes well. Fingers and everything else crossed.
  • millano77
    millano77 Online Community Member Posts: 17 Connected
    Rebecca_de_Winter said:
    Good luck for today, I hope it goes well. Fingers and everything else crossed.
    Occupational health appointment went well. They have recommended that I get a new office as there is stairs leading up to the building that I struggle with these days so will see how my manager is on my return to work next week. 
  • Rebecca_de_Winter
    Rebecca_de_Winter Online Community Member Posts: 24 Contributor
    I am so glad it went well and they are looking at helping you. Any problems with your manager, just contact them. ?
  • Vickymay87
    Vickymay87 Online Community Member Posts: 60 Connected
    hi all. I also have H.S.P I was diagnosed at 11. Foot drop spasticity in legs so on... my younger sister also has the same condition. I am a wheelchair user who is still able to walk a little but with difficulty. At around the age of 16 it started to affect our arms and hands. So now I have muscle wastage in hands. Me and my sister still don’t know what gene is involved, but what we do know is that we have got a complicated form of H. S. P. I’m here is anyone needs to chat. Take care all xx
  • millano77
    millano77 Online Community Member Posts: 17 Connected
    Hi folks, hope everyone has been coping ok during these unprecedented times. 
    Working for the NHS I’ve been fortunate enough that I’ve been working through it although I did move department just before Covid started and my training got halted but it’s back on track now. 
    All my appointments also got postponed but I have a phone consultation with a genealogy professor on Tuesday so hopefully get somewhere with that. 
  • kimdyer18
    kimdyer18 Online Community Member Posts: 52 Connected
    I've had hsp for 3 years its getting im 30 in October 
  • Vickymay87
    Vickymay87 Online Community Member Posts: 60 Connected
    Well I have had it since I was a youngster I will be 33 in a couple of days. If you want to chat about it I’m here ??? Both me and my younger sister have got it she’s 16 months younger than me. Do you know what type you have got? 

    Xx
  • Rebecca_de_Winter
    Rebecca_de_Winter Online Community Member Posts: 24 Contributor
    Hi all,
    Still here, nothing new to report, just a gradual decline and husband has been tried on a couple of drugs, Duloxetine and Amitriptyline but all they did was make him sleep for 22 hours in every 24 - not good. Ho hum. I think he has had enough of doctors!
  • kimdyer18
    kimdyer18 Online Community Member Posts: 52 Connected
    VickyMay87 I've got the spg 11

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